Introduction:
I am 29 years old and I was diagnosed with UC in August of 2010. I am from Houston TX and love it here.
Some more about me:
I like to stay fit , travel , love to ride motorcycles, i love outdoors like running hiking and stuff. Also love to read. I also like to cook different kinds of cuisines but recently not cooking anything i am not able to eat.
Symptoms:
currently experiencing loose bowels and bleeding
Help Me Get Off Prednisone
I was diagnosed about 3 years ago, prior to that i never really had any symptoms the reason i went to a GI was because i felt like i could not digest my food and i would throw up almost everyday. The doctor right of the back did a colonoscopy and then gave me a flyer full of information about ulcerative colitis. At that point i did not had any severe symptoms and the doctor proscribed me 2 lialdas a day. Six months after that I went to Cuba and came back and was feeling extremely sick 10 to 15 bowels a day with blood. At that point i tried natural remedies to get things under control ….acupuncture, homeopathic ,u name it i tried it all even Chinese herbs , nothing could stop the bleeding. I lost about 30 pounds and the doctor gave me prednisone. That got things under control and since then i been fighting to get off prednisone but failed every time.
I tried to taper in every possible way but as soon as i go below 10 my symptoms return. My GI also introduced this other steroid called budesonide about 4 months ago and told me to taper while being on it but yesterday i tapered from 10 to 7.5 and yet again loose stools then bleeding. Along with these medications i also take vitamin supplements and lialda and budesonide nothing really helps me to get off prednisone. Its amazing how things changed for me overnight. I went from a perfectly formed stool to watery blood.
Whenever I see blood it just psychologically breaks me down
and I start feeling hopeless.
I was never on a very high dosage of prednisone i always started at 40 then went down every 2 weeks but mostly at 15 which kept me just fine. Help me people any suggestions for me. I tried EVOO also Bev’s l-glutamine powder and probiotics… seems like there is nothing i can do…i feel like the only thing that gets things under control is our beloved prednisone. I also never had any side effects from it other than pimples on my back.
Medications:
currently 7.5 mg prednisone
lialda
budesonide
multivitamins , vitamin D
written by Hammad
submitted in the colitis venting area
my name is Hammad i am 29 years old and i was diagnosed with UC in August of 2010. I am from houston TX and love it here.
They had me stay on 40mg of pred for 3 months (not fun). I did try to taper sooner but that was a stupid idea. It die work (along with Remicade). Anyway, after the 3 months I tapered town straight to 20, then a week later 15, then a week after that 10, then a week after that 5, then 3 days after that 2.5 and 2 days after that DONE with no side effects or flares. Try this, it worked for me but everyone is different. If that does not work talk to your Dr. about Remicaide, I’m also on that and I think it’s working pretty good on it’s own. You will need to sign up for the Remistart program if you do, it pays for everything your insurance does not except for $50. http://www.remistart.com/
Good luck!!
Hi Hammand
I’ve had UC since I was 7 (am now 30). I started on steroids like prednisone, and then moved on to a maintenance drug (asacol). The thing I’ve found with steroids, is that they are only a band-aid fix after awhile of being on them, not only do they have terrible side effects (hair, pimples, rage) but you have to keep upping the dose (this is so bad for your body). Maybe talking to your healthcare provider about finding something for maintenance, that might help to stabilize you.
Hi Hammad,
Sorry to hear you are stuck on prednisone. It is definitely the worst. Like you, I get stuck on prednisone where every time I tried to taper down, I would flare up. Every 5 mg drop caused symptoms to return and I would be sent up two levels (additional 10 mgs) and then try to taper again, only to fail at the next threshhold. During my last flare up, I got stuck on prednisone (40 mgs orally plus 2 cortenemas daily) for 11 months and had horrible side effets. The only thing that actually got me off of prednisone was Imuran (100mg daily) It really has given me my life back and I have been symptom-free and off prednisone and the other steroids for over a year. I am also on Asacol HD (2 tablets 3 times a day). If you are ok taking meds, I would recommend talking to your doctor. Sounds like you are becoming steroid dependent and they may need to give you something else. I was very afraid of starting Imuran due to the potential side effects and horror stories you can find online, but like I said, it has worked wonders. Good luck!
