Some basics about me:
I’m a Professional musician for over 50 years, and an avid golfer, until recently.
Ulcerative Colitis Symptoms:
Extreme bloating and cramping after meals. Inability to expel gas. diarrhea and constipation. Mucus and globules of blood.
My Story
I’ve been dealing with UC for over 8 years and have been on Mesalamine (oral and or suppositories and enemas) for many years with some relief but never achieved remission. Also, Sulfasalazine, Canasa, tried Slippery Elm, Synogut, Chlorophyllim, other supplements, and a host of herbal and dietary regimes from FODMAP to SCD, although I will admit, I haven’t stuck to it as required. My Gastro Dr. rolls his eyes at my attempts to self medicate and has been suggesting Humira for sometime. My recent gaseousness, bloating and cramping have become almost intolerable so I have started with Humira. I am now at week 5, having done the 1st two initial doses (160 and 80 mg) and now started the bi weekly dose of 40mg. After a few days of the first dose I felt and tightness in my throat and chest, what I usually feel when I catch a cold, but the sore throat never manifested, although nasal congestion followed. I figured I had a cold. Doctor said it was OK to take Zycam and OTC meds which I did and It dissipated in about 9-10 days. After 2nd dose, the same thing, mostly in the evenings, and it has kept lingering. Now, I have taken my third injection with the same lingering condition. I stopped taking any OTC meds because there is no congestion or phlegm, just the tightness in my throat, sinus and chest.
I’m wondering if anyone else has had this reaction. I’m planning on sticking with the Humira for 8-10 weeks to see if my UC symptoms diminish before I make an appointment with my gastro Doctor.
So far, the results of Humira have been minimal. I’m hoping the cold symptoms are temporary but will consult with my GP and Gastro doctors if they aren’t. I will appreciate any feedback anyone might share.
Medications, Supplements, and other items I’ve tried:
Canasa suppositories, Lialda, oral mesalamine, mesalamine enemas, sulfasalazine, slippery elm caps, Chlorophyllim,
written by Duane S
submitted in the Colitis Venting Area
I was diagnosed with UC in 2013. Have had 3 or 4 colonoscopies.
I’ve been a professional musician for over 50 years, touring, playing and producing.
Hi Duane,
My daughter had the bloating and cramping after meals which turned out to be an allergic reaction to substances contained in ready-meals or sauces so she is now pescatarian, mainly vegetarian, no gravy, no coffee, no chilli, no msg, plain foods, and very careful in restaurants. My granddaughter had ulcerative colitis, mesalazine and mezavant for years. Suppositories were the most helpful in the end. She, over the years, went completely vegan and very careful of what she ate, two large meals a day. She was able to stop medication after 7 years and the UC resolved itself.
The side effects you mention of Humira come under the ‘less common’ side effects that need to be checked out with your doctor on this website. https://www.drugs.com/sfx/humira-side-effects.html From my family’s experience diet, avoiding meat and a calm lifestyle seems to have a lot to do with stomach problems. I hope you recover soon.
Hello Anne and thank you for your response. working on the diet and appreciate your input!
Hi Duane
I have had UC for the past 11 yrs. I have been through all the UC drugs and really only have 2 left that I can take. I am currently on Stelara and it’s working !! I was on Humira for 2 years and I too had the sore throat just about every day. I was blaming allergies for this but after looking at all the side effects of Humira, I realized that it was connected to that. I also had joint pain and headaches and fatigue. My skin was always broken out and I often had shortness of breath, which concerned me alot. Also heart palpatations, big time! It was scary. I did see a cardiologist and got the “all clear” so I knew all these effects were from Humira. I called my GI and asked for Stelara. That was last year and I have to say, I feel so much better. I also take pro-biotics and B12 and vitamin D. Don’t dismiss any effects you are feeling as they could be connected to the drug you are on. Also, be honest with your GI doc and do your homework on the drugs you want to try. All drugs have side effects but you will find one that makes you feel like a normal human again, and Stelara has done that for me. Also to help with stress you may want to look into medical cannabis. It does ease the stress which also calms the gut.
good luck with your quest to find remission!! You will get there.
