On September 13th, 2017 my first doctor said I had PMR and prescribed 20mg prednisone after 30 days because of fatty deposits around my collarbone he told me to take zyrtec. What! My second doctor was a rheumatologist who did nothing remarkable and then retired. Me third doctor and primary care physician just wants me off prednisone and prescribed gabapentin. My fourth doctor, a rheumatologist whom I’ve waited since January to see said he didn’t think I had PMR anymore, to take Tylenol and see a spine doctor. I’m now waiting for an appointment to see a physiatrist. I was down to 4mg prednisone but my buttocks, thighs and shoulders have hurt so bad that I’ve gone bracket to 6mg and the gabapentin and the Tylenol and I still hurt. I’m hoping the physiatrist can help me.
My long awaited rheumatologist appointment. - PMRGCAuk
My long awaited rheumatologist appointment.
What if all this pain is from PMR? And your dose is simply not high enough. I have looked at your previous posts and note that a year ago you were on a similar dose and suffering a lot of pain.
What dose were you on when you were last as comfortable as you were at the beginning* of your PMR journey?
I would be tempted to try that dose and see how you feel (if you have enough supplies)
I hate it when someone is referred to psychiatrist because doctors don’t know what to do.
Thinking of you....
Physiatrist - medically qualified musculoskeletal specialist. Came up the other day too.
No. It’s a physiatrist not a psychiatrist. I had never heard of it either. they work with musculoskeletal issues.
Hope your doing ok
Thank you. I go for an MRI tomorrow. I really hope I can get some answers.
Thank you for your reply. When I first started on 20mg prednisone that first month, I felt fantastic, energetic, just great. I haven’t felt that good since. I really don’t want to go back up to 20.
At what dose did you start feeling pain again?
It’s been so long now that I had to really think about it. I think I was pretty well pain free at 8mg once. The rheumatologist had me go to 15mg for a week after my appointment April 9th but I wasn’t pain free then. I had been at 6mg before that appointment. I don’t know what to do anymore. I am hoping the physiatrist will be able to help me.
I know what I would do. I would try 10mg for a few days and see if it helps. If it does, you know your answer. You have been on too low a dose.
Praps then drop to 8mg after a few days, and then restart the slow taper again, but never go lower if you feel worse than you did at 10mg. Good luck with the physiatrist.
Today I did 10 and I’m some better. Yesterday I’m sure it was the PMR. Still a little achey but doable. Yesterday was awful. These doctors are not the ones living with this!
And REST!!!!
If you have PMR, a physiatrist is probably not the answer. Before my diagnosis of PMR, I went to one for my neck and shoulder pain. She diagnosed me with “forward head posture” and a shoulder problem that I did not have, and sent me for physical therapy that did not work. Prednisone resolved my neck and shoulder pain (to some extent) and I am now able to exercise my upper body.
Why do they think it is not PMR? If it were me I would go up to about 15mg for a while to see if it works again.
Agree, you need a physiotherapist or physiatrist (a new term for me - must be an American thing?) who's clued up on PMR. Before being diagnosed I spent a fortune on physio that just made me far worse - I saw two different ones, on private and one NHS and neither twigged that the pain and stiffness in shoulders and neck could be PMR. One even said 'there's a knot of really tight muscles' at the base of my neck/upper back between shoulder blades. That said, the acupuncture that the private one tried did help a bit.
Zyrtec, the antihistamine?? I wont even ask!!! Those fatty deposits are side effects of pred i got them very quickly within weeks of starting pred. Weirdly my Rheumatologist didnt know didnt know what they were!!! I hope you get sorted with your pain, its like being in no man's land sometimes trying to get answers. Good luck with the physiatrist if you go down that route. Let us know how you go.
I hope so too Lanakay. You seem to be in a nest of confusion with your medics.
About the fatty deposits? I have one just on the left side, actually looks more fluid filled and it was there years before I became ill or taking pred, any doctor who has noticed it has said it will probably go as I reduce the steroids!! Be interesting if it does !
It will go once off pred but it can take up to a year after stopping according to Prof D.
Mine pretty much disappeared once I lost weight - still on above 10mg pred.
I suppose additional weight doesn’t help. I seem to have lost the lump at the back of my neck.
I certainly should loose some weight. I guess I eat when I feel like dog doo. I know that’s an excuse but it’s true.
Look into making small changes and switching to low-carb eating, it really works for many of us to prevent the weight gains from steroids. I put on a lot of weight years ago when I first started on Pred and now lose very slowly, a couple of pounds a month max, but have lost over two stone of the weight I gained and the moon face.
I remember when I complained about putting on weight due to steroids my GP insulted me by saying 'Pred increases the appetite so you eat more but doesn't cause weight gain'. I said that was nonsense, I was eating a calorie controlled diet (in those days I didn't know that was the wrong thing to do and not all calories are created equal) and that I would have had to have been eating around the clock to put on a stone and a half in less than a month! Don't get me started on the widespread ignorance of Doctors who we rely on to treat us!
Would it be safe to say...Ask for a blood test for your CRP and go from there? If elevated the rheumatologist might put you back on Prednisone.
The rheumatologist did blood work and said everything was normal but I understand that can happen if you’re taking prednisone.
Yes, prednisone can decrease the CRP and Sed Rate levels. Do you have a # on your CRP?
I have been recently diagnosed with PMR.. was told to drop from 15mg to 5ng as this was the ideal dosage during this covid situation. But I can’t manage on 5mg too much pain in shoulders... elbows.. base of spine and groin.. so on 10mg now which eases pain to a bearable standard ... need to start the planned 15ng for 6 weeks then slowly reduce over a year once this covid situation is more under control
I can't imagine who thinks telling a patient to drop from 15 to 5mg is the ideal dose for Covid-19. No-one KNOWS what is ideal or not and if you were to get Covid-19 you should be told to increase the dose immediately as sick-day dosing for someone at risk of adrenal insufficiency. Dropping the dose doesn't alter the history - and that is the crucial factor, not today's dose.
And don't be misled - you will only be able to reduce the 15mg to zero over a year IF the PMR allows you to. It comes when it wants and it goes when it wants, and as long as it is there you will need some pred. Not 15mg for the whole time (probably) but the average time for management of PMR with pred is just under 6 years. Only 1 in 5 get off pred in a year.
That’s really helpful thank you.
I’m in Nebraska and haven’t been given any special instruction for Covid.
You are being treated horribly. Are you in the UK, the US or elsewhere. I have lower back problems but like you my PMR pain is in my thighs and my butt. You might try some aspirin until you can get some proper help. It helps me a little with my inflammation. But I figure a little bit counts for more than nothing at all
Asprin and pred is a bad idea. Stomach can develop bleeds and that can get dangerous fast! Please, Lanakay, try Tylenol if you want to try an analgesic.
Tylenol is the only thing I take. I learned the hard way a long time ago.
Tylenol does not reduce inflammation. But if it helps your pain then I have to wonder if your pain is from PMR. Most people report no pain reduction from any kind of analgesic from Tylenolnall the way to opiates like Percocet. Regardless you need to use what helps you the best. I hope you get in soon.
Not what you're looking for?
You may also like...
I don’t know what to do anymore!
Appointment with Rheumatologist
long awaited rheumy appointment
My PMR Journey
Second visit to Rheumatologist
Related Posts
Rheumatologist 
rheumatologist locum visit for prednisone refill
pain….is it PMR or something else?
confused by rheumatologist 
Should I See A Rheumatologist?Moderation team
