I am now in my 5th year of Prednisone. Flaring every time I get below 7 mg. In despair I tried the over- the- counter food supplement CBD oil. I wasn't sure if it helped or not so ordered another 10cc bottle from the UK - but the customs people confiscated it - so I won't try that again! I then went to a pain specialist to apply for a licence for medical M. and was told that I would have to be on analgesics unsuccessfully for a year and then apply again.. but life's too short to throw away another year and fill my body with more stuff. Then a friend referred me to a very senior rheumatologist who had helped her. In addition to doing a million tests to eliminate anything else, she diagnosed sicca syndrome which she thinks actually been caused by the steriods. It seems now that I cannot live without the steroids but I also cannot live with them. The rheumatologist assured me that I would be off Prednisone within 2 years by following an 'old' protocol. She also said she was confident that the adrenal glands would function again using this very slow protocol. The protocol she suggested is the "dead slow and nearly stop" protocol with the addition of a full month between each reduction. So, it would take 6 full weeks to taper from the old dose to the new dose by 1 mg. and then another 6 weeks at the new dose before beginning the next 1 mg reduction. This basically means that each 1 mg reduction will take 12 weeks. Will it work? Who knows... maybe it's worth a try!
Your reduction plan might work well. 5 years on prednisone myself with many ups and downs..........I am reducing by 1/2 mg a month which has been helping. I am on 8 mg.
Always worth a try!
However - however slowly you reduce, if the PMR is still active you won't get off pred.
And what makes her think it is sicca due to pred? It could be sicca due to PMR (it does happen). Or you may also have Sjogren's as well as PMR. All autoimmune, with or without antibodies.
On another forum someone has just reported that their new endocrinologist has done some research and 50% of PMR patients develop secondary adrenal insufficiency/don;t get off pred. I hope to get a reference next time she sees him.
Ooops - Good Luck!!!
Hi Ricky
I have been on prednisolone for 2 years, I had the same problem as you I would get down to 4 mg and have a flare up. My rheumatologist said the pred was not working. I am on methotrexate 3 weeks now and this is making a difference. Still on pred but in no pain and reducing 1 mg per month . Hope this helps
That sounds depressing- 50% of PmR patients develop permanent renal insufficiency?? Is that what I just read? EILEEN HAS THAT BEEN YOUR OBSERVATION OVER THE YEARS?
Not sure what I can add but am sure the slow, slow and extra slow way is the only way for those of us that have been on pred for some time. I wonder if you are the same- I am beginning to find it very difficult to differentiate pains! I developed acute sciatica as a result of being on crutches having broken my ankle. The pain was the worst I have ever experience( including 3 childbirths) . Problem is I was still reducing and managed to get to 4mg - probably aided by the fact that the sciatic pain obscured the PMG PAIN! I am now aching everywhere and cant differentiate the cause. ! I think may be that some of us have to accept that we may not get down/ off completely. Maybe we need to be a bit more accepting and give ourselves a bit of slack!
ADRENAL insufficiency! That's what a study done at St James hospital in Leeds has found. An old study said 5% which I can believe even if a lot of doctors think that is too high. It is difficult to know why a lot of people get stuck for years at a low dose - is it really PMR or is it adrenal insufficiency that is causing the problems? How many people are there dragging themselves around not functioning well because they haven't been tested? The 50% isn't just total lack of function, it includes poor function too.
I tried half a milligram a month too - but - as soon as I got to below 7 the flares began again..... time will tell! thanks and good luck to you too :-)
thanks!
Hi John, I wasn't offered methrotrexate. I hope it works well for you- some people have side effects from it but for others it seems to work.No pain seems to be so elusive these days!
I give myself all the slack I need. I refuse to compromise and so I take the amount of pred I need, Luckily I have a GP who agrees with me. The rheumatologist isn't quite as on board - but at present I need 15mg or the atrial fibrillation which is obviously associated with the vasculitis starts up again. The cardiologist can't do any more - so pred it is, at her instigation really. I'm not ecstatic at 15mg - but it is far preferable to the alternative. At least I can function well.
Eileen, does that mean that the symptoms of adrenal insuffficiency and pmr are the same? Last year my endocrinologist said that when I got to 5mg daily I should do an adrenal function test - but of course never having got to 5mg meant that I didn't have the test done - So maybe that's what my new rheumy is focusing on in her dead slow and stop plus protocol? Time will tell.....
Sound advice!
Some of them can be - the fatigue, aches and pains and so on.
Yes, the very very slow approach MAY work for the adrenal function. It won't work for PMR that hasn't yet gone into remission
Why not try DSNS method dropping by a half, not 1mg. Then stay on new dose for more than a month. Nothing to lose. Be a tortoise. I only drop half and stay there 2 months to avoid flares.
you might well be right...i didnt think of it. .what dose have you reached now.?
Just down to 5mg after 3.25 years. Dr lets me do drop at my own pace as we are all so different.
Do you think you might have RA? After over 2.5 years with presumed PMR, I've just been told I'm more likely to have RA. I'm on 9mg pred and haven't been able to reduce any further, but I've been on methotrexate for four weeks and the pain is at last very slightly better, although I'm not pain free. That would be amazing! Have you experienced any side effects from the methotrexate?
I'm a little concerned about what I'm reading here.
I hope I 'm misunderstanding what I see.
It looks to me that I'm learning that people using pred over a period of time are possibly surpressing their adrenal glands to the point that they may not come back...ever!
Please tell me I'm wrong.