Christine
Hi Christine and thanks for your response. Being over 50 and having some heart conditions, not sure Stelara would be right for me, but am going to GI next week for more info. I’ve been wondering if the sore throat I’m experiencing is a temporary thing or not. Looks like it wasn’t for you. Good to know. Thanks again
Hi Duane I started humira in October 2019 was Soper excited thought here was my cure. I had no problem with the loading dose. Then after a few weeks had really bad mouth ulcers a constant sore throat I took it for 5 months my joints use to pain soo much I use to cry. I’m a pharmacist and couldn’t cope at work lwhen I did my colonscopy in February my doc said no improvement and we should up the dose and start taking the injection every week. The side effects are crazy. I decided to stop them in February and honestly I feel much better. I think it’s individually based by cousin takes Humira for 15 years and she’s OK. This is soo tricky and frustrating hope it works for you and brings you into remission. Also my medical aid would not fund it soo was sponsored by the company but had to pay 30% which was almost 6 k from my pocket best of luck hope your treatment works
Thanks for your input Sohini. So now, you have stopped Humira and are feeling much better?? are you taking anything else?
UC patient for 12 years. Hospitalized symptoms so severe. Went thru all the mesalamines and immuran. No success. Tried humira with small success which quickly went away. Double dosed humira again with success that quickly went away. Tried Entyvio with great success that also went away. Starting monthly infusions, as opposed to 8 week span. Has been a miracle with absolutely zero side affects. Have been on the four week schedule for several years and so happy I tried it. Almost complete remission.
Thanks for your comment. Is it the Entyvio you are taking monthly or something else?
No luck with Humira.
Now on Entyvio last 6 years – MIRACLE drug
Every 6 weeks, with Misalamine
Thank you Chet. I will be seeing my gastro Dr soon to get his thoughts on this. Thanks for your response
I have had similar experience on Entyvio. It is a miracle drug for me too!
Entyvio infusion every 4 weeks. Normal dosing is every 8 weeks. Working great for many years with absolutely zero side effects. Easy 30 minute infusion.
Thank you for clarifying and your response
I have had UC for 40 years,, Humira completely controlled my symptoms into remission for 5+ years then symptoms begin again. Was switched to entyvio bi monthly along with treatment from functional medicine practitioner, eating, clean whole foods, including meat, lots of yin yoga and have achieved remission again. No side effects with either drug.!
Wow Good for you Holly! Thank you for your response!
Thanks for your input WP.
Hey Duane, Sorry to hear of your troubles. I’m very concerned about your symptoms and that your doctor disregarded them. They sound a lot like angina. Have you seen your GP or gotten an ekg during any of these episodes? I know that you are relating them to your humira injections, but they may have nothing to do with it. You should really have a referral to a cardiologist just to check it out. Just fyi, I am an ICU nurse.
Good luck to you.
Thank you for your response Wendy. Will do
Hi Duane,
I’m sorry for what you have been going through. I have been dealing with ulcerative colitis for a little over 20 years now. I started taking Xeljanz a few years ago and have been in a mostly constant state of remission. Only a few flares and when they occur the flare is extremely mild lasting for only days to a week or two. The flares occurred only when I had the flu or Covid and had to go off the Xeljanz until I had recovered. It may be worth a shot. I take 1 5mg pill twice a day. No needles. I hope that it will work for you.
Thanks for your response Jamie. I will bring it up with my gastro Dr. next week.
I have had every medication you guy’s named except Entyvio with only temporary results, the only thing that helps me the most is diet, haven’t figured out a specific one or pattern of food consistency that solves all my problems, but controlling what I eat has helped me tremendously but I always cheat and eat things that I know could possibly cause a problem. I’ve been with Adam for ten years or close to that and he helped me tremendously specifically when I was new to this disease and green about everything trying my best to stay off any medication specifically Entyvio because I think one of the side affects is brain damage don’t need any help with brain problems this illness is enough to cause that. If anyone has any up to date advice on diet please send it to me.
