737 Person – UC Meds Side Effects Survey Results

Thank you to everyone for your continued participation in the iHaveUC surveys.  This particular survey was very interesting to read through and create because one of the main reasons for starting this website back in 2009 was due to side effects I was experiencing from a biological med that my doctors were confused about since they had not seen my particular side effects before.  Turns out they were not that uncommon upon later personal discovery.

Let the survey results begin, enjoy, read, educate yourself, and smile knowing you’re not alone with UC:)

(Below are pictures that 35 of the 737 participants sent in)

Side Effects Survey Results – May 2015

737 participants from the iHaveUC newsletter group

Question 1: 

Have you ever thought that you noticed side effects (or adverse reactions) while using or after using any ulcerative colitis medications?

Answers:

• 87% answered “Yes”
•   8% answered “No”
•   5% answered “Not Sure”

Question 2: 

When your doctor has prescribed medications to treat your UC, has this doctor also explained the possible side effects that are possible?

Answers:

• 38% answered “Yes”
• 33% answered “No”
•   9%  answered “Sometimes”

Question 3: 

If you have previously/currently experienced side effects from UC medicaitons, what did you do?

Answers:

• 73% answered “Talked to the doctor about the side effects”
• 24% answered “Nothing”
•   3% answered “Reported the side effects to either the drug company or another organization”

Individual Comments submitted to a few random participants:

• It made me very constipated and I discussed it with the doctor. He cut my dosage down.
• Started to take azathioprine and after a while felt unwell, also was having blood tests regularly. I had to stop taking tablets as blood tests showed damage to the liver.
• I just accepted that side effects were worth the end result I.E reduce my colitis symptoms
• After speaking with my gastro we decided to stop the medication because of the severity of the side effects
• Some were severe and immediately reported to my doctor to get advice on how to safely get off the medication. Others were just for the sake of noting in my chart to help determine which side effects I can learn to live with.
• My GI doctor has been very good with me and is very knowledgeable in the drugs he has prescribed.
• The doctor is for me the first place to report the side effects to.

Question 4: 

Have you ever stopped taking a UC medication because of the side effects you experienced?

Answers:

• 56% answered “Yes”
• 40% answered “No”
•    4% answered “Never have experienced side effects”

Question 5: 

Have you ever found a medication that helps your UC but you stopped taking it because of the side effects?

Answers:

• 65% answered “No”
• 35% answered “Yes”

The most common medications listed:

1. Prednisone / Prednisolone
2. Remicade
3. 6MP
4. Imuran/Azathioprine
5. Asacol/Delzicol
6. Humira
7. Sulfasalazine
8. Pentasa
9. Lialda
10. Apriso
11. Uceris
12. Colazal
13. Budesonide
14. Rowasa
15. Medrol

(This list above is not all inclusive of all answers that were provided, but is a list of the most common)

Question 6: 

Do you research medications you have taken/take before you actually use them?

Answers:

• 82% answered “Yes”
• 15% answered “No”
•   3% answered “Not Sure”

Question 7: 

Have you ever decided NOT to take a medication at all because you felt the potential side effects outweighed the potential benefits?

Answers:

• 56%  answered “No”
• 44%  answered “Yes”

Question 8: 

Did you know there are actions you can take to report side effects (adverse reactions) so authorities and drug companies can have awareness to these side effects?

Answers:

• 68% answered “No”
• 32% answered “Yes”

General Comments or Ideas about side effects that other’s might be interested in reading based off your personal experiences?

Over 200 of the 737 participants in the survey left comments to this question.  They are listed in no particular order below:

