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How long have you taken prednisone?

I have been diagnosed with Crohns for about 10 months now. I have tapered off of prednisone two different times. Within a week of both of those times, I had a flare up. The only thing that seems to work is prednisone. I was wondering how long different people have been on it and what dosage they took. Unlike many others that take this drug, I don't have any immediate side effects. I'm going to my GI tomorrow to see what he says about it.
 
Hey!
I was put on IV steroids, followed by pred tablets at 40mg a day in early December.
I slowly tapered off, finishing the treatment just two weeks ago. However, my symptoms never really went away and got worse as I tapered off and so I am now back up to 30mg.
So thats 4months. I think this is the longest I have been on it.
Are you on any other treatment?
x
 
I am taking humira once a week and azathioprine every day. My last taper off of prednisone was a 4 month one. Then a week after a stopped taking it, I had a small flare up yesterday.
 

nogutsnoglory

Moderator
I moved your thread from diets to this sub-forum since its prednisone specific.

I was on it for several months many years ago but don't recall the dose. It rendered me disabled though. I couldn't move for weeks I was so tired and it damaged my bones.
 
The longest I've been on pred at one time is 4 months. But I've been off and on it for the last several years. Like you I experience few side effects(some insomnia, mild moodswings). All the GI's I've seen have been very hesitant to keep me on it for longer periods, even though I haven't responded well to other treatments.
 
Hi Izo :bigwave:

I am no longer on Prednisolone and haven't been since my proctocolectomy in 2000, but I was on it almost continuously for 25 years before that. We tried the alternatives that were available at the time - Sulphasalazine, Imuran and a couple of others - but none had any effect on my Crohn's, whereas Prednisolone did reduce the symptoms.

After a while I was allowed to adjust my own dosage according to my symptoms but was, of course, checked frequently by my GI. I varied between 5 and 50mg a day, always adjusting slowly when reducing the dosage.

I was a bit puffy in the face, but not so that anyone noticed it until I stopped taking the Pred, when my face dropped in and everyone commented on how ill I looked. :D My skin became very thin and I had to be careful about scraping it, but it has now gone back to normal (except that it looks much older - but then I am much older.:eek2:)

I do have fairly advanced osteopenia - not yet osteoporosis - in some places, but I am a 70-year-old woman, so it's not something out of the ordinary. Having said that, I have never had a fracture or a break of a bone and I am fairly active.

Being on long term corticosteroids is not something that I would recommend and these days there are many more alternative drugs to try, but sometimes it is still the best that there is.
 
Went to the doc today. He is increasing my azathioprine (Imuran) by 50 mg and he's letting me take prednisone for a couple more months. I need to do this so I won't miss any more days of work in order to receive FMLA for my job in May. He said if I come off of prednisone this time and have a flare with the increase in azathioprine then I may have to have surgery.
 

CrohnsChicago

Super Moderator
I have been diagnosed with Crohns for about 10 months now. I have tapered off of prednisone two different times. Within a week of both of those times, I had a flare up. The only thing that seems to work is prednisone. I was wondering how long different people have been on it and what dosage they took. Unlike many others that take this drug, I don't have any immediate side effects. I'm going to my GI tomorrow to see what he says about it.
I have been on it for 7 out of the last 12 months. Same story as you. I flare, it gets things under control and then within a month or two the flare comes back. Pred is the only thing that helps. And it's the only thing that has stopped the bleeding so far.

I started 6MP this February because I don't want to continue having to rely on prednisone. Pred works, but the short and long term side effects of prednisone are loo long to list and are too much for me to want to worry about dealing with. I am currently tapering now and I can't wait to be off of it hopefully for good.
 
In my 14 years of Crohn I had corticosteroids (not always pred) 5 times but never longer than 2 months and actually mostly only a few weeks to treat flare ups.

The unfortunate thing is that your body gets used to pred and thus phasing it off is problematic if you take them for many months. It's good your doc increased the aza, how much do you take now after the 50mg increase and what's your body weight? How is your white blood cell count?

Do you have any other deficiencies, for instance vitamin deficiencies, magnesium, iron etc.? Are you on a good diet right now respectively do something for stress relief?

I am just asking because before anyone should talk surgery you just think about everything you can try to get your inflammation under control, meds are only one part of the puzzle.
 
I am now taking 150 mg of azathioprine along with one shot of humira a week. My white blood counts are good. I get blood tests done every two weeks while taking azathioprine. I have changed my diet a lot since being diagnosed. My GI told me that what I am taking now is for treating serious cases of crohns. It's not a definite that I will have surgery after this taper. He would want to do a colonoscopy and/or small bowel series before determining whether or not I need surgery.
 
I am now taking 150 mg of azathioprine along with one shot of humira a week. My white blood counts are good. I get blood tests done every two weeks while taking azathioprine. I have changed my diet a lot since being diagnosed. My GI told me that what I am taking now is for treating serious cases of crohns. It's not a definite that I will have surgery after this taper. He would want to do a colonoscopy and/or small bowel series before determining whether or not I need surgery.
150mg at what body weight? Normally it should be 2 to 2.5mg per kg body weight or around 1mg per pound body weight.

