Do I really have PMR, should I be here? Rheumatologist suggested dx due to symptoms, but there are other possibilities. A newbie to site.

[Joaclp]

I have been on prednisone for 15 years as treatment for a number of autoimmune conditions (autoimmune hepatitis, HLA B27- positive spondyloarthropathy, possible seronegative RA); pred was used to combat inflammation after a serious reaction to biologics. A new rheumy in a new city has questioned dxes, found advanced degenerative disc disease, and has helped me stop taking opioids. I iust began switching from pred 7mg to 30mg hydrocortisone and then started having muscle aches and pains suggestive of PMR along with very bad fatigue. ESR is at 57; was over 100 for years. I also have bad peripheral neuropathy. I wonder if others have had problems getting a differential diagnosis. I'm sorry this is so long, complicated yet elliptical, and humorless. Thanks in advance.

[PMRpro Ambassador]

I wonder why your doctor feels it is PMR as opposed to a flare of your spondyloaropathy? In the early stages some forms are very similar to PMR in many patients and I know someone who was told it was PMR at first, even having a top GCA expert confirm she probably had had GCA but it was now too late to bother with high dose pred and it should be an approach of symptom-management. The only thing they identified to manage the symptoms was pred but at a higher dose than they were happy with. Then she approached another expert in PMR - who had a light bulb moment when the patient mentioned her night time back pain - earlier in the night than is typical for PMR. Imaging confirmed anklylosing spondylitis and she was switched to appropriate medication - with great results. The "GCA symptoms" had been due to the AS in the neck region interfering with blood flow.

HC is not as good at managing inflammation as pred - simply because the antiinflammatory effect does not last as long. HC is a short-acting steroid with an effect for maybe a third of the time pred works - and for a lot of people even pred doesn't last for 24 hours. I think that alone could account for the return of symptoms - especially if you are not splitting that HC dose correctly for your symptoms. I assume they have switched from pred to HC to stimulate the return of adrenal function?

Don't apologise - there is nothing funny about our journey. You have multiple autoimmune disorders - at least you have a doctor who is recognising that your history may not cover all eventualities. However - maybe he is following a red herring in the degenerative disc disease? I'm not saying it isn't there - just that it may be just part of it.

[Joaclp in reply to PMRpro]

Thank you for your thoughtful reply, PMRpro. I just lost what was probably too long an explanation! So, now i will try to be more to the point. Current rheum

[Joaclp in reply to PMRpro]

I lost it again and may go into 'roid rage. Not technical enough. I'll try to answer you: the change from pred to HC is to get me down on meds that everyone thinks I've taken far too long, with the belief that it is too late to wake up adrenals. So I'm tapering slowly to the equivalent of 5 mg pred on more "bioidentical" HC. Now taking 15 mg am and pm of HC with an option to split pm dose.The new dx of DDD is based on imaging that shows changes not consonant with the bamboo spine of AS. Current rheumy in Virginia thinks an ESR of 50 plus not significant. Like my dr of many years in Los Angeles, he is compassionate and seemingly informed, with a rep as a "top" doc in a research hospital. My historical dx in 2003 was based on reported symptoms, sed rate, and markers. The L.A. rheumy thought 3 years of biologics and many yrs of pred put me into remission for the last 5 yrs while osteo took over. He shared articles about HLAB27 spondylo that argue for a different presentation in women, with much enthesitis and tenosynovitis, symptoms I had along with patches of Psoraisis. And there is more....

As for now, i have pain in shoulders, buttocks, hips, and thebusual BACK, difficulty rising from a chair, legs that lock when walking, and extreme fatigue. The question is: is this PMR or another condition related to change in meds, DDD, bursitis, or neuropathy, all of which I seem to have?

Have others on this site had similar complicating factors? I'm not sure I am posting correctly. Perhaps all this should have gone into my profile. I hate being so self-involved.

Thanks for your insights and the benefits of experience. Everyone here is so kind and thougtful. Joa

[PMRpro Ambassador in reply to Joaclp]

No, no, you are posting fine - here on a thread it will be seen by many, it is unlikely to be seen on your profile except by very devoted followers. Though you could put it there as well.