• My advice to anyone with UC, be careful with Prednisone. Yes, it may work miracles, but there are soooooo many horrible side effects, it’s almost just as bad as actually having a disease! Try to avoid Prednisone as much as possible. Talk to your doctor about substitutes or meds you could take instead. If you do have to be on it, hopefully it won’t be long. The side effects are terrible!
• Receding hair line presently while taking humira but Consultant says btr having a bowel rather than hair so I am just shouting up and putting up for now in the hope that something new may come out for this condition.
• Aziathioprine made my liver enlarge, it felt like there was no space inside my body. Had to stop taking them until the liver cleared up but in the meantime the UC symptoms came back. Happily now under control with a different medication.
• Some meds for uc are very powerful but I would advise to get regular blood tests to monitor possible side effects
• Hair loss is a big one. My hair often feels like straw and has become very thin.
  Dry cracked paper thin skin and brusing.
  As you can imagine I look gorgeous :-)
• The only drug I’ve used that has made a difference is an off brand drug that is difficult to get a prescription for, Low Dose Naltrexone. I was symptom free for over 2 years before I began showing UC symptoms again. I was on LDN as a stand alone all that time.I’ve begun using a fairly new drug, Delzicol 400 (being used for a mild flare) & after halving the dose, find it seems to be helping. It is in the melsalimmine family & a time release pill. If I take the drug as prescribed, the side effects are intolerable.
• Don’t take prednisone for to long
• Well I was taking Asacol and after a while I had a blood test and my liver function was off so I stopped taking it
• The list of side effects frightened me (possible cancer or even death???) but I am now thankful for the medicines I have chosen. It took 6 months to see a difference with the Remicade and almost 1 1/2 years to see complete remission. My only concern now is that I have asked my GI doctor if I can stop some of my medicine (Remicade, Imuran, Lialda for over 3 1/2 years) but was told to leave everything as is. I agree I do not want to be as sick as I was several years ago but I also do not like the possible side effects of all the medicine.
• Had to stop taking azathioprine because of side affects, was switched to mercaptopurine which is a similar drug and have no side affects I have been on this for twelve months and it is working well.
• I find that taking probiotics with my medication helps relieve my flares.
• side effect of remicade for me is eczema and has been difficult to treat with multiple meds and several dermatology visits. minor side effect for me as remicade has changed my life for the better.
• Was put on a dosage of Prednisone starting at 60 and tapering off for the next four months, side effects that I was told, moon face, weight gain and mood swings. Months after taking my last dosage was diagnosed with Avascular necrosis to both of shoulders. Bone death, had to have both shoulders replaced. This was never told to me to be a side effect to Prednisone.
• I recd warning of side effects and now on infliximab still suffer side effects but in remisSion. Was told i needed to decide if side effects are worse than flare up n make decision on that. given nxt options move toward surgery hard choice to make, tho wonder if could maintain remission med free which is never an option provided. Also be good to have info on diet and see if this could help maintain med free remission but doest seem option from medical point of view.
• Over all I haven’t got major side effects due to UC medications ,from time to time I have headache still not sure if that due to UC,some times moderate joint pains last for may be couple of days and disappear after that,I think it is all depending on body system reactions.
• Ihad been taking pentasa (8x a day) for 3 weeks when I had severe dizziness & numbness in my arm. this happened while driving and ended up in a trip to A&E. The leaflet that comes with the tablets doesnt mention dizziness as a side effect but i have found it listed on several drug info websites (Not sure how reliable these are!) If it is a known side effect then i really thing people should know about it as it was v. scary and extremely dangerous if you are drivinghowever i have spoken to 3 different doctors who all say pentasa does not cause dizziness so who knows! :-)
• Prednisone-effects -nervous energy-fasttalking/walking , busy, sleeplessness
  Imuran – cracked skin on fingertips & vague nausea initially, both passed, sleeplessness, joint problems
• Prednisone should be banned, outlawed and never made again!!! It is awful, terrible and I wonder what the true long term effects really do to our bodies. I hope someday a real alternative will be available. That’s why I’m trying improve my UC through diet like so many others out there.
• Pentasa could cause hair lost.
• I have removed Azathioprine and Methotrexate from my drug regime preferring to use the SCD diet. That has been moderately successful allowing me to experience an easing of symptoms and assisting with a better lifestyle. I am waiting for a Phase 111 Clinical Trial to begin with Tofacitinib
• I sometimes get the feeling consultants have a tick list of drugs to try, one after the other until they eventually face up to the reality that drugs may treat the symptons but don’t cure the cause. It seems to me they might as well have a monkey trained to give out drugs until they find one that works or doesn’t as the case may be.
• I’ve had side effects to Prednisone steriods when i needed to take them to clear up a bad ulcerative colitis flare.I got the moon face, no sleep, hair growth on body, shaking, tiredness, and a hump in between my shoulder blades. Once off the prednisone it probably took a good 3 months for the side effects to go away.
• When you are dealing with ulcerative colitis, you do not have that many options. so you end up taking meds knowing they will have side effects. I wish congress would pay more attention to the raising number of GI diseases and fund researches that will help find a better way to cure or control them.
• take away side effects and let us suffer just with this disease in peace
• Humira caused me have what I would imagine having MS would be like. I stopped taking it and learned later that Humira can cause Ms.
  I took Cimizia next and it sent me to the hospital with hyper sensitivity, very scary.Prednisone caused weight gain and made me jittery so I stopped it, too.
• Be informed and thanks to sites like this it help heaps!
  It is your body so have a voice when prescribed something you are not comfortable with.
• I have many side effects when taking Prednisone – insomnia, insatiable appetite and weight gain, acne on my face and scalp,and a racing heart to name a few. It does improve my colitis flares though and also gets rid of a lot of my chronic aches and pains while on it, so in the end I feel it is worth taking.
• Do your research, speak to real people you trust if you can, and find a doctor you trust seems to be the best way you can go. There seems to always seems to be some danger in any drug but you have to at least give it a try and hope it will turn out well. And if it doesn’t seem to work have another option that you can try that you can believe in, maybe even an alternative to medicine.
• Some of the meds to stop the diarrhea actually make it worse.
• I have found the side effects are usually the same as the symptoms I am trying to fix with the medication. After 3 or more days on the new medication the side effects do get better.
• Mesalzine gave me seizure like symptoms and my skin was falling off.  I had a brain injury before hand that made it worse
• remicade has been a very good drug for my uc but u really half to be prepared for the joint pain that is one of the side affects i have so fare
