4 years in!

First off, I hope you see this. This forum is very quiet and you will get a lot more support if you go to HealthUnlocked the PMRGCAuk community. I am sorry I am not allowed to post direct link.

It is obvious your PMR is still active and your medical guidance so far has been very lacking. You were fortunate that 10 mg at the start was so effective, and had you been allowed to taper very, very slowly you would most likely be at some sort of very low maintenance dose rather than going through a lengthy period of yo-yoing your dose and now being told you have to switch to a less effective steroid treatment to encourage your adrenal glands to pick up their pace. If you have pain as well as the extreme fatigue I would say it is very likely that PMR is still with you and a moderate dose of prednisone would still be the best treatment, as it was in the beginning. Your adrenal glands will be naturally suppressed because of the steroid treatment and people are often prescribed hydrocortisone when their PMR is properly in remission but they need a cortisone supplement because their adrenal glands are no longer able to produce cortisol.

Did you have a synacthen test? This is the test which is usually administered when your at about 3 mg pred to see if the adrenal glands are able to produce cortisol again. If this was done and your PMR is proven to be in remission (only you know that, from your pain levels, your doctor won't know) and if the adrenals are not waking up, then hydrocortisone is the steroid of choice. Correct treatment, whether it is continuing pred because you need it for your PMR, or trying hydrocortisone because it more closely mimics our natural cortisol, should have you feeling much better, not worse. A much bigger dose of hydrocortisone is required to achieve dose equivalence of prednisone as it is not as strong a drug and that may be why you are suffering, if PMR symptoms are beginning to re-emerge, and also if your current dose is not supplying the level of cortisol your body needs.

Doctors often deny that pain in the hands (and feet) is connected with PMR but many patients would differ. However, do you have any of the other pains you experienced with PMR back in the beginning?

One other point, up to 20% of patients do not have what doctors consider significantly raised inflammation markers, so in that sense you are not atypical.

Please do try to find us over on HealthUnlocked and post your question again.

PS I've had PMR for over six years and most of that time I've been at a dose of around 2 mg, having started at 15.

Hi Cynthia, I am a radiologist with PMR for a similar length of time just randomly checking back into the forum. It's been a while since my last visit which is a reflection on my good fortune in how my disease has responded so I'm sorry to hear of the difficulties you are having.

I had a very abrupt onset of pretty classical symptoms over about 3 days so that by the end I could barely roll over in bed and it was very difficult to get out in the morning. My ESR and CRP were not that raised but everything else was excluded including Lyme disease and Leptospirosis from swimming in a mountain lake so I was ready to start steroids as soon as my rheumatologist was convinced. I began with 15mg but eventually needed 20mg split 15mg in the morning and 5 mg in the evening to get proper relief from the incapacitating pain and stiffness. To cut a long story short 4 years later I have reduced to 2mg and am essentially symptom free and back to swimming regularly. I get the odd tell tale pain in my left wrist extensor complex to remind me of what it was like and an ache in my right shoulder where I had an arthroscopic repair which I think is what triggered my disease.

I admire how you have managed to keep working through it. 10 mg is a little low as a starting dose and it could be that you are under dosed. I would get the symptoms back quickly if I reduced a little too quickly or occasionally forgot to take the pred. I pretty much managed my own reducing regime with the blessing of my rheumatologist based on how I was feeling and to be honest I now have trouble recalling exactly what I did although the first step was stopping the evening 5mg.

It is handy that you are going to be reviewed by the rheumatologist as I think it would be important to review the diagnosis in case you actually have an inflammatory arthritis particularly if you are getting symptoms in your hands and feet. In my case the issue was very much classical severe pain and stiffness around the shoulder girdle and in the left wrist extensor complex which I discovered later is a feature recognised on MR imaging. Small joint symptoms for me would be atypical and I would want to screen for other inflammatory and reactive arthropathies.

Best wishes in getting some help with your condition.

Cortef is hydrocortisone - it is a far less powerful antiinflammatory and the short half life means it is rarely ideal to manage PMR. You need 3x daily dosing to do it successfully and - like any corticosteroid - a high enough dose to manage the current amount of inflammation. Normal range markers are found in up to 20% of patients with PMR - but that doesn't mean they aren't raised for you, mine bumped along at 16-18 which is in range but my personal normal ESR is in low single figures. My CRP only ever rose in response to atrial fibrillation problems.

I had pain in feet and hands originally with PMR - and if you develop RS3PE syndrome with PMR it will cause it, It also responds to moderate dose pred - but I've come across a few people who have found hand and foot pain develop as they reduce their pred and I wonder if there is a link.

But you will get lots more response at HealthUnlocked - they tell us there are new responses to a post so a conversation can develop whereas here now each person replies in isolation because no-one else is told about it. Useless ...