Reduction in Prednislone dosage

[Warren43]

I have been on Prednosolone for 5 yeas. Giant Cell Arteritis starting on 40 mg daily. In March of this year got down to 3mg daily, 3 weeks ago tried to reduce to 2 1/2 mg onlternate days for 10 days and then daily. Awful joint and muscle pain and headaches. Just had a blood test and await a call from Consultant with results of test. Not keen to back up to higher dose but feel it is not possible to reduce any further than 3mg. I am 72 years old and want to live my life without pain. Any comments would be welcome. Myra.y

A

ain

[PMRpro Ambassador]

It does sound as if now you are on a low dose of pred the spectre of PMR has returned - the high doses used for GCA deal with it very well but it can be a symptom of GCA and it can also appear on its own. Hopefully you have just gone that bit too far and a return to, say, 5mg will be enough. I've been on pred for over 6 years now, am just at 5mg after many struggles in the first 3 years, never being able to get under 9mg. I feel well and am perfectly happy to stick at 5mg if that is what it takes - and so is my rheumatology-trained GP.

I agree with you - while an even lower dose might be very nice I'll accept what I have. Jam today I say - my bone density hasn't deteriorated at all even on the higher doses I was on before so I doubt it will change now. I have no other side effects we can tell. I've lost the pred weight I had gained, never had raised blood sugar, cholesterol is back in normal range without medication. What is there to complain about?

I do hope this is just a blip of the "Steroid withdrawal plus PMR not being managed" and going back to 4 or 5mg is all you need to do. Look forward to hearing the doctor's decision.

[Celtic PMRGCAuk volunteer]

Myra, I can imagine how disappointing and frustrating it is for you to get as low on the steroids as you have, only to have returning symptoms. I had a very similar experience, starting at 40mgs for both PMR and GCA, and all was fairly textbook until I reached 5mg when things started going a little pear-shaped. I continued reducing as per my rheumy's original plan but when I reached 3mg I was literally back to square one with the PMR and unable to walk. I was increased to 10mg to really get on top of the pain and fairly quickly managed to reduce back down to 5mg via alternating doses of 10/7.5 and 7.5/5. My rheumy then kept me on 5mg for some 5-6 months to ensure complete control over the returning inflammation. All this was some years ago, and if I knew what I know now, I would not have continued reducing from 5mg when the pain first returned but would have increased to 7.5mg straight away before the inflammation really got away.

You may be wise to increase back up to at least 5mg to see if that is sufficient to resolve the pain. It is still a low dose and if it means you are without pain and gives you back your quality of life it will be worth it. If the 5mg dose controls the inflammation, once back down at 3mg again you may find that you need to remain on that dose for a little longer second time around - a sort of maintenance dose for a while.

Do let us know the results of your blood tests and the advice from your Consultant.