• After being on sulfasalazine and predinisone together for a few weeks, my bleeding had all but disappeared, and bowel movements had become close to “normal.” But, then what appears to be the side effects have kicked in. My joint pain started increasing again. Then, the abdominal aches started to increase again. Within a few days of this happening, I started getting a rash all over my body that looks like a sunburn, and I started getting a sore throat. Within a couple more days, my heart rate elevated, and I went to my primary care dr who tested me for strep and the human parvovirus, both of which came back negative. He had me stop my sulfasalazine while trying to get these other things back under control. Within two days, I’m already feeling better. Headed to send all of this to my GI now.
• I WISH THERE WERE HEALTHIER DRUG CHOICES IN THE WESTERN MEDICINE WORLD FOR IBD
• Pentasa, makes my hair fall out.
  Prednisolone, changed personality, over ate, face blew up, made me feel very low when stopped.
• I am pretty certain pentasa is giving me nightmares. Still better than bloody diarrhoea but I’d rather not have nightmares. I also think it makes me prone to feeling anxious although I guess this could be the UC not the drug, either way I wasn’t anxious before the UC.
  Other more well known side effect is hair loss.
• The harshest drug which I am currently on is Imuran. I have experienced kidney trouble and hair loss. The thing to keep in mind is that if the drug is working..give it a try. The benefits may outweigh the side affects.
• Worst side effect experienced from Asacol taken orally. Severe burning and abdominal pain which subsided if only taken every other day, so eventually I stopped taking it altogether because my uc symptoms were the same, but the pain was much worse. Switched over to Pentasa and didn’t have the same issues.
• Increased nervousness, anxiety because of taking for more than 5 years continuously the cortisone (Medrol)or Prednol.
• I found that taking methotrexate was making my stomach really sore. I started having stomach cramps as soon as I ate something and had to run to the toilet. I now take stomach acid reducing medication which helps. I also take the methotrexate in 3 doses spread out over the day that I have to take it on (I used to take it in 1 dose). I also take one immodium every day which I did not need to do before being on methotrexate.
• Steroids hideous demoralising side effects , mescaline not much better
• Best to start a journal with dates drugs and any side effects. Most effective with multiple conditions.
• I have recently been diagnosed with Diverticulosis in October 30, 2014 after having a colonoscopy. I saw my specialist again on the 17th November and was prescribed another 2 months of Asacol 800mg tablets and had another appointment with the specialist on the 20th 0f April, 2015. I informed him that I didn’t want to take the tablets any longer, so he agreed. I was feeling so frustrated with the constant pain on my left side and left lower back ache. I had no energy, feeling lethargic, breathlessness, coughing and generally feeling sorry for myself. I just couldn’t be bothered with my day to day living. Some days I just want to lay in bed and cannot bring myself to get up – but I make myself do it! I am having another colonoscopy on the 8th of May in 2 weeks time and will hopefully find out the results. Since I’ve not taken the tablets, I do feel a lot better, (Do you think that I am too paranoid about my condition)? I have been a very healthy lady and have not had any major health problem all my life. I will be 75 years old, shortly and have had a very good healthy life style. I have enjoyed reading about all the comments on your UC site. Thank You!
• I have not experienced too bad side effects till date but if i do then the first thing i would do is report to my doc.
• Lialda causes me to be extremely thirsty.
• Constipation with Budesedine
• Taking Imuran put me in the hospital for 3 weeks…
• Long term side effects need to be weighed in as well. The Prednisone I took in my 20’s is now affecting my bones (osteoporosis) in my 50’s. I am now more interested in alternative therapies – there is no quick fix as UC is a chronic disease!
• Possibly joint stiffness as aged 61 not sure if old age or meds.
• Whilst you need guidance from your doctor there is hardly any point in reading the literature that pharmaceutical companies give with their medicines as they routinely list everything under the sun as a possible side-effect and are therefore counter productive.
• I get head rushes when I stand up quickly with Uceris. Also can’t drink much on it. Maybe one glass of wine or one beer. Also when I exercise, my chest gets tight — I can’t overexert when I am on the drug.
• No matter what the doctor tells you, always talk to the pharmacist regarding side effects and drug interactions. Because they hand drugs all day long, they are required to take yearly courses to keep current regarding drug information. Though doctor’s are also required to take yearly courses to keep their license, those courses do not solely focus on medications.In fact, many doctors will call a pharmacy for drug information prior to making a decision regarding a prescription.
• Ultimately, we are in control of our health but we also pay for our doctor’s expertise. UC is a serious disease and remission can lead you to believe that you are cured. It is devastating how quickly a flare can make you feel you feel very vulnerable and more amenable to taking drugs you might like to avoid.
• I think prebiotics help, and take regular prescribed meds with food helps reduce bloating
• The first time that I had an allergic reaction to Humira, I had large hives all over the left side of my body. The GI doctor that I saw at the time didn’t believe me when I saw him two days later because it was only on one side of my body. At the time that I had my second allergic reaction, I was also in the process of switching doctors. So I went to the ER instead of my old GI doctor or my new GI doctor. The ER doctor was hesitant about telling me to stop taking the medication after I explained my symptoms. It was a more mild reaction, I had pain and swelling at the injection sight, and I don’t think he wanted to be held accountable for telling me to stop taking the medication in case something went wrong.
• I have altered the time of day that I take certain meds because of the side effects. I have also held off on taking my immunosuppressants such as Humira and Imuran because I was sick with a cold or with C Diff. I wait until I am better and then resume taking those meds.
• I have not experienced side effects too bad till date but if i do i would definitely inform my doc.
• Refuse to take steroids other than intravenous when in a life threatening situation and taper orally ASAP to avoid a. Hideous side effects….too many to mention including psychological and b. Becoming steroid dependent! !!!!
• Everyone is an individual. Don’t always trust what your doctor tells you.
• Asacol,cholestramine. horrible acne that left pits in my skin, my hair falling out, dizziness, and disoriented. Started Choestramine, it caused nausea and vommitting, Leg Cramps. Im not taking any meds now. I am trying to get better by a strict diet.
• Remicade is great but the joint pain you get is brutal. It literally cripples you at times. There has to be a way to improve this as it can cause a dependence on pain medications or make exercise difficult… which can then lead to weight gain and even more joint issues.
• Use pentasa 400 . it helped big time in my case and stopped my Diarrhea. I used it for 2 years. Although I felt a lot better, my doctor recommended to use it for an another year. I don’t get anymore diarrheas, but still cannot use anti – inflammatory medicines.
• If you feel like hell the day you get remicade – this phenomenon will pass.
• Out of desperation anyone suffering a flare up would consider any medication to ease the pain but I now think that everything should be taken into consideration before taking prescribed drugs.
• Azathiorpine made me constantly nauseous and made my hair fall out in big lumps. It was terrible! Steroids made me gain 2 stone over about 2 months, I couldn’t stop sweating and I was irritable and snappy. Explain to your loved ones about the mental side effects as well as physical ones! You will need support :)
• I happen to have a good GP now who is monitoring side effects whereas other in the past have not.
