Kitty here from Gig Harbor, WA. Thank you all for the great dialogue. I've learned so much following everyone's questions and replies.
After several weeks of tests and ruling out other disorders (such as GCA, cancer, rheumatoid arthritis, Lupus and others), my final diagnosis is PMR.
I've been on 20 mg prednisone for seven weeks. The pain is better. However, I've noticed my range of motion is more limited and the fatigue just won't go away. It feels a lot like "mononucleosis" which I had a very serious case of at age 16.
I have not worked since May and I'm starting to wonder if work as I knew it will ever be the same. Short walks and intermittent household chores are about the extent of my activity.
Should I be requesting physical therapy for help starting to move again? Have any of you done PMR physical therapy and did it help?
Fatigue is very common with PMR, quite debilitating sometimes. You have been on 20mg of pred for quite a long time, has it been suggested you should start to taper? Are you taking vitamin D and calcium supplements? A side effect of pred can be bone density loss so vit D and calcium are recommended. Have you had a bone scan? I visit an osteopath, but if you visit anyone like that including physical therapy ensure they know about PMR, as it can be exacerbated if the therapist is not familiar with the idiosyncracies of PMR. PMR is very intolerant and likes to rule you! It is a life changing illness.
Thanks for your reply. Yes, I'm on a liquid calcium/D/magnesium supplement and have had a baseline bone density scan. My GP is managing my condition until I can see a Rheumy in November. She has consulted with the Rheumy, pain management specialist and others via phone. I see her again in early September at which time she will retake blood tests and decide whether to begin tapering. My WBC count, sed rate and CRP have remained elevated to date-some of which they think is caused by the prednisone. Hopefully, we'll see improvement in September. Fingers crossed!!!
At this stage I think you should be starting to look at reducing the dose - it doesn't achieve much keeping you at the higher doses once the existing inflammation has been dealt with. You now need to look for the lowest dose that will manage your symptoms to a similar level. You don't necessarily become pain-free even on higher doses of pred. The substances that cause the inflammation are shed every morning at about 4.30am so what you need is enough pred every morning to clear out that day's inflammation.
It was written to help GPs manage PMR without recourse to a specialist. The white count will be raised due to the pred - the ESR and CRP should be falling but they can also be raised by other conditions so they should always only be seen as a guideline. The symptoms are always king.
My sed rate is now normal and my CRP is reduced after 7 weeks on 20 mg prednisone (for PMR). My GP reduced my prednisone from 20 to 15 mg. We will now start a slow taper.
The fatigue remains and I'm noticing dull pain in my hips and buttocks. I think my husband is getting sick and tired of me being sick and tired. I try not to complain about how I feel so not to burden him. Though I've tried to educate him, I think he still believes it's "all in my head" because some days I look well. He has a "power through it" mentality and when he asks me how I feel in the am, he says better?, good!!!! Before I even answer him. Makes me feel discounted and not emotionally supported. I think he developed this mentality watching my mom suffer from the same condition for many years. I even began to wonder how much of this was "in her head." Now I realize how much she truly suffered. At least I was there for her and did everything I could to keep her safe and comfortable in their final years.
I agree that it would be important for your GP to understand that you should be starting reductions at this point -- 20mg is a bit higher than the usual starting point for steroids for PMR. Perhaps she has kept you at that level because she isn;t really familiar with the condition and you are not feeling back to what was normal -- unfortunately an awful lot of GPs and even rheumatologists have this idea that the steroids are supposed to make all the symptoms go away. But -- as all of us pretty much know -- steroids reduce the symptoms but really do not make them disappear, especially the fatigue and morning stiffness etc. Thus understanding the tricky part of reductions -- knowing what is pain due to (normal) adjustment to a reduction and what is an actual fare meaning you need to go back up on steroids -- and reducing s-l-o-w-l-y to reach your eventual goal of coming off steroids, to avoid flares -- will be important for you too! That's where boards like this come in, because you will get such helpful advice from others going through this or who have been there.
I had pretty much the textbook experience, though I got PMR at a 'young' age of about 52. It took me just about 2 years to come off steroids and I've gradually come back to close to what was normal in the succeeding three years. Only in my first two weeks at the highest steroid level (15mg) was I really pain free. The next two years were a struggle and required really understanding my limits and helping my body recover. I learned even my expert rheumy often understood less what I was experiencing and what I 'should' be able to do than people here and in other online PMR/GCA communities.
Let us know how you get on and I'd really try to see a theumy earlier than Nov if you can. If not then do talk thru the document on PMR and reductions others have recommended. That came out midway thru my having PMR and became my PMR bible, which I read and reread.
Thank you! I will talk with my GP about starting the taper. I'm also trying to get in to the Rheumy sooner. Thanks so much for sharing with me. It's so helpful to know that others are experiencing similar symptoms. Kitty
Well, we'll try the recommended taper and see how it goes. My symptoms were acute in early June and much better in 3-4 days after starting Prednisone. I believe my mother had the same condition. But hers was diagnosed as Chroinc Fatique Syndrome and Fibromyalgia 30 years ago. She passed last year at 79 after several mini strokes and pneumonia.
Not if I'm anything to go by! PMR symptoms first became noticeable when I was 51 (nearly 52) and I had 5 years with no pred because my bloods were normal so there couldn't be anything wrong said the GP! Then the PMR went mad and after about 6 months I was allowed to try pred for 6 weeks - miracle! But the rheumy was adamant it couldn't be PMR despite being textbook other than age. A different GP disagreed and provided the necessary prescriptions. Oh how I wish I'd seen her earlier! But being part time and 2 or 3 lots of maternity leave had made that nigh on impossible.
It's now 11 years on from the start - and a few months ago it was still there when I tried 3mg. Went back to 5mg because I was so much more comfortable there to cover a 3 week trip to China with a LOT of walking and am now back down to 4mg. So far so good.
Most of the younger patients I have come across seem to struggle a bit - or is it because we are often still working which inevitably is a problem when it comes to reducing.
I'm still working and have just turned 70 with a pretty active job. I also spend my spare time photographing wildlife - just over a year ago I was in tiger reserves in India with the first broken femur thanks to the AA. Now with the second fractured femur this is out of the question apart from the fact that I have cataracts in both eyes thanks to the pred so the cameras are out of the question until they are fixed. You must have had a complete nightmare with no pred for 5 years, hats off to you for surviving that!
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That's where boards like this come in, because you will get such helpful advice from others going through this or who have been there. 
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