6,805 members10,615 posts

on pred since oct 2016,still unconfirmed diagnosis

although been on pred,(started 40mg)since oct 2016, still unconfirmed by rheumy, left me at 20mg from nov 1 till jan 18, down to 17.5 , saw her feb 14,was going to reduce me to 15, but told her had trip t(o cuba booked for apr 17 for wk, told me to stay at 17.5 till ret,d on 24th, then reduce to 15 but now my gentleman friend has booked us a 3 day trip to nashville on apr 5,he wanted to see a concert there,, so i am reluctant to drop to 15 , as trip only 10 days away, afraid of affects of dropping as i have read on this forum, but at same time, frustrated, worried about long term usage, for each dose, especially since rheumy won,t confirm pmr, and experiencing some side affects in last 2 mos, hair thinning, and moon face, weight gain, i am really getting stressed about this whole steroid usage, especially when not knowing what is going on with my body, and as you see last post, i developed groin and hip issues about a month ago, would appreciate any advice anyone has, not scheduled to see rheumy again until may 2,

3 Replies

Not really sure what to say, Arvine. I think I have said the same things previously - that you appear to be being medically cared for very well and I answered your post yesterday regarding OA/soft tissue problems.

If you don't want to drop the dose before your trip then don't, but you can't have your cake and eat it unfortunately. If you are going to remain at your present dose then don't worry so much about long term effects because you are really just a beginner and those side effects you have should reduce as the dose decreases. Once you can match me at 16 years you can maybe worry about it - but I don't!

Your frustration at the lack of a confirmed diagnosis appears to be clouding the whole issue and there is nothing anyone can do - including yourself - to solve it right now. If you have only a month to go for your next Rheumy appointment just let it lie till then and enjoy your holiday.


We have told you before - there is no such thing as a confirmed PMR diagnosis. It is a clinical diagnosis made on the basis of how you present to the doctor, ruling out other possible options and often a trial of pred. That doesn't, however, confirm anything other than you have some symptoms that respond to pred and there is nothing else that can be identified that is causing the problem. Many people with autoimmune disease never get a "confirmed" diagnosis - you certainly aren't alone in that. Many of them never get any drug identified that manages their symptoms either - so if pred is doing that for you I think you need to be grateful for small mercies.

Only you can decide whether to drop your dose or not - and you have to learn how to arrange your life and desires around that in the same way the rest of us have had to do. We can't do that for you. You have a doctor's appointment quite soon and I imagine she will expect you to have done - or at least tried - what she suggested. We give enough advice about how to reduce pred doses with minimum pay-back - we can't do it for you.


Hi Arvine, you seem very active with PMR, your problems seem to be more with the steroids.


You may also like...