• Generally speaking the side effects that I have experienced have not outweighed the benefits that I have seen. Of course I have days where I want to throw in the towel but having gone through the worst of what UC can offer I prefer to put up with the fairly tame day to day side effects that come from using certain medications than to face a flare with no or less defence.
• My daughter lost 50 pounds and was very sick. I had no option than to give her Humira.
• When I was taking pentasa I had insomnia and itchy skin and my liver enzymes we’re going up am not sure if anyone has experienced this. Tried azathioprene I was vommittg terribly.
• I think Prednisone is evil, my hair almost all fell out, and I gained about 40 lbs. in a year while taking it.. my Dr. forgot to renew my prescription twice and I ended up in emergency because my body blew up so badly I couldn’t walk..you have to be weened off this drug very slowly. As a result of this my knee is damaged permanently.
  Salofalk makes me nauseous but it is bearable.
• Asacol, Bazalaside – Taking them for a long period is giving me breathing problem and hence stopped
• Read before you start new meds.
• Experienced a lot of side effects like loss of hair, skin lesions, bone and joint pains,migraine and general weakness.
• If on Imuran, GET YOUR BLOOD WORK DONE OFTEN!!!
• Online lists of side effects, also on ihaveuc, are 90% worthless since they are sadly not representative. They are most times biased and critical comments are usually much higher as positive comments. It tells you about potential side effects but not the likelihood.While it is important to be aware of side effects, it is most times not clear how quick they can go away. It is not clear if they are temporary till you are adjusted to the medication. I learned so much with own experience that I didn’t find anywhere.E.g. prednisone, I wish I would have been aware how slow you have to tamper if you take it longer then a week. When I wasn’t familiar with prednisone and my GI told me to 40mg, I wish I would have known to go slowly up so the side effects don’t hit me hard. And that 40mg where probably way too much.I still do not know how much more delayed prednisone works with me after the 2-3 usages. I still do not know how quick side effects fade when my body and mind gets used to them.I still do not know “enough” about the side effects of prednisone, but just researching three potential medications to take in the (near) future leaves all these questions and information open, too. How long does 6mp/humira/remicade to taper down. How quick do side effects fade. Are the horrible side effects based on sensible persons or the “average”? Can I increase these medications slowly? Are the side effects of the blood ok if you stop the medication as soon as you figure them out (and only long term is dangerous).What other options are there? If I know the side effects and want to skip, I should also know other medications and options (like alternatives such as SCD or acupuncture).As more information you have, as more you can make a personal decision if a medication is worth it for you or not.
• Always, always, always get second (and third) opinions about drugs and dosages. One doc I had quickly ramped up a Prednisone dose to levels/duration which somewhat shocked one of his colleagues in the same practice during a consultation when the original doc went on vacation.
• I think every person given prednisone should be given a bone density test. I believe I have steroid induced osteoporosis, but no doctor will talk to me about this when I bring it up. I find this so very frustrating.
• What side effects are most typical? Does loud ringing in the ears happen to many taking colitis meds?
• My right hip flexor area and the glue area on the same side hurt all the time, worse with movement. I think it might be caused by the uceris I’m taking.
• 6mp gives you bad side effects, remicade treatments have a number of side effects, be aware of them.
• Imuran made me itch like a crazy fool. All over my body. Chest and legs the most. So bad that I was bruising myself.
• Don’t rely on the internet when determining side effects of a drug. Talk to your doctor. If you don’t feel confident in your doctor’s opinion, get another one.I am currently on Remicade and my hair started falling out. I immediately jumped on the web and found a couple posts from people on Remicade with hair loss issues too. I was quick to blame the drug. I called up my doctor and said we needed to discuss getting me off Remicade. He reassured me the hair loss was more likely due to significant malnourishment I had experienced a few months prior during a severe flare when I was hospitalized for 27 days and fed with TPN most of that time. He asked me to give it another month and the hair loss should subside. He also explained that while hair loss isn’t a listed side effect of Remicade, the instances where hair loss has occurred from the drug has been the manifestation of another auto-immune disease where hair is lost in patches, which wasn’t my issue.The short is, don’t rely on the internet to be your doctor because you can find anything you want on the internet.
• In my experience it’s not IF you will get side effects, it’s WHEN.
• most side effects mimic the symptoms
• Side effects are tricky. Would this (whatever it is) have happened anyway? I’ve been on one form of mesalamine or another for almost 20 years. My UC has never gone completely into remission. How do I know if that is a side effect, or if the medication isn’t as effective as I would like.Several months ago my GI dr. doubled my daily Lialda dose. I think the symptoms haven’t improved and have probably gotten worse. Lialda? Not to mention that doubling the dosage quintupled the costs (patient assistance was already at max), so maybe the stress of that is an indirect side effect. :-)
• different people have different levels of side effects , its not a one size fits all
• if you are taking remecade and have to stop taking it, do not restart it. It causes horrible allergic reactions
• There are, not only, medication side effects, but also side effects physically from the ‘cure’ of UC. Blockages, gasteroparesis, arthritis, kidney stones, ect. I was never made aware of potential side effects of surgery until after surgery, years later, when I started getting sick again. Reproductive health & awareness & side effects/interactions with medications were also never discussed.
• Unless it’s an allergic reaction you have to give the medication time to work. I found a learning curve in determining if my fatigue and body aches were a side effect of medication or symptoms of a UC flare starting. At one point I cut down on My Lialda dose (from 4 to 2) and stopped the Rowasa. In a couple of days GI symptoms (blood/mucus) started back. I went back to my old regimen (4 Lialda and nightly Rowasa). GI symptoms improved but I still occasionally have fatigue and aches. So bottom line-I’m not 100% sure if it’s the medication or the disease. My GI believes Lialda/Rowasa have little or on side effects.
• One of the problems I have noticed is there is no one “good” medication that works for the majority – it seems to be a real hit or miss situation.The other major downside to this disease is there is so little known about the cause and without that information it will be a long time to find a solution. So many doctors are quick to prescribe medication after medication and they don’t appear to concerned with the cause.Another problem I see is almost all doctors I have spoken with do not feel that your diet had anything to do with this. My personal feeling is diet has quite a lot to do with it – maybe it is not the major contributor but it definitely plays a part.
• The doc told me Immuran was my best chance and I had to take it. After six weeks of nausea, total stomach discomfort and generally feeling awful I stopped taking it. When I told my doctor he just said fine!! I thought I didn’t have a choice. That or my colon removed. I still have my colon and an easier med to help.
• Just because it has side effects doesn’t mean you will get them but if you feal like you are having side effects talk to your doctor about it to confirm that it is a side affect
• Generally I get headaches, sleeplessness, feel anxiety, gain weight, and am sensitive to sun with drug Uceris.
  That being said this drug has stopped me from bleeding combined with mesalamine.
