Diagnosed with PMR/GCA last June, I have had 3 flares and each time my dose has been increased, resolved the temple pain and most of body pain. However, my last flare over a month ago, (stress related - I am now off work), the increase for a week settled the inflammation - temple pain and the usual stiffness. However, I am definitely developing further pain, but in different areas, both knees, ankles, elbows, lower back, back of neck and intermittent collar bone discomfort. (Back, knees and neck being almost constant) My fatigue is worse and I am more miserable. These pains do ease with paracetamol, although not completely, which I know is not the usual with PMR, a friend who has fibromyalgia says this is where her pain is located - could I have developed a secondary autoimmune condition or is this further PMR?
Any advice or experience on this would be greatly appreciated. I have just reduced to 13.5 mgs, almost back down to my lowest dose of 13mgs.
Many thanks as always.
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lesley2015
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I am no expert but I know their are several who have both illnesses so yes it is possible. However it could be anything so I would go back to your GP. I know it is hard working and finding time to rest although you are off sick at present .
Are you trying to do too much as if so this will have a effect on your recovery and it is still early days for you .
I was diagnosed in Sept 15 and managed to get down from 15 to 10 however had to go back to 12 and know struggling to reduce .Trying the dead slow and stop method I think patience is the answer to this illness.
I hope you get yourself sorted others will advice you further
Thanks for your reply. I am actually being very good, I sleep and rest loads, I have no idea how I managed to work actually. Although my brain is more relaxed and I am no longer stressed - I am not actually feeling physically any better which is a disappointment.
I was started on 40mg, and the Rheumy said I may have problems getting below 15, which appears to be the case - it just seems strange I am now getting pain elsewhere - I have an appointment with him in a couple of weeks so will ask him.
Thanks for your reply, best wishes to you and your tapering too!
You could have, it is possible to have both - or the diagnosis of PMR may not have been the whole truth. About 1 in 6 patients who are first dx'd with PMR get a revised dx at some later point - very often late onset RA which can appear identical to PMR but although it does respond to pred it isn't as good a response.
Definitely something to flag up to your doctor - if you were diagnosed with PMR/GCA I assume you are already under a rheumatologist?
Yes I am under a rheumatologist, and have an appointment with him in a couple of weeks, unfortunately, although I believe he is excellent in his field, he is really difficult to talk to.
Pretty sure you can have multiple conditions. I have osteoarthritis and my rheum doc says probably fibromyalgia since I have all the tender points. It was the osteo and fibro aches that originally sent me to a rheum doc. Along the way my sore shoulders blossomed into classic PMR pains along with my hips/pelvic area and neck. My doc always reminds me that my diagnosis may change to late onset rheumatoid arthritis, which PMRpro mentioned. Sometimes I feel like my body is just one big "itis and algia" party.
That made me smile SusanElevenm 'itis and algia' - I almost feel I am turning in to a hypochondriac, I constantly seem to ache somewhere! And constantly tired - such a change - I was always so active and full of energy.
Hoping my Rheumy may shed some light in a fortnight when I see him, but he is not easy to speak with .....
I hear you! I'm always exhausted now and nap quite a bit. The joke in my household is me planning to accomplish things and then announcing "I am going to scale back my expectations for the day."
One other thing...when I first started prednisone in late winter all my aches vanished. Not just PMR pains but also the arthritis. Now with barometric pressure ups and downs, humidity and rainstorms (things that have always triggered everything from aches to migraines) all my old familiar aches are back. Now that I have a feel for PMR I can tell the difference.
Another thing about aches and pains - when you first start Pred it has a tendency to mask all pains whatever they are caused by. However, as you reduce doses the 'normal' aches and pains of life come back! As we all find out somewhen along the line. Enjoy😉
Trouble is - it's back with renewed vigour now. In the meanwhile, it's probably deteriorated anyway and you haven't realised because some or all of the pain was masked. Ce le vie!
Yes I rub out of spoons so conserve them. That's what I mean exactly - these pains are different - not my usual PMR/gcA - I seem to know that - but what they are I don't know - and as you say the weather is all over the place.