I feel you on getting broken down every time you look in the toilet and see bloody mucus. It’s very disheartening. When I was released from the hospital after my flare I was put on 40 mg of prednisone, and that still didn’t completely stop my flare. I had loose, watery stool with some blood but not to the degree like it was before. It was some improvement, but coming from bloody diarrhea occurring at its worst 20+ times a day, what isn’t an improvement? I also had trouble tapering and could not get below 20 mg without going into a full flare. I did add the l-glutamine and probiotic, which seemed to help a bit, but couldn’t quite get me over the hump.
Finally, I decided that I would go Makers Diet to help taper me off, because I was running out of options, and the prednisone was really working me over mentally and physically. However, before I committed to that I read some testimony on another site about the sunflower butter/spinach diet and decided to try that. I did it religiously for about three weeks, and saw an improvement within a week. I’ve continued to do it, though not as intensely, and it helped me successfully taper the prednisone and go into remission. My doctor thinks that it was just a coincidence, and my body just finally started to respond to the prednisone. All I know is that when I started eating the spinach and sunflower butter, that was the first time since my flare that I had well formed non-bloody stools.
So far I’ve been able to remain in remission, though I do know that stress, in my case, is a definite trigger.
I hope you’re able find something that works for you!
Thank you so much for the input. My doctor been talking about starting Imuran pity soon, its just that i wanted to try all there is before jumping on the next step. I do think Imuran is the next step but the doctor also warned me that it kills fertility in men. But when i researched, i found out that the research has only been done on rabbits …lols not actual humans. Anyway also i had a food allergy test and i avoid everything my gut is allergic to. The diet i follow is called the elimination diet where mostly everything is baked chicken or plain brown rice. Not the Friend rice because it contains soya sauce. I just get so scared to jump on the next set of medication knowing my condition is only 3 years old.
Kelly with u being on Imuran did u needed monthly bloodwork so make sure everything else like liver and bladder functions are in order ??? thats what i heard that with Imuran i would need regular blood work.
Hammad
You will be able to eliminate the prednisone when you start the imuran. Yes, you have to get regular blood testing to ensure your liver enzyme levels are not altered by the imuran. FYI, I’ve had UC since 1991 and the only way I was able to obtain remission for a seven year period of time was using an immune suppressing medication. GOOD LUCK!
Hammad,
On – May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC). I am on High doses medication, seems like bleeding is stop and diarrhea is now almost to 3-5x vs 30+ a day. well, I also did a lot of research and following the SCD diet based on “Breaking the Vicious Cycle by Elaine Gottschall” I had to accept the fact it’s hard to follow but we need to do what we need in order to recover from this unwanted disease, also I start to learn how to cook and make my own yogurt using Yogourmet maker. I am currently on prednisone as well from 60mg to 15mg now along with Asacol HD 2tabs 3xday and Canasa 1000mg also some probiotic and supplements may help you as listed below.
VSL#3 DS-(20 Pack) – Prescription Only
Non-dairy Saccharromyces Bolardii+Mos probiotic,
Theralac (bio-Replenshing probiotic),
Vitamin D,
wheat and barley grass shot (I use powder)
Omega 3 fish oil, and
B12.
Good luck Hammad and keep us posted on your progress but most definitely I would not go to hospital and giving SCD diet and medication a chance first.
