Honest opinions about Prednisone

If you slip into a flare you pretty much need pred to get out unless you can eat only salmon for 7 days which I cannot do anymore but extremely anti-inflammatory. If you have to you have to but make changes for the next time.

I would seriously look at alternatives, I have experimented quite a bit and lost control and wound up on pred and certainly was not about to taper while interviewing over xmas so I kept the dose high and was on the longest ever probably 4 months. That was enough of that, via 8 weeks of blood work etc I found a protocol that works for me and will tighten it up at the slightest indication of trouble because prednisone is terrible it not only is catabolic on muscle it reduces bone density and so on....

For taper off two key things are Qing Dai was shown in study to help people who cannot get off Prednisone. Raw Adrenal pills for 11 bucks also helps.

Technically, prednisone doesn't heal but it does help stop the immune attack which is causing your UC, allowing your body to heal itself. This is why prednisone is great while you take it but after you quit or taper down low your body resumes the immune attack, destroying your colon again. Hopefully maintenance meds can help keep you in remission once the pred is tapered down or off.

My body did not resume the immune attack immediately, I stayed in remission for years at a time after Pred, as do many people. For many of the past 30 years I was not on any mesalazine either so clearly the immune response was not immediate or inevitable. To say I went into spontaneous remission while taking Pred but it was nothing to do with Pred is pure fantasy, when I had IV Pred in 1988 I was very sick indeed and no way was I going into spontaneous remission.

It is just picking holes in language to say Pred did not heal me but of course, yes, if we are going to be exact, it stopped the immune response which allowed the colon to heal.

I am sorry that things went badly for you NCOT. My disease course has been completely different from yours. Since C Diff last year things are a bit complicated for me. I know now that my overall poor health since summer 2012 is almost certainly due to the pro-inflammatory effects of my supplement regime that was very harmful for me - I have documented all of that on the MTHFR and vitamin K2 threads.

Post Edited (London Lurker) : 4/19/2014 6:22:08 PM (GMT-6)

We are all different NCOT, I am thankful that I have had far fewer flares than many and far fewer episodes of Pred. Only hospitalised once for colitis. That first pan colitis flare in '88 only got that bad because two useless GPs, sexist old men who didn't take a young girl seriously or create conditions in which I could explain about my embarrassing (for an early 20s girl) explosive BMs, bleeding, 1984 Pred enema use nor bother to read my notes that I had had proctitis 4 years previously, did not prescribe me anything or do anything but leave me on a long, long waitlist for gastro outpatients.

My second hospital stay in late 2008 was due to a mystery virus or bacterial infection, not colitis, possibly I was one of the first with swine flu, they thought it might be viral meningitis. I was in mild flare on going in and the IV antibiotics, NSAIDs and Warfarin they pumped me with are what probably made my flare bad for a few days...and I know all about CRP, my body leaps in it every time I have an infection, it was 140 last August when I had what I think was Bornholm virus and it raises usually up to about 25 when in UC flare

During the 2008 hospital stay I was woken by 1am by some excited young doctors taking my blood gases and telling me my CRP was 295 and I was lucky the duty surgeon that night was a gastro as they were intending to remove my colon which must be in toxic megacolon state given that level of CRP. That was pretty frightening, I knew that I was actually already moving down to a mild flare as I'd been given IV steroids and was not in much pain and had had far less blood and OK BM compared to 24 hours earlier. The massive CRP was doubtless due to my body fighting the flu hard and having to fight even harder due to being on steroids. I will never forget being wheeled around that empty (at night time) hospital to X-ray (having previously refused x-rays of the bowel as my team in my usual hospital told me to avoid them) and the relief of X-ray saying that my bowel looked nothing like a toxic megacolon.

Thus I can characterise myself as a good Pred responder who has not gone quickly into re-flares on taper in the past like others who have posted on here.

I know that one day I may not respond to Pred, but I did in 1988 when the surgeons were circling my bed, thus I have had my colon for 26 years longer than I might have due to Pred (and the mesalazine which I was given in '88 and now know from that German study in 2005 does suppress, although not eradicate, the damaging bacteria that apparently release from biofilms in UC people) and for this reason I find it totally irresponsible to warn someone off trying it although they need to know all of the caveats and potential dangers and disappointment of using it.

I am fully aware and prepared that one day I may run through the options, Pred, aza, biolgics and end up with surgery. I am not complacent.

Sorry NCOT but I don't understand how you can say that you are a good Pred responder whose colon didn't heal because my colon, along with lots of others' did "heal" or go into remission or whatever we are going to call it for a good long time after a course of Pred, that's what I mean by a good Pred responder. What you describe sounds like a short term Pred response that cannot be sustained and that you had many, many courses. A friend of mine is kept alive by low dose Pred because of her Addison's, it may be toxic for her but it is less toxic than death which would be the outcome if she did not take it.

We are that bit too old to properly profit from pharmacogenomics and nutrigenomics where it is becoming really understood how and why some of us respond to a med - and too old that we are in a time where healthcare pays for a personalised testing and medication regime - 'cos a lot of this is out there already but not approved by NICE etc. Happily the generations that come after us should profit from our loss with more freedom from these nasty diseases at least and that cheers me that future generations will learn from our trials.

if your going to try a steroid , try Uceris instead of prednisone . you can research vs i've had much better luck with it and less  side effects and I know prednisone ( believe me)  been on it for years ....

oddly the gi's aren't using this first over pred . even though its research shows it probally should be IF a steroid IS needed ....

Post Edited (SS0000) : 4/21/2014 11:28:12 AM (GMT-6)

Entocort is Budoneside and you can definitely get Entocort in the UK: I've been on it.

The surgery stat for UC has always been in the 20-30% region, so like I said: the surgery rates are not going down. And yes, there are lots of people with very long remissions who got there by doing nothing special at all. That's IBD for you: completely random.

Hey Strike, prednisone is not a long term solution. It makes me completely insane. I get the mood swings, psychosis, I alientate myself from people, it gives me terrible acne and insomnia. Oh, it completely stops my UC at 40mg. It's very difficult to taper down.

People are right about the maintenance drug... Use the prednisone to help the Lialda work again. OR, you could try modifying your diet. I was on SCD to help taper off prednisone. However, after 2 years on SCD, it does not seem to work. I am currently trying David Kleinz healing vegan diet (www.colitis-crohns.com)

I believe diet is a long term solution to UC. Although it may never be cured through diet/lifestyle/drugs, I believe these are much better alternatives than drugs/surgery.

I wish you a wonderfully long and pleasant remission soon :)

Prednisone is an amazing medication! I do however remain very selective as to when I will "beg for mercy and a script." When I do take it, it heals me, every time. I've had UC 14 years now. In the early years it was absolutely horrible, and when the symptoms come now they are just as horrible. Back then I was on a high dose for awhile and started to break out with bubbling on the backs of my arms, tapered and they resolved. Over the last few years I have had to "burst" about once per year and it still works for me. Give it a try, exercise and enjoy the benefits of remission...hope that's how it goes anyway

Definitely seen good remission after surgery for Crohns with my ex work colleague who suffered badly with a stricture and when he went home to Germany they sorted him out and he has had a 4 yr or so great run, although I think he is staring to suffer again now.

I have had spontaneous remission from UC a few times, at all of those times though I could take time out to rest and heal. Recently I did not have that option and my flare was not going down and was getting to the stage of dangerous ulceration, hence I had to go with the meds, and be forced then to take time out of my work in therapy anyway as a therapist on Pred is not exactly a desirable combination!