Best Wishes everyone
Our problem is all inflammation so an anti-inflammatory diet is the right direction. Try reading Steven Gundrys Plant Parodox! You will get the idea,
Thank you for your response Holly. I will check it out!
Thank you for your response Larry. I’m like you although I am trying to eat somewhere near the FODMAP diet, and eating more dense foods… salads dont work for me because I ingest a lot of air which causes the gas and bloating. Still looking for what all does work.
Thank you for your response Larry. I’m like you although I am trying to eat somewhere near the FODMAP diet, and eating more dense foods… salads dont work for me because I ingest a lot of air which causes the gas and bloating. Still looking for what all does work.
I’ve not taken Humira , but was on Remicade successfully for 2 years. Gained remission, and was symptom free for 8 months. Unfortunately stress combined with other health issues has thrown me into flare , I’m currently trying to tame it with food choices ( lots of kombucha & cooked vegetables & fruits in smoothies ) , lifestyle , and pre and pro biotics . I think maybe a medication change could be what you need ? I understand side effects are common and seem the lesser of 2 evils when it comes to UC but this sounds like an most allergic reaction ? I went through several medications before finding Remicade successfully. Good luck Duane .
Hello Duane, I pray you find relief! I’ve had UC since 2001 and like you was on the triple threat of mesalamine- oral, suppository and rectal. This regimen had been hit or miss, I’d still tend to see flares. What has helped the most: a month of Uceris (a rectal foam steroid), strict SCD , Visbiome probiotic, psyllium husk fiber a spoon a day in water (brand Yerba Prima), and as crazy as this sounds Reiki and Energy Healing, – the books by Louise Hay about healing the body.Loise Hay talks about each symptom and part of the body is a manifestation of a symbol. And once I took an honest look at my life I realized that I had some insecurities to deal with. Long story but hope you find relief because UC is no joke.
Thank you for your response Susan. Im working on the diet
Edit to say UC since 2011 not 2001.
Hey Duane,
I’ve had UC since 2012. Started with Lialda, rectal suppositories, both steroid and mesalamine based. Horrible side effects with little remission. I was in mild to moderate flares for over a year and a half. I started using a nicotine patch and switched to Apriso. Within 2 weeks, I had solid stools, going to the bathroom 1 to 2 times a day. Been in remission ever since.
Hello Dallas, My last medication is the generic of Apriso (as far as I can tell) which is Mesalamine ER .375 (extended release) which didnt do much… but this is the first I have heard of a nicotine patch. will do some research. Thanks for posting
I had a similar situation with a UC drug and its 0.01 percent patients have the side effect. The drug Remicade, the side effect drug induced lupus. Even though my colon didn’t turn on me with a flare, I ended up in the hospital. My inflammation markers through the roof. If I didn’t get to the hospital when I did, I had a Remicade infusion scheduled days after. My gastroenterologist switched me to Entyvio (every 6 weeks). The lupus symptoms dismissed after 6 months. I’ve been in remission 5 years and counting. I thoroughly read everything and anything in side effects on Entyvio. I fully understand the ramifications of taking this drug. It is a beneficial drug which targets the colon not the whole body which is what Remicade and its cousin Humira do. Please don’t wait to speak to your gastroenterologist or seek a 2nd opinion.
Thanks for your reply and concern. Glad you are better!
Hi Duane! I started Humira back in May and since July I’m been on remission with any single UC symptom. Maybe your case could be even simpler, with the dosage of Humira, your defenses are nearly as low as 0% making you immunocompromised, so any cold out there you may/will catch it :/
But again, we aren’t doctors, just patients telling our story and every body reacts in a different way, hope you’ll get well soon!
Thanks for your comment Eric. Looks like your remission came at about 8 weeks. Are you still taking the Humira?
Yes I am, every 2 weeks I’m taking a 40mg shot (also started with 160 then 80). I’ve been diagnosed since 2009, this is the first time I’m been 100% on remission, hopefully you’ll achieve this state as well!