• Took Lialda as soon as I found out I had colitis. Immediately diarrhea and bleeding got worse. Doctor said because my colitis was getting worse. took it for 3 1/2 weeks and then started having flu symptoms and then had pains in my stomach like someone was jabbing me with knives all over stomach. He took me off and then wanted to put me on budesonide. I researched it, didn’t like what I read about the side effects and then went to see a herbalist. I started taking Sea Cure and Colostrum for 2 months now and have not had any diarrhea or blood. Hopefully this continues to work. I told my doctor what I was doing and he was OK with it. Just told me to watch for any blood.
• Evev though u had been taking a drug for months or years with good results a reaction could occur unexpectically
• Asacol caused a marked hair loss for me.
• I’d like to say something about Prednisone: I usually hear so many negative things about Prednisone, but honestly it has been really great for me so far. I never had too much difficulty tapering, no weight gain or moon face. No terrible issues for me. Instead, before the Pred I would be miserable and in so much pain. It has helped me several times in very severe flares.
• I f taking a new med pay close attention to what your body tells you. I started taking Asacol and it took me awhile to realize that was why I was itching.One more note.I was on Azulfidine for about 35 years.I ignored the warning about sun exposure.I was also on Pred.on and off also. I’m 62 work outside and the skin on my arms look like I’m 80!
• I believe it is worth telling your specialist about the side effects as each of us are different and can experience different reactions to the drugs. The more the specialists know about the drugs and effects, the more this condition will hopefully be managed and alternatives offered.
• Side effects were not severe. Since starting to taking Humira I have had psoriasis like sypmtoms on my hands and feet. These are easily treated with creams and don’t impact my lifestyle.
• The meds that I used to take (Apriso) had no side effects for me & worked great! I had to switch to another med (Sulfasalazine) that had horrible side effects, because the Apriso was over $300 a month. I can not afford $300 a month & I can’t handle the side effects of the less expensive one. What do I do?
• Listen to your body. Doctors always want to push certain drugs that will cause more harm than good. Get second opinions and research
• I feel that keeping up to date about possible side effects is really important. But that information must be balanced with the number of people who have had no side effects. So if something works for someone without issues or side effects they are unlikely to report it. However if the medication does not agree with you, the person is likely to report it and blog on the internet. This can make for a very distorted view. The 6mp has completely turned my life around. I tried to manage my UC with diet and stuck with a completely pure diet for 8 months. It made my life slightly more manageable but nothing like normal. Now I feel fabulous and am not experiencing side effects. I do not like being on the medication, but for now, it is magic.
• I believe you must do your own research, most doctors feel the drug they are prescribing is worth the risk,(probably because they do not have to take it). I am on IMuran and my hair is falling out my doctor says it happens, I will probably quit this drug because I want hair. Prednisone worked the best, but gave me diabetes that required insulin, and I complained enough to get mhy doctor to finally reevaluate the prednisone.
• Some side effects listed won’t ever happen…if you are worried about them ask the doctor for the % of patients that experienced them, that may help making your decision to take or not
• increased urination, rash, and then pills started showing up whole in toilet, (DELZICOL)
• I found that when first starting Asacol HD I felt nauseous, almost like morning sickness. This continued for about three weeks then stopped. That feeling never came back as long as I was taking the drug.
• No comments as I never experienced any side effects.
• Sometimes the side effects are worse than the disease
• I guess my intoleranse to Pentasa is a very uncommon thing. What I was painfully amazed with was the variety of side effects I was getting from it: fever occured all the time, but other side effects included sore muscles, tooth ache and at one point my face got swollen, after which the skin flaked off my face. My doctor said this is very uncommon, but every time I tried Pentasa, I got some kind of side effect which disappeared shortly after I stopped taking it.I’m now on Azathioprene. The initial side effect was a fall in white blood cells, so my doctor asked me to halve the dose. This helped and hopefully I am fine now.
• I think there are at least two issues here:1) Side effects of a medication that are as uncomfortable as the symptoms they are trying to cure.
  and
  2) Potential side effects like cancer or tuberculosis. Sometimes we opt not to try meds because of POSSIBLE and serious side effects even if we never find out if the drugs work.in the first question it is matter of degree–of dose and duration and severity of disease OR side effect— what quality of life would you settle for? This is an interesting question for a future survey. (e.g. “At what point do you put up with mild UC symptoms rather than ramp up meds, start or take higher does Predisone taper , etc?
  The second question is informed by the way we react to possibilities and odds. I would be more inclined to try Humiera if it did not sound so scary and irreversible. I never got to the point of asking How many occurrences of TB per 1,000? actual risk calculation. There are also fallacies of decision theory to contend with.Those of us with moderate UC walk a line between more aggressive treatment that might yield an actual long term remission and the possibility of problems worse than mild-moderate UC.
• I wish I could stay on Uceris forever; helps immensely with basically no side effects
• You know your body. Be aware of any changes after starting a medication so that you can weigh up the risks with your doctor. Unfortunately with this disease the benefits almost always outweigh the risks from medication.
• Doctors should tell you about all the side effects, not just the common ones.
• Do your research!!! It’s out there, so look!!!! Be sure it’s a credible source. The drug company will only tell you what they want you to hear. Sometimes they are forced to report some of the rare side effects, even if it happens to only 1 person in a 10,000 person study. But there are side effects that many people have that don’t get reported either.
  Everyone reacts differently too. Every one is different!!!! You won’t know unless you try it, but you are your own advocate!!!! Talk to your doctor and do the research! It may save your life!
• Since I had trouble addressing the thrush symptoms when the powerful antibiotics prescribed for my ulcerative colitis killed both the good and the bad bacteria in my body, I learned more about natural remedies for thrush which were much more successful than the icky green liquid the eye, ear, nose and throat doctor gave me. The next time I had uc and went to the emergency room I did not take the antibiotics they prescribed for me at that time. The next few times I had uc I did not even go to the emergency room as I did not see any benefit if I was not going to take the medications they were going to give me. Instead I invested my time in curing myself of uc, using natural remedies, anti-inflammation supplements and diet revisions and after that first year I have been symptom free of uc.
• I would like to know if anyone taking Lialda and losing hair is taking any supplement to stop the hair loss. My hair is becoming so thin even though I am taking Biotin daily. It is disturbing to a female thinking she will be bald.
• remecade ,caused drug induced lupus,am currently taking 5 mg prednizone,1.5mg LDN, and lialda
• Because of an inconsistent dose of prednisolone steroids (oral and IV) taken over a course of 4-5 months (highest dose was 40mg in oral form), I suffered debilitating myalgia in most of my muscles (particularly my legs). It took almost a year after stopping the steroids to get back to normal and while I was suffering these effects i felt like someone twice my age. Had I known about these possible effects, I would have insisted tapering off the steroids much sooner.
