Prednisone Titration Schedule?: I am aware this... - Behçet's UK

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Prednisone Titration Schedule?


I am aware this is not medical advice. I am just curious what success people have had with different titration schedules once people have arrived around 5 or 6mg of prednisone. (Taking note that one has been on various doses of it for 2 plus years).

14 Replies

Hi Stm252

I would be interested to know the same. I’ve been on steroids for just over a year now to help control severe joint pain. I am currently on a maintenance dose of 5mg which keeps me mobile but not completely pain free. I’m on my 4th week of Cellcept (MMF) and hoping that this soon gives me relief of joint pain so I can get off steroids completely. I have tried reducing further (for my own curiosity) and got to 2.5mg but was suffering more pain and fatigue and my inflammatory markers started rising so I went back up to 5mg as didn’t want to induce a further flare.

Are you on any other medication? What symptoms does your steroids help with?

Stm252 in reply to GlastoGal

Hi there. Sounds like we are in the exact same spot but I have never been as low as 2.5mg. I am on cholchine and Otezla. The steroids help with my joint pain, breathing problems, stomach issues, bone pain, eye conjunctivitis, fatigue (maybe?!), headache (maybe?!).

Hi was wondering same thing just yesterday, it seems when I get to 10mg or below my joint pain is unbearable and tend to have a flare. My last flare was v bad and went up to 30mg am now at 15mg reducing slowly by 2.5mg every two weeks. Now starting to get knee joint pain, the last two nights been unbearable. Was told at last consultation that if flare bad again they may try me on methotrexate

Stm252 in reply to Benne09

I wish I could understand this whole thing. 7 mg is my sweet spot...I just don't understand the rhyme or reason.

GlastoGal in reply to Stm252

They certainly are the devil’s tic tacs! Steroids are the one thing that at a higher dose takes all my pain away and gives me enough energy to function but unfortunately it’s not a long term solution.

I’ve gained over 2stone in weight in only 1year and worry about bone (and teeth) weakening/damage and developing diabetes.

Unfortunately we all seem to have a steroid responsive disease so I guess depending on what’s happening in the body will depend on what dose of steroids is needed to relieve the symptoms which is why the dose is changeable then somewhat maintained.

Question: My doctors in the U.S. were very firm on NOT taking a steroid with colchicine. I can't remember why, but they did say it was for adverse reactions. Has no one else been told this? I see many on here taking steroids and colchicine. Just wondering.

Stm252 in reply to Cristelton

So interested as to why! I am in the US too and I never heard this and I've had a lot of eyes on me

Cristelton in reply to Stm252

I'll ask and see why. I am so thankful to have found an active message board.

Stm252 in reply to Cristelton

Look forward to hearing. Thank you in advance!

Cristelton in reply to Stm252

Turns out that the program I was in just did not want to pay for both.... Lame. Sorry that it took me so long to respond.

Stm252 in reply to Cristelton

No problem, Of course they didnt want to pay!!

I have been on varying doses of pred for the last 8/9 years.( and times before then) the highest dose being 30mg whilst flaring badly, meds not working and almost 3 months to see my prof. not good. Ive managed to get down to 5 mg daily, but have had to do it on such a slow reduction and even then, every time i reduce at all I flare.I am now on a cocktail of meds ranging from Ant TNF, Methotrexate,cardiac, bp meds and beyond!

My problem now is that the Prof wants me off the pred totally, even by reducing 1 mg a month or less and staying on that for 2-3 months before dropping again.

That sounded ok, until I had my cortisol levels checked ( Profs request), and they are lower than they should be, meaning my Adreneal glands are not working properly.. This is supported by other symptoms such as muscle loss, weight loss ( unintentional, though nice to be able to get back into clothes not worn for a number of years! 2 stone lost +), and other issues , no one medical seems to want to deal with this, and it could be life threatening.

hey ho, what new!! (Addisons Disease, can lead to adreanal crisis, especially if subject to stress). Ive had to argue the case for much of my treatment with medical professionals , even down to having the right mouth treatment for mouth ulcers, and to be seen by a GP/opthamologist when my eye had flared! ( getting past the receptionist, its like they make the decsions on your health, must be well qualified!!)

My advice, get medical advice on reducing steroids further. do not drop the dosage rapidly, what you think is slow, might not be. keep a chart of dose taken note any possible reaction, dont worry about taking it back a step-, and ask to have cortisol levels checked if you have been on steroids for any period of time.

Yes!! So I saw endocrinology because of how long i have been on the pred. The rhem punted me to her. But she said she wont manage my taper. And the rheum said he wont either! She said she cant test my cortisol until I am actually consistently below 5 mg and hardly using the pred. So I am changing rheums so I can get help with this and figure out a taper strategy. Bc the endo did discuss a crisis, and all those kinds of things! Its bizarre to me that when you need help, it's so difficult to get it. Right now I am on 5mg and staying here until I know what to do. I have not been this low in 2 years.

Not heard about any interactions with colchine and pred btw. I was restarted on Colchcine last summer and had previously taken it with steroids prior to coming off it 8 years ago ( raised liver function due to Mycopholate, came off Colchcine to drop lfts into normal range so I could commence other therapy. bit scary being maintained on Pred only for six months). I think the thinking may be is that they do a similar job, and that they try to reserve Steroids for when there is a Crisis situation. They can also evaluate whether a drug is working, rather than the effects being masked by the effects of the steroids.

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