Thanks for your response and info Eric
Hi Duane
First off let me say that I’m so sorry you’re suffering with this disease. The vast majority of people don’t realize how debilitating it is; I suffered through it greatly, and finally elected to have J-Pouch surgery after going through a plethora of treatments which included Humira. With the realization that some treatments work for some people, but not for others, I must say I was not a fan of Humira; it worked for about a month, but then went the way of all of the other treatments I endured (the last being Remicade) failing to improve my condition while subjecting me to negative side effects. Humira made me nauseous on a daily basis; it also became the gift that keeps on giving as I ended up with a case of Shingles while on it so I don’t have many good things to say about it. I wish you success in your journey and hope you can find something that works for you; wishing you optimal health.
Scott
Thanks for your comment Scott. Two questions for you… You say it worked for a month… how long did you take it before it worked? and when did the shingles occur? Thank again and Hope your J pouch was the answer for you.
Hi Duane – It was about eight years ago so my memory is a little spotty but I think it took at least five or six weeks for it to really kick in but again the improvement seemed to only last for about a month or so. Shingles kicked in shortly after it stopped working, so that would’ve been about three months in ……..
good to know. Im headed into week 7 and have some relief but will be monitoring closely. How are you feelling about your J pouch decision? Thank you Scott
Hey,
My daughter is going through Hyperbaric Oxygen Therapy to treat her UC. It’s also called HBOT. Have you heard about this? Not many people know about it. I’ve researched the heck out of the science behind this and how and how and why this works. She is halfway through treatment. Happy New Year!
I have not heard of this but will check it out .Thanks for your response Cindy and I hope it works well for your daughter.
Hi Eveyone,
I’ve had UC since about 2014. Started off on regular meds and then graduated to biologics. Was on Humira for years until it stopped working. During my Humira time I did experience a heart attack in 2019. The worst heart attack imaginable 100% blockage the widow maker. I was lucky i was in good health and at my local gym that day which was 10 min away from a hospital or I would have been gone. No one would or could tell me Humira was a contributing factor. When Humira stopped working I went on stelara for under a year. Then stelara stopped working. Then went on Entivio every 8 weeks then to every 4 weeks. Now it’s stopped working after about a year. I am concerned I’m ruining out of specialized treatments. Now I’m about to start Rinvoq. You take a tablet once a day. Has anyone experienced Rinvoq? I also noticed it’s not on the medication glossary for this website. I pray every day science somehow finds a cure or something that will always work. This disease needs more awareness in my opinion. Thanks in advance.
Sorry to hear of all your ordeals Paul. Of course, we know there may be many other contributing factors to the blockage causing a heart attack, but happy you survived the ‘widow maker’. I ve certainly heard of Rinvoq but never taken it. More awareness is certainly needed!!
Hi Duane
I was diagnosed with UC in 2014. For the next two years I went through a numer of medicines none of which worked. Had severe flaring, was off work for a month and finally mid 2016 I was put on Entyvio as a last resort. At the same time I changed to the Specific Carbohydrate Diet. The following link gives some good advice about the diet – could have used that when I started out :)
http://www.cantillonkitchen.com/common-pitfalls-of-the-specific-carbohydrate-diet-scd/
I have been in remission since 2016 – a few minor flares caused by either going too crazy on nuts or stress or a combination of these. When I do get a minor flare I can always control it within a few days by eating soup and cheese cake (part of the basic diet that you initially start on when commensing the Specific Carbohydrate Diet). I have started drinking coffee which I am not supposed to – that also doesn’t help the stomach. I receive my Entyvio infusions every 8 weeks along with having blood samples taken. I have recently been offered a pen for injection so that I can do this without going to hospital but would still need blood samples every 3 months.
Hope things work out for you
All the best
Ole
Really appreciate your comment here Ole, and thanks for sharing how things have gone for you and what you do when things start to go downhill.
Much appreciated and best regards, Adam
Wow , soup and cheesecake. Hadn’t thought of that. Thanks for your comment Ole! Continued good health!
Hi, no good news story from me unfortunately. My husband is still struggling with flare ups of his UC.
I just found this website and wondered if any of you have come across it or tried this therapy: Evinature.com using qing dai and curcumin. It is run by a gastro professor and team including MD’s. I’d be interested to hear from anyone who has tried it.
Blessings, Jane