• Always check on the web for the side effects. Doctors usually never tell you about them.
• The drug industry is really not interested in knowing about side effects or how alternative drugs might help thier patients. Ditto for the FDA. Don’t waste your valuable time trying to inform this industry or to educate your doctor. For example, my physician refused to write a prescription for LDN, but offered no reason for the denial. Interview and find a physician who understands your specific situation and works with you relative to the side effects that you experience. Build your own integrative team of (medical doctors, nutritionist, nephrologist, chiropractor, NMD, etc.) to work with you. Listen to your own body and do not continue to see a physician who denies that it is the drug that exacerbates your symptoms. Insist on tests before and after taking a new drug to determine positive/negative results. Many physicians are too concerned about their own profitability, reputation, and under the influence of the drug companies. Some doctors are too busy treating the symptoms to keep patients in remission rather than exploring alternative options that might be useful and in full denial of how alternative medicine options can help you. Our current health care system does not support physicians either & they are burdened with paperwork and paitent loads, that hinder an ability to provide a patient-centered approach.
• Research, research, research! My GI prescribed 6mp but did not follow up with testing and had it not been for yearly routine lab work by my primary care Doctor I would not have known that my liver was being damaged by the drug. It was also affecting my INR readings – interacting with the Coumadin I was taking. Why was the GI not on top of all this? You know your body…be your own advocate!
• All of the mess I have had to take over the last 12 years have had in wanted dude effects in one form or another, none have been without some kind of problem.
• Sometimes taking a breather is necessary even though I know I am going to pay in toilet paper for such a decision. I wake up at night and sit up in bed sometimes and say to myself, holy crap, I forgot to take my medicine even though I know I did not. After so many years, I think it wears a hole in your soul.
• I read the side effects and some of them were the side effects that i was trying to stop..One drug’s side effect was diarreha,, well thats what I have and need to stop..In my case most of the drugs not only were brutally expensive but didnt work and made me feel worse
• Remember its your body they are dealing with and get all the info so you can make the best choice for you. Drugs arent always the answer.
• I do better without medications. I have flare ups now and then but not as bad as when I was on medications.
• I think their should be more transparency about the possible risk of lymphatic cancer when on long term immunosuppressants. I was taking double suppressants… Azathioprine and Infliximab :(
• I did end up trying Mercaptopurine because the colitis was so bad and had been for 14 months so I went on it begrudgingly. I was so ill within a week I developed the worst sore throat I’ve every had in my life, I couldn’t talk, eat or sleep as the pain was so severe also I developed a rash sores on my face that I’m still struggling with even though I’ve been off the medication for 2 months nearly. I have to now take steroids other wise my face is so sore and cracked. But the worse thing is the colitis is still out of control! :-(
• Lialda: make my diarrhea symptoms worse
  Prednisone: anxiety
• Side effects can sometimes be unpleasant, but compared to the damage and pain the disease itself can cause, they are just minor inconveniences. In my case, whenever I was on prednisone I would get this horrible acne rash all over my face (along with a few other minor side effects. I hated it, but at the same time I learned to be grateful that the prednisone was working and was allowing my colon to heal.
• When you research yourself, you are very aware that you only really see negative feedback. Possibly more focus on positive effects of medicines
• I have been on Remicade for 5 yrs now, did have to increase dosage to getting it every 6 wks instead of 8 wks. with increase dosage as well in last year in here. Also, take azathioprine 50 mg (4 daily) for one year in here. Iron pills on and off . Remicade has allowed me to keep my colon in. Which I prefer.
• Drug companies really know what their MEDS can do and do not want to hear from you about anything they sell. Their ears are sealed shut. And, forget about any help from them if you have a prescription plan because they will not send you anything if you have any kind of coverage——I know and have tried.
• Be patient with prednisone. Night sweats and broken sleep happens .
• Many of the drugs just haven’t worked on me.
• Use the drugs that help you feel better.
• The only time I’ve ever had side effects was from Prednisone, and that was a short-term treatment anyway. The long-term meds I’ve used have been delightfully free of side effects.
• Prednisone was the worst. I was on some dose of it for about 8 years. Depending on my UC symptoms, the dosage would be higher or lower. I experienced weight gain, puffy face, terrible mood swings, and fatigue. My biggest complaint, although my doctors never would specifically attribute this to the prednisone, was the debilitating body pains I experienced. There were times that I could barely move. The pains felt like when you have the flu, only there was no relief with Tylenol or Advil (I know i’m not really supposed to take that anyway). And I hurt from my neck to my toes. After finding a doctor that I begged to take me off the prednisone and was willing to work with me a lot, I finally found an alternative therapy. I’ve now been off the prednisone for 2 1/2 years and the pain is gone.
• I’m on Remicaid. There was no mention of hair loss and joint pain as a side effect on their website. When I did a general Google search there was a site where others noted similar side effects to mine.
• I have stopped the pred and found wheatgrass power ..It’s wonderful stuff and really works .
• For me, there really are few side effects that outweigh the symptoms of UC. I would rather deal with discomfort, pain, incapacitation, loss of limbs, etc. than suffer the consequences of a full blown flare of UC. Well, depends on which limbs.
• I had been taking Pentasa for approx 3 weeks when I experienced severe dizziness and pins and needles/numbness in my left arm. This happened while driving and resulted in a trip to A&E. However this side effect is not listed in the leaflet that comes with the tablets – but I have since found dizziness listed as a side effect on several American drug information websites (I’m not sure how reliable they are) If they are reliable sources, and it is a known side effect, then I do think people should be aware as it is extremely dangerous if you are driving.However, I have spoken to 3 different doctors who all say Pentasa does not cause dizziness, so who knows! :-)
• It’s not enough to know the side effects of a particular medication. Know the rate at which the side effects are likely to occur, and which population group they are most common in. Know potential drug interactions too. Sometimes, the pharmacist is more knowledgeable about these things than the doctor. Ask questions, and research on your own. Sometimes, there is no “good” answer. The disease and the treatments can be brutal in different ways. Your best bet is to make an informed decision based upon what you need, and what you can tolerate. It can feel like you’re playing Russian roulette with your body, but do your best to stack the odds in your favor.
• I started having symptoms after 5 years symptom free, I started on Asacol 400mgs x 6 daily. I took this every day for 3 months believing my UC was getting worse. One day I missed my morning dose. I had few symptoms that day. I now take 1x400mgs daily which I know is not therapeutic but I have NO symptoms. I have an appointment with consultant 15th May. I will have a colonoscopy following that to know more.