I was diagnosed with PMR summer of 2014 and GCA fall of 2015. Around Christmas 2015 I started getting PMR-like (but not exactly like) pains which my rheumy diagnosed as fibro because the dose of Pred I was on for the GCA should have covered any PMR symptoms she felt. And I think she's right. The pains are similar but not exactly the same plus pain relievers seem to help whereas with the PMR they never did. I hope you don't have another diagnosis on top of what you have. It seems sometimes that once the autoimmune stone gets rolling it seems to gather more and more moss!
I was diagnosed with Fibro long before PMR. Having it on top of PMR really stinks, it's so hard to tell where the pain is from sometimes. Fibro isn't auto immune but seems to cluster with them. Good luck!
Yes you're quite right about fibro not being autoimmune, I worded that poorly. I was thinking of my diagnoses more, my first autoimmune one was autoimmune inner ear disease (AIED) and I was extremely ill with that, and then others seemed to pile up. I think I had PMR long before it was officially diagnosed as in my history it said "patient feels very very stiff", but because I went on high dose Pred for the AIED it took the symptoms away until I was off it a few years later and they came back.
Don't be sorry for making another post. That is what this forum is all about. It allows those who don't know to learn from those who do.And it could be that you have asked a question that another person wants the answer to but didn't know how to ask. We all learn from one another.
Yes you can have both but as others have said you should really speak to your doctor as the pain could be caused by any number of things. Being more tired and miserable can be a side effect of the steroid. I had it for a little while the first time I had PMR but it hasn't been too bad this time around.
I have doubted my diagnosis of PMR for some time. I reduced pregnosone due to really bad side effects. I did have a high inflamation rate and a history, but after withdrawal I developed the same symptoms like with no inflamation rate. I suspect bursitis, physical therapy believes it is not arthritis. Be careful, when they cannot figure it out they call it PMR and treat it with pregnosone.
I'm afraid I have to disagree - if they don't know they usually call it fibromyalgia, even if the patient has raised inflammation markers which don't happen in fibro. Bursitis is part of PMR so you can't rule out PMR on that basis.
Bursitis is not part of PMR, I have had it in my left shoulder since high school. Your body hasty nursery sacs all over your body. PMR they say is one in the same as giant cell, it just is just where it attacks. My sister started with giant cell and later developed PMR in her wrist joints. According to my doctors fibromyalgia does not have high inflamation markers. Your age and genetic history play a part in the diagnosis of giant cell and PMR. Many athletes have bursitis in the large muscle groups.
I suggest you read a few papers/textbooks about PMR. Bursitis, especially in shoulders and hips, can be a part of PMR and has been shown using MRA imaging. You can have bursitis WITHOUT having PMR - which is what you had.
You don't get bursa in muscle groups - "Bursae are small fluid-filled sacs that reduce friction between moving parts in your body's joints. Hip bursitis is inflammation or irritation of one or more of the bursae (shown in blue) in your hip."
I have read a lot and bursae are throughout your body in various places. PMR and giant cell are one in the same and can involve Dna or family history. Bursitis can be triggered by PMR, but they are separate. Your remarks about reading about PMR are a bit insulting since most doctors are mystified on diagnosis that is why you are tested for rhy. Arthritis, vitamin deficiencies, cancer, anemia, blood disorders to mention a few. They know very little about this disorder, they do have history that states it afflicts after 70 usually and there is a history of it somewhere in families usually of Northern Europe descent. Read and talk to Doctors that know something about it, it is misdiagnosed regularly.
Hiya, No I am confident I have PMR and GCA, however, I was given an additional anti-inflammatory for RA, which seems to have helped although I am still on the reduction journey.
Having had flares I would much prefer the side effects of steroids (which like most people on here, have suffered with and are often extremely unpleasant) to the pain of PMR GCA and the risk to my sight.
I've had PMR for 8yrs & GCA for 4yrs then was told about 18mths ago I also have Fibromyalgia. Dr.Sarah Mackie told us that this can happen after long term inflammation.
The first few weeks were definitely spent 'under a blanket' feeling very weak with a lot of pain & brain fog. I ended up having Acupuncture on the NHS which has really helped me get moving again, Exercise is so important even though you may not feel like it, you need to keep the muscles & joints moving, it also lifts the spirit! I've been on 5mg Pred for over a year now, I also take a herbal treatment - Lions Mane - a mushroom in tablet form. Yes there is life afterwards. Good luck.
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