Hammad,
This may come out of left field, but you might want to try a decent dose of nicotine through a patch or nicotine gum for at least a month. I suffered for a very long time with loose, bloody stools. Sometimes it was straight mucous and blood up to 20 times a day at its worst. I was desperate–I tried diet and took my medicine as the doctor prescribed–no dice. I started doing some research and came across how nicotine can be beneficial to folks with colitis. Just go to Wikipedia and type in “nicotine” and read all about it. Within one week the mucous and most of the blood was gone–having about 4 to 5 solid bowel movements a day. Within 2 weeks, I was down to 3 solid brown poops in the morning. Now, about 2 months into it, I have 2 solids in the morning–boom! Remission. I would suggest giving it some time to get in your system before deciding if it works for you. Also, at the same time as I started nicotine therapy, I added a strong dose of Vitamin D (a natural anti-inflammatory which helps regulate the immune system), B-12 (liquid form), and a 30 billion probiotic from Renew Life–that combination put me over the hump. I still take 2 Lialda’s a day and a nightly Rowasa. This is just a suggestion. Hope you get to feeling better soon!
Thank you Dallas for your kind suggestions…well I am a smoker so I get enough nicotine ….the bleeding and mucos stood within 6 hours of 20 mg prednisone but the problem starts back up when I taper it below 10.mg ….I just get so dishearted every time
Hi Hammad. I too had trouble getting off Prednisone but only when I dropped below 5mg. I would start out at 60mg and drop 5 every week until I got down to 5 and then the bleeding would start up again. The last time I tapered I went from 10 to 9, to 8, etc for 5 weeks until I got to 5 and then dropped 1/2mg after that. The really slow taper worked. Your body makes 5mg naturally but when you take high doses it quits making it and the adrenal gland goes into a dormant state. That is why you need to taper extremely slowly, to allow you body to start producing it on it’s own again. Have you looked into the SCD diet? Have you read Breaking The Vicious Cycle? You need to get the bacterial imbalance under control and once you get to where you are the only way that you can do that is to starve out the bad guys. I hope you feel better soon man! Keep your chin up. You will come through this a stronger and better person.
Don
Don
thanx a lot for some wonderful ideas…i would try to go down that way next time but its kinda hard to cut the little bitt prednisone into five pieces…i usually have 5 mg tablets so the most i have ever done is cut them in half. As far as diet i usually eat the same kind of meal …i stick to chicken , boil rice, some vegetables and just beef stew. thats about it. Its called an elimination diet which my doctor has me on after taking a food allergy test. The things i am allergic to i dont eat. No alcohol or beer either. Well mostly been living on air and water …i told my doctor i been eating so much chicken i wont be surprised if i grew some feathers. Just frustrated with this disease …hope to live normal again.
Hi Don,
Our son is having a two month flare. We tapered off the prednisone one gram at a time but the flare seems to be stalling. How exactly did you taper down over five weeks. He did start the scd diet ten days ago. We really would appreciate your advice.
Thanks! Rodney
The only way I could come off prednisone was with Humira. All other medications made me very ill.
Hammad,
I have the same thing going on mate. My specialist, however, advised that if you stay below 7.5mg daily of pred then you should not suffer any ill effects (I think your body produces that much naturally?). I have been prescribed “Methotrexate” to get me off the pred but I think I might be allergic to it. You may wish to discuss this with your doctor.
She’ll be right brother!
Cheers,
Peter
Hi Hammad,
I started off with weekly blood tests for blood count and liver functioning. After a few weeks, I went every two weeks, then monthly and then every two months. Now I am every 3 months, which they will keep me on (i order a 3 month supply through the mail order pharmacy,so it works out well). In the beginning, my white blood cell count was through the roof due to the extended time on prednisone, so they really wanted to monitor it as it came down. Your doctor should order a TPMT test before to see if you are in the small percentage of people who don’t metabolize the drug correctly. Those people carry the higher risk of anemia, etc. The blood tests in the beginning can be a bit annoying, but I was so happy to finally be tapering successfully that I think I would have gone every day if they asked me to. Keep in mind Imuran can take a bit to get to a therapeutic level so you may need to be patient. They started me on a high dose, so it seemed to kick right in. Good luck!
Hammad:
I have been off of Prednisone for 4 months now and have been strictly following the SCD diet since. My symptoms on Prednisone included night sweats, bad migraines, joint pain specific to my ankles and agitation issues. My doctor recommended Remicade but after researching the SCD diet, I decided to go “Cold Turkey” on the drugs, fired my doctor and now in four months my symptoms are a 4 out of 10. I am slowly improving. I think the drugs act immediately but my hope is the diet, which brings the bioflora of the bowel back into balance, just takes more time to improve.