• They are all different what works for you may not work for someone else.
  Some med’s cause more problems than the disease.
  I try to go as natural as I can with help for my U C.
• Steroides ara working but give me all sort of side effects. Pimple with puss in head, ulcers in my mouth, thin skin, mega appetite, strange emotions.
• It seems like these drugs and their possible side effects are all really different for everyone. Which makes it more challenging to talk to doctors about possible side effects because they seem to only be concerned about or believe in the most common side effect reported. Also, with IBD, it seems common that sufferers have other health issues that could be compounded by medications or treatments, but most GI’s don’t look into their patients holistically to try to treat more of the root cause than just the symptoms.
• If you think it is a side effect of medication do speak to your Dr about it; I feel the majority of the time we know our own bodies better than Dr’s do but at the same time listen to the Dr’s advice.
• Prednisone has the worst side effects for me. Weight gain, mood swings, trouble falling asleep, weakening of bones, bad taste in my mouth.
• As answered in Q.3
  Prednisone and cortenema – my initial course of treatment – significantly exasperated my bleeding and diarrhea but I was told I just may be sensitive to the Rx. Makes me wonder if there is a significant overgrowth of yeast or fungus in my intestine.
• I’m very tired and sometimes I even feel like I’m anemic again but blook work ok. Sometimes my bones ache all the time. I think feeling tired and can’t focus is the worse.
• After taking Asacol for several weeks (my colitis symptoms never improved) I suddenly developed colitis like symptoms ((bloody diarrhea and extreme pain). I went on the internet and learned that an adverse reaction to Asacol can be colitis-like symptoms. I also could not tolerate Immuran (extremely nausous and violent diarrhea).
• After about 3 weeks on the medication, my urine output dropped to almost nothing. I was retaining fluid (weight gain). My fluid intake had not changed.
• Side effects caused hair loss but the pros of the medication out-weighed the cons. I tried to counter the medication and took biotin to help improve the hair loss. A year and half later my hair is still not back to what it use to be
• It seems that most side effects outweigh any benefits for me personally,
• Probabilities like 1 in 100 and 1 in 1000 etc scare me sometimes but you’ve got to take whatever is needed to fix you up. My UC specialist is really good and has given me his mobile number so any meds I take he explains prior to me taking them and answers any concerns I have. He expects me to text him daily for a week once I’ve started them. He gets me back in if I have any problems so the best advice I can give is make sure you get a really good doctor. But doing your research is equally important. So good to know as much as you can.
  One thing I have done is make sure you know all the side effects no matter what the odds are of you getting them. If you get the slightest change stop and see your doc. I don’t want to ever feel like a hypochondriac but it is for our own good. If something doesn’t feel right then it probably isn’t so get it checked out.
• Sometimes it’s hard to tell side effects from the drugs or UC, fever , chills, not feeling hungry, really tired!!
• Try strict scd diet. No carbs only proteins to avoid side effects of medication. Because with strict scd you may don’t need medication
• Every person has different responses, I don’t think anyone should not take a drug because I had a bad reaction to it. I would be reluctant to advise someone not to take something based on my personal experience.
• Weight gain
  Irregular heartbeats
• I attempted to take azathioprine on three separate occasions. Every time I suffered severe diahreoa and vomiting within 30 mins of taking it every time and lasted 5-6 hours. I have never suffered any side effect from any medication in the past (30 + years with eczema & asthma, 3 years with UC), so never expected to get such a severe reaction.
• I think doctors should be friendly and tells all adverse side effects of thrse medicines as there are lots of herbs and also multuvit nd herbal enemas which atleast dont hav side effects nd also there are such good probiotics which doctors dont told me
• I am currently taking Humira and have been for about 7 months. Previously to Humira I was taking Imuran and was hospitalized with acute pancreatitis.
• The side effects I was experiencing was hair loss. I am a female and I do better with just diet control, although I still experience light symptoms. I would rather have my hair.
• Don’t just take the prescription without doing your homework.. Talk to dr, pharmacist, etc.. Educate yourself..
• everyone reacts differently. do not take your friend’s reaction as what may happen to you. find a gi that you can build a strong rapport with so that you are comfortable reaching out with any doubts, concerns, etc. i email my doctor all the time with questions and concerns and i get a response within the same day.
• As we were trying to figure out the best course for our son we kept finding that every medication prescribed had the potential side effects that were trying to fix. We have found that the tradition Chinese medicine path works best for our son. This along with vitamins and diet modification. We took the road of fixing the gut which in turn seemed to take care of the inflammation.
• You have to figure it out for yourself and not rely on the doctor.
• Predisone cause me to have Central Sirus Retinopathy, fluid build up behind the retina in my left
• I am now keeping a vigilant demeanour and noting my effects. I am waiting to discuss with a new specialist and therefore possible changes to my meds
• Doctors keep prescribing meds without understanding what is actually needed. So select your doctor wisely.
• Take zinc for skin problem that comes with Imuran
• When first diagnosed with UC in 2001, I was prescribed the standard treatment of Asacol and prednisone which had severe paradoxical side effects, worsening the UC. The UC continued to worsen requiring an emergency admittance to the hospital. The day before scheduled discharge, my colon ruptured necessitating a subtotal colectomy.
• Just prior to completing this survey, i was texting a friend in hospital who was given Pabrinex and was not told of the possible side effects (anaphylactic shock) shown by sneezing or asthma symptoms.I was taking over 30 drugs a day after my first surgery (ileostomy) and i made sure i knew what each one was before taking them. Same with the I.V’s.As a result, i have refused steriods from my second surgeries onward and also Morphine, as it became clear that i could not tolerate it.My friend has just text to say in the US, they recognise that the side effects of medication can be worse than the illness, so they first treat the patient with foods and drinks containing vitamins and minerals. Makes a lot of sense!
• The side effects were not severe
• Do your research
• Allergic reaction to humira. Took 6 weeks to experience it but kept having body aches. Shivering. Fever. Swelling of the eyes. Nasal pressure.swelling of the tongue.
• they seem to be blood test related low white cell counts, or osteopina, things that you don’t feel until its too late.
• Asacol was terrible for me. I was on it for almost 15 straight years and felt absolutely terrible all the while.I believe that I was allergic to it but was unaware that I even could be. No doctor ever told me that I could actually have an adverse reaction to it. When I told them about the side effects, I was always told that it was the UC, and not the asacol that was causing the adverse reactions.I finally took to the web and found out a lot of helpful info on it and promptly stopped taking it against the doctor’s advice, of course. I almost immediately felt better and have never taken another UC med since.
• Have liver/kidney function tests periodically so see if the ranges are normal.
