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Unsafe use of prednisone?

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Posted 11/11/2008 9:10 PM (GMT 0)
I've been taking prednisone for 2-3 months for a flair up and haven't been successful in reducing the symptoms. I dosed down to 0mg for about 5 days but one evening everything seemed to be getting worse again so I took 20mg for a few days and my doctor wanted me to taper down from that again, so I've been tapering down since then but the flair hasn't gotten any better. The past few days I took 40, 30, 20, and now 10, and didn't really notice any improvement. I'm going to be moving and starting a new job so I'd just like to knock this out at least for a few months; I don't even care about prednisone side effects anymore. Is it safe to keep going up and down with the doses like this? I wouldn't mind just going back up to 40mg and staying there until I improve but I'm not sure if the roller coaster of dosages is safe. My doctor ordered blood tests for azathioprine to see if theyre able to increase the dosage on that, but I think that test takes 3 weeks for results... Does diet really make a difference with UC? I've never really noticed much difference, although I'm sure greasy foods can't help any. I've had UC on the first 60cm for about 3 1/2 years now and I'm already to the point of just getting surgery since the only thing that really works (or doesn't) is prednisone and it seems like a pretty barbaric drug.
Posted 11/11/2008 9:41 PM (GMT 0)
I think you might be tapering down too fast, and I would do what you suggest and stay on a higher dose for a while if it were me. I don't think going up matters, it's coming down that needs to be very gradual. What else have you tried, asacol?
It's funny, some GIs rely on prednisone too much maybe, and others want their patients off of it before it has had a chance to work!
Posted 11/11/2008 9:44 PM (GMT 0)
I was on Prednisone for two years, and while it helped with the UC I had insomnia while on it, achey joints and muscles, and long term I ended up with osteopenia, anemia, arthritis ... I managed to keep the weight gain under 20 lbs and have lost much of rather quickly. Be sure to take calcium and vitamin D -- get your blood check regularly, make sure your iron stores stay sufficient.

It seems most people who have the surgery have no regrets. I had myself all mentally ready for the surgery but my last colonoscopy a few weeks ago showed my colon just about healed (thank you Remicade!). I still may have the surgery at some point because I don't like the meds, but I it would be tough taking two months off right now to recover.

Meesh
Posted 11/11/2008 10:03 PM (GMT 0)

Hi

My GPs are very anti Prednisolone (UK name). I was on it from August 2005 until February 2008 more or less constantly, with the highest starting dose 50mg. Every time I dropped below 20mg the flare returned, so like you I put the dose up again and have notes on my medical record to the effect that I self diagnose and self treat (and am therefore dangerous?!). Self diagnosis of flare is hardly difficult, and I resented having to get permission to treat the nastier aspects of the disease thus delaying the effect of the steroid. I also took a 5-ASA drug throughout this period and still do (mesalazine 750mg daily). In July 2007 I began Azathioprene. Steroid dose decreased but as ever, when it dropped to 15mg the flare came back. I was "ordered" off them in February, and I have to say that since June things have settled down to acceptable. I have replaced milk with lactose free milk and take inner leaf gel aloe vera, so I guess these may be contributing but I was/am completely sceptical.

But back to steroids. The legacy of that period of use is extreme pain in my feet and ankles due to the damage they've caused. Please beware - don't use them lightly and look for alternative drugs or natural substances.

Good luck!

Posted 11/12/2008 12:48 AM (GMT 0)
     I think we sufferers with UC know our bodies better than most people.  My GI doctor knows that when I see symptoms of a flare (had UC for over ten years now), I start back on the prednisone immediately.  However, I do call him and he offers suggestions.  This last flare, which started in April (I wound up being hospitalized for ten days in May), my GI doctor started me at 30 mgm of prednisone.  That didn't do the trick.  I was tapered off, but after two weeks, the flare started up again.  This happened twice.  The end of September the doctor told me to take 40 mgm of prednisone for a week, taper to 30 mgm the following week, then to 20 mgm and after a week on the 20 to taper 5 mgm per week until weaned.  I think that finally did the trick but I don't want to jinx myself because it has only been ten days since I am off the prednisone, but all symptoms have subsided and I feel more like my old (with the emphasis on the OLD) self again.  Hope this means this Old Christine will feel like new again..lol.
Posted 11/15/2008 5:27 PM (GMT 0)
I'd defintely see if maybe you can up the dosage of immuran. When I was flaring, I was on prednisone but I didn't notice an improvement until my GI increased my immuran from 100mg to 150mg. After that I improved dramatically. Hopefully your test for immuran will be shorter than 3 weeks. Talk to your GI and see if there is anything they can do to speed that up. Good luck : )
Posted 11/15/2008 5:40 PM (GMT 0)

I think you are wise to start thinking about other medical options.  At 4 months of prednisone use one is considered prednisone dependent.  It's at this point that you and your GI should be looking at immunosuppressants.  I was a pred-user for 2.5 years.  Although I have not seen any long term side effects (it's been 8 years since my last dose), I do wish I hadn't stayed on the drug so long.  Of course all of this is easy to say in hindsight. 

You need to weigh the pros and cons of continuing with pred to get you stable for your new job. 

Sue

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