So I am committed to the diet for the full recommended year. I still have pain, bleeding, mucus, etc. but at a level that is manageable. I have good days and bad days.
I suggest doing some research, but for me the “ugly dragon” was Prednizone… I would rather live with UC. The prospect of a life long reliance on Remicade was the last straw…
Hey how are you hammed I totally understand right now how u feel? Let me tell you something I have ulcerative colitis too I don’t get off yet from the prednisione the same like you no any medicine make me just prednisione two years ago I was diagnose with ulcerative colitis when I’m off sometimes of prednisone I star with the same symptoms and blood in the stools and everything now I’m trying to go with natural things go to a website call underregular.com and it will tell u how to do a natural juice that I think it will help ou a lot try it
Take care I hope ou feel better
Hammad,
There is a huge link with leaky gut and IBD. Infact leaky gut is associated to various issues like autism, MS, RA, Parkinson’s.
I am very much under the belief that this cause is partly due to a microbiota imbalance, some of these bacterias toxins can desolve mucus allowing pathogens through to the cell walls. I sense this needs to be addressed with us all, in some it can cause a constant flare.
When this occurs the t junctions are compromised and so things like l Gutamine, zinc, berberine could well start the process of securing them t junctions and shutting the ‘leak’. This can be better achieved with diet but I know it’s difficult to recommend diets to people so I can only suggest it with the other supplements. This combination has got me off prednisone twice and on other flares I got back to remission, this is on times when I didnt want to take prednisone to help.
Once this is addressed, than is allowing the healing to occur. Again diet is great for his, but to make sure long term I sense to minimise UC I think FMT will be the answer. As good bacteria won’t create sure a defence response from immune.
This is my opinion, i am not a doc. I advise based on what I have tried and seen work/not work for my body and what my theory of IBD is and where to go with it. Still a lot to learn but for now, the above gets me off prednisone
Yes my husband was taken I Iran a few years back and he ha low sperm count we have to do IVF for our second pregnancy . First one he wasn’t taking yet , yes doc said low count due to Imuran. Now in remicade for a year no flares but since last 3 months is back on steroids
Thank you Lula for sharing that information
Can relate to your story totally. Curently on Prednisone wean and don;t think my body can tolerate it. So sad, I wanted to avoid Remiacid, but now it seems like that is the only option. Hang in there, you are not alone. Such a crazy condition to have.
Thanks LC for the comment , doing much better now started taking imuran and am currently on 2.5 mg of prednisone.
Have you considered LOW DOSE NALTREXONE?
IT HAS BEEN A MIRACLE FOR MY SISTER WITH UC. Good luck.
7.5 mg will still cause osteoporosis in long run. the longer you stay on steroids the longer in take to taper. Change the dr.!
You may try Uceris it’s a local steroid developed specifically for mild- moderate UC, didn’t work for me because of very unusual reaction :(. if you can switch to it you don’t need to taper from 7.5 mg, you can just drop it.
in 2012 it took me 4-5 month to taper off from 40 mg :(
I was dropping about 10% of doze in 5-6 days. once I got to 7 mg I went very slow. I switched to 1 and 5 mg pills for ease of counting. And I was tapering 1 mg till reached 4 mg. Then I split 1 mg in a half pill and continue tapering at 2. mg daily doze I split pills into quarters. it was not easy and they were not even, but it was ok. I stopped at about .5 mg. That’s how doctors direct patients to taper in Russia.
I didn’t have symptoms for 3-4 months after taper.
Also at some point i started using generic Balsalaside.
Currently on 3×750 mg x3day Balsalaside. GF, dairy free diet
Still have very mild symptoms.
I plan involving the rheumatologist since this is an autoimmune disorder.
To reduce loose stools fiber intake needs to be limited to 13 grams/day.
Good luck