I'm really not sure that the lady I mentioned had the typical bamboo spine presentation - she did have enthesitis though. Do you have the other signatures that NSAIDs help - and response to anti-TNF biologics? Was it one of them you reacted to?

If you have had signs of psoriasis that surely makes something in the direction of a spondyloathropathy more likely? It is a very popular push on the part of many rheumies we have experienced - looking for signs of that rather than PMR! My own personal feeling is that there is a whole range of each of the labels they want to attach to us - and the spondyloarthropathies are a range in themselves as I understand it. There is also the point that PMR can also last for life - for some 5% it is thought - and so do most of the others a/i disorders we are looking at here.

And whatever it is - I think you are right in suggesting it could be a response to messing about with medications. There are a few people on the forums who have proven secondary adrenal failure and who have not responded well to switching to HC. More bioidentical or not! As for problems getting a differential diagnosis - any diagnosis can be a problem and in a/i in general it iis always a problem!

PS - can you write long and complex stuff in Word and then copy and paste?

[Joaclp in reply to PMRpro]

You have given me much food for thought, especially about spondyloarthropathy. The intellectual stimulus of learning about my illnesses used to help me deal with the misery. I'd forgotten and have gotten a bit passive.

My pain didn't respond to Remicade, Enbrel and Humira, but the inflammation went down a bit. The side effects were heart palpitations and changes in my blood that indicated pre myeloma or lymphoma. NSAIDs never have helped much. Opioids did make a dent in my pain, at a price. When I was 56, in 2002, I was very sick with AI hepatitis and was on very high doses of Pred (100mg+) for 6 mos. I wonder how that affected the course of later illness and treatments, because the first musculoskeletal problems appeared when I went back to work. The symptoms I am having right now seem similar to the first twinges then. Maybe that's the connection with a flare now, or maybe I'm misremembering.

My longterm dr used to lament how inadequate his profession was, how diagnoses were approximations, and how he the best he could do was try to relieve pain. This strikes home about the problems of getting a diagnosis, doctors differing in opinion, and so on. By the way, if PMR is vascular, why can't they measure it or test for it as they do for GCA?

I'll end with wondering why the rheumatologist who thinks I might have PMR hasn't upped the pred or HC.

I am rambling.

[PMRpro Ambassador in reply to Joaclp]

They can't really measure or test for GCA any more than they can for PMR - except since it is large blood vessels that are affected they can use ultrasound and a biopsy - but although the biopsy is 100% certain when it is positive, if it is negative you are no better off as all that means is that they didn't find what they were looking for, the giant multi-nucleate cells, and there are a lot of reasons for that so you could still have GCA. The ultrasound is good when it is available but the same applies - the GCA may not be affecting the arteries that are accessible. At the PMR end of the spectrum it is most likely to be the tiny vessels that are affected and they are difficult to see. PET-CT or PET-MRI might be a good thing - but it is very expensive and still limited facilities in many places so often kept available for cancer diagnosis.

If 3 different anti-TNF biologics didn't improve your pain it would suggest it ISN'T AS. And if he DOES think it is PMR - you are quite right, he should be increasing the pred, not reducing it.

Six months of that high a dose of pred won't have done much good to your muscles - have you ever seen a physiotherapist for appropriate exercises to help that side of things?

[Joaclp in reply to PMRpro]

Thank you for putting so much thought into your replies. One can see that you play a big role on the site as a medically informed and empathetic commentator.

I do see a physiotherapist and I probably need to find out what my rheumatologist really means about PMR, before my next appointment 4 months from now. There is a need to separate out, if possible, what is an SpA flare, and what is due to neuropathy, bursitis, DJD, or medications like gabapentin or hydrocortisone.

I was tempted to go much further into my complicated history, but I will spare you. I did exaggerate a bit about the ineffectiveness of TNF inhibitors. They helped both symptoms and inflammation levels (ESR and CRP levels) and allowed me to work for almost 7 years more. The blood changes were especially scary, since my father died of multiple myeloma.