• I sometimes feel that some of the side effects I have will go away,given time. On the other hand, I sometimes wonder if the side effects could become permanent if I do not withdraw from the medication quickly.I don’t think anyone can predict how a certain drug may react in any given person, so if you have a strange reaction, that isn’t listed by the drug company as a possible event, pay attention to it anyway. The individual is not always the norm.
• I have PSC and UC. People with this diagnosis have been known to have adverse reactions to standard UC drugs. I am now taking oral vancomycin and all my symptoms of both conditions, which really are one condition, have resolved. I have no side effects from the vanco.
• I have recently been rx’d uceris for a flare but am hesitant to take it at all because I do not want my UC to become steroid dependent and am conming out of the flare slowly without it.
• I have a friend on humira now who is doing ok it didn’t effect her like me. Just know your body and know everyone is different. Speak up for yourself and don’t give up hope! I’m now in remicade and completely symptom free!
• Pentasa suppositories caused inflammation and rapid beating of heart (actually thought I was having a heart attack).
• The only comment I would have is that I have found that if your side effect is a known side effect but less common, the doctors tend to believe that the medication is not causing your symptoms.When taking one medication, I basically lost all strength and was unable to walk further than half a block without resting and was extremely dizzy. I was unable to go to work for a week (this coming from someone you has never called out sick in 15 years).The Doctor did not believe me that the symptoms started when I started the medication and I got sent for several heart tests and Doctor’s appts.At any rate, my pharmacist said that he thought it was the meds and said to stop them right away. I was better in 2 days!!Just my experience.
• some headache… or tireness. or the pills are not digested.
• When they give Remicade a lot of times they mix in a steroid. The steroid on its own will fix most problems.Demand that you get straight remicade only. It is impossible to know if it works if they mix in the steroidI am 5 foot 9 and 185. It took 8 bottles of Remicade every 8 weeks. Each bottle was 500 dollars. That is 4k times 6 or 24k for a year. Mix I the steroids and you have no idea of what is working for what you are paying..
• Prednisone does weird things to my eye’s
• I had read that many people taking humira had skin condition issues. I have switched to simponi and hoping as I wing of pred that I stay in remission and skin stays clear.
• Prednisalone made my hair thinner but it grew back. It also gave me the runs when I first took it but that did settle down. prednisalone has caused or been a contributary factor in giving me Osteoporosis but then again..without that Medication i would have been very ill
• I take Lialda and was originally prescribed to take two pills daily. After my UC was under control I stopped taking the medication because I felt it gave me chess pains. The chest pains seemed to subside but when I told the doctor he cut it down to one pill a day, maintenance. I have not experienced the chest pains as when I took two pills a day.
• Uceris – ridiculously expensive.. did nothing to help after taking it for 6 weeks. no side effects
  Apriso – horrible stomach cramps after 5 days – stopped and never took again
  lialda – no help at all – no side effects noted
  prednisone – med speaks for itself – covers up symptoms and maybe stops the inflammation but to me not worth the risk: i.e., inc blood sugar, inc blood pressure, suppress the immune system and on and on
• Make sure you ask your doctor to monitor your white blood cell count during immunosuppressent drug use.
• We need to be an open comunity and be vocal about these meds, however I don’t like fear mongering. we can be scared about the side effects, but we need to know our bodies and trust when something does not feel right.
• Acne
• I was diagnosed with uc at age 29 & was put on prednisolone by the gastrologist who did my colonoscopy.to cut the story short i wish i was told of the side effects or did proper research before taking them. 3 years later i am steroid dependant as my body has been surpressed of producing it’s own steroids results in minor catarracts in both eyes,distorted blurry hazy double vision,osteopenia, shakyness,numbness,insomnia, so much weight gain from water retention, hair fallout, skin thinning,excess unwanted hair, very bad anxiety, chest pains, possible heart problems still monitoring this,emotional wreckage& crazy mood swings etc many more!
• Our disease varies SO much from person to person. Try your best to understand what is best for you. Talk to your doctor, ask lots of questions. Talk to your pharmacist. Research what you can, join online support groups. Change your diet – this may be the answer to take you off a lot of medication. Be open, be honest and never be ashamed of asking ANYTHING.
• Asacol really makes me break out. The good news is that it’s what prompted me to start the scd diet so that I could stop taking it, which I was able to do with great success. Now I just take it when I have a flare or if I’m traveling and what to be sure not to have a flare. All of this is with my doctor’s blessing.
• I have started taking turmeric and it is helping immensely!
• Prednisone –the worst of the worst.
• I experienced hectic headaches and Nausea and muscles and joint pain…extreme weight gain….and insomnia….however, after I stopped the medication…extreme headaches almost everyday en painfull spasms and pain in legs and arms has gotten worse………
• To counteract the side effects of 4month prednisone taper I drank 3 litres of water a day and hardly any salt in my diet. Result no weightgain or moonface and less aching joints.
• Since I was diagnosed in 2009 with ulcerative colitis, I have take prescribed medicines, and have had adverse and difficult side effects both times! At present, I am in the doldrums and depressed at why I cannot find a prevention/remedy/cure, for my disease state. I have tried medicines that have doubled me over with severe cramping that is so painful I felt like I would die instantly, and azothiaprine which had me throwing up all the time, even while driving; projectile emesis, that nearly caused me accidents while driving. Even throwing up in the shower. I have taken homeopathic medicines that have not assuaged the condition. Aloe vera, powders, probiotics, Chinese medicine to inhibit the bleeding, etc. Still, no cessation!!
• I don’t like side effects from humira at all. Make this your last option before starting it
• Asacol made my symptoms worse. More bleeding and cramping. Sulfasalazine made me sick to my stomach. Canasa makes me super gassy. But I still use them. Proctofoam did nothing. I have a sample of uveitis but I have not tried it yet.
• I started smoking again after quitting for a year. And got my life back it stopped the bleeding, stomach cramps waking up in the night chills fevers .im normal again!
• The only side effects I have experienced is amazingly loud wind with Pentasa tablets –
• Always report side effects as they an be horrific. And always ask I there is anything else you can take that won’t cause as many side effects.
• Lialda made me lose my hair. Thank goodness I had a lot of hair. Made me decide that if this med could make me lose my hair, what was it doing to my hormal balance, etc. I have decided to drop all meds and it has been 4 months on nothing but 10 billion probiotic when I feel I need one. So far so GREAT.
• The massive steroids I took never helped the U/C, just caused me to lose handfuls of hair at a time and gain belly fat.
• Check out efficacy of natural things versus a drug
• If you know something’s not right – start reporting it before it gets worse.
• I’ve reported side affects before, from medications, and from vaccines but don’t feel the responses are listened to. Would love if this was different
• I hate moon face from prednisone but I always follow through with my meds because that’s how I get ride of flares!

 

The End…

Thank you so so much everyone for participating and the next survey will be announced via the newsletter like always in the future.

Have a great May 2015!

And even if you’re poops aren’t hard and blood free, good luck in getting there in the coming days,

Adam