When you say your white blood cell count is good, do you mean it's in the normal range or it's at where it should be due to aza (at the lower end of the range or slightly below)?

I asked about your diet, because given that you still have inflammation you could try certain diets that could seriously help with inflammation. In terms of getting to remission, you know, meds are about 50% of the way if not less, the rest is diet, stress relief, other deficiency treatment, etc. after I was diagnosed in 1999 I also didn't realize meds are just helping to notch me towards remission, but to really head into remission you need to work your Crohn.

As to surgery, I had one in 2003 and that was due to two strictures. I would never recommend surgery ever to anyone simply because of inflammation - strictures or blockages seldomly can be remedied without surgery, inflammation on the other hand is pure Crohn management and surgery has no place in the discussion there... At least in my view and in the view of the various GIs and surgeons I talked to in the last decade.
 
150mg at what body weight? Normally it should be 2 to 2.5mg per kg body weight or around 1mg per pound body weight.

When you say your white blood cell count is good, do you mean it's in the normal range or it's at where it should be due to aza (at the lower end of the range or slightly below)?

I asked about your diet, because given that you still have inflammation you could try certain diets that could seriously help with inflammation. In terms of getting to remission, you know, meds are about 50% of the way if not less, the rest is diet, stress relief, other deficiency treatment, etc. after I was diagnosed in 1999 I also didn't realize meds are just helping to notch me towards remission, but to really head into remission you need to work your Crohn.

As to surgery, I had one in 2003 and that was due to two strictures. I would never recommend surgery ever to anyone simply because of inflammation - strictures or blockages seldomly can be remedied without surgery, inflammation on the other hand is pure Crohn management and surgery has no place in the discussion there... At least in my view and in the view of the various GIs and surgeons I talked to in the last decade.

I weigh 172 pounds and the day before my last flare I had baked fish and a baked potato. I drink a lot of water and Gatorade (when I'm active) every day. I have cut out a lot of fried food, but still every once in a while eat some fries or so. Haven't had a greasy fast food burger in a long time. I cut out lettuce, nuts, high fiber foods, sodas, etc.

I also take turmeric and fish oil daily. What does everyone recommend for vitamins, probiotics, etc.?
 
At 172 pounds if your leuko count doesn't go down into the 4k per cubic mm range, you could eventually even try to go to 200mg. 100mg was definitely pretty low.

Personally a backed potato when I got inflammation isn't the best food out there (it gets even more problematic with sour cream and even more with garlic sour cream...). If that backed fish is backed with bred crumbs etc., it would be a no no for me any time...

Vitamin therapy has been shown with quite a few people, me included. It's basically a combination of D3, B6, B12, magnesium, potassium, zinc, iron, calcium and some folks even take more. The point is that apparently lots of deficiencies can have a negative influence on Crohn's. Taking supplements also can't really hurt so there is no real problem with trying (benefits might, however, only kick in long term).
 

UnXmas

Banned
I have been diagnosed with Crohns for about 10 months now. I have tapered off of prednisone two different times. Within a week of both of those times, I had a flare up. The only thing that seems to work is prednisone. I was wondering how long different people have been on it and what dosage they took. Unlike many others that take this drug, I don't have any immediate side effects. I'm going to my GI tomorrow to see what he says about it.
Just to warn you, it's possible you might get bad side effects after staying on prednisone a while. I thought I had no side effects whatsoever at first. But they sort of crept up on me over quite a few months, until I suddenly realised I was feeling absolutely awful. And I'm sure you know there are long term side effects like osteoporosis which can develop over months of prednisone use.
 
I just finished a 6 week course of pred. I wasn't experiencing bad side effects, but was ready to be off it b/c I felt the side effects were starting to get worse when I finished.
 
I was first diagnosed in 1974 at age 14. The doctor started me on Asulfadine, which never helped at all. Later that year I was put on Prenisone. I've been on and off Prednisone since 1974. (Probably more on than off.) And, after a year on Entocort, I had a recurrence where I was put back on 40mgs per day of Prednisone.

I have a love-hate relationship with the drug. It is the only thing that puts me into remission, while Humira keeps me there (for the most part). But, it screwed me up in many ways. People talk about the effects of Long term Prednisone use but rarely talk about psychological impacts.

On the positive side, the energy it give you helped me get through college and graduate school. Who needed to sleep? I could get up at 4am, study, go to classes, work full time, come back home and study until 2am, then go back to sleep for 2 hours. It's all I needed and it worked.

But, as a 52 year old male, I developed Osteopenia, the precursor to Osteoperosis from decalcification of my bones. My brain chemistry has been permanently altered, resulting in chronic depression, anxiety and OCD. These can be controlled to some degree by medications, but not completely. When I'm on Prednisone I'm moody and irritable, lash out at family and friends, and sometimes do things I know to be wrong, not seeing the ethical problems until someone bothers to point them out to me. Then, depression kicks in.

So, those are my Prednisone experiences. It is wonderful for putting Crohn's into remission. But, the downsides far outweigh the good when you consider long term use of the drug.

Get off of it as quickly as you are able. Don't let the euphoric feelings it gives you mislead the dangers.
 
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