Thanks again, PMRpro and kind regards, JoAnne

[Joaclp in reply to PMRpro]

I thought I had ended this thread, but I find I have a few questions for you. And, I have become dependent on your expertise. Is the leg pain and difficulty walking with PMR thought be a form of claudication? The term was used, loosely, in discussion of my non-diabetic neuropathy. Leg "locking'" is one my symptoms for which I am seeking an explanation and treatment.

Several threads connecting PMR to arthritis led me to links you posted in the past to UK medical sites that discussed spondyloarthropathy(ies)--they were very helpful and intelligent. US medical sites either dumb down information for the lay person, or they are way too technical about research, IMHO.

One (probably silly and thin-skinned) question I have: Is there a reason no one else responded to my post? I might try simple rubrics such as "gabapentin" and "getting a diagnosis", if I thought I was here legitimately even though a dx of PMR is in question. By the way, the rheumatology nurse said the dr. was waiting for blood tests, and also to see if I tolerated HC after 4 weeks and my symptoms abated accordingly, before even considering going back to and increasing pred! So, a fairly standard skittish reaction to steroids.

I envy you being in Italy. My husband and I lived in Rome and the Ticino--Lugano--for a number of years, and I travelled to Italy fairly often for my job as an art curator.

Many thanks again, Joaclp

[PMRpro Ambassador in reply to Joaclp]

"Is the leg pain and difficulty walking with PMR thought be a form of claudication?"

Difficult to say - I had leg pain and walking wasn't easy but it wasn't claudication in the accepted sense of the word. I DID have thigh claudication though - a couple of minutes on the crosstrainer and I had horrendous thigh pain that faded as soon as I stopped only to return if I started again. Many of us experience the PMR waddle - but I wouldn't say it was claudication as such. My claudication was probably because really what I have is more like LVV, large vessel vasculitis.

"Is there a reason no one else responded to my post? " - possibly because it is, at first glance at least, fairly technical. Most people would glaze over at the genetics reference and assume they knew nothing to help. Which isn't true - you asked if others had problems getting a diagnosis and the answer is, yes, loads of us do. But maybe most people here at present are definitively PMR or GCA and think they can't relate to anything else. I lurk on the Vasculitis and Lupus forums - it is all relevant somehow.

Seems a strange attitude to the pred/HC conundrum. Look forward to hearing the next installment.

[Joaclp]

Thanks for all your attention to this. The leg locking and neuropathy are horrendous now. Like you, I have a complicated history, more than I recounted here. Just saw surgeons for feet and knees, have had 2 knee replacements years ago, to rule out mechanical problems. May well, like Coco, have spinal fusion this fall. I want to tell you more but am soooo tired right now from painful flare. Just want to send my empathy and thank you. It means a lot. Xx

[Djlr]

I was reading your post & my Husband and my Daughter are positive for HLA-B27

My husband has more or less arthritic Back Problems, but my Daughter was having extreme pain in her mid-late teens, Extreme Fatigue, joints swelling, positive ANA, so I thought it may be Lupus, like me.

FINALLY we got a rheumatologist that discovered the HLA-B27 and she diagnosed her with “Ankylosing Spondylitis” - which is different from spondyloarthropathy - upon which she started a monthly self-injection biologic - “Humira”.

Her symptoms are much better - not gone, but better.

Have they considered a biologic for you since they help with many rheumatological diseases?

So glad you are off the prednisone- it destroys bone and with your degeneration of the spine that could be extremely detrimental.

I do hope the hydrocortisone does help with the pain and the neuropathy. I know that my mother uses large gel padded “footie” ice packs to help with the peripheral neuropathy. This one is helpful to my mother and the burning foot pain.

smile.amazon.com/dp/B0017LB...

You might ask to see if a “biologic” could help, it is supposed to help in Ankylosing Spondylitis by helping the bones not fuse together and keep the immune system at bay.

We have to live with a sense of humor with each of these diagnosis's, or we could go mad😫 but we keep pushing our doctors to help us find different solutions (as you have been doing😊) to help with our pain 💜

[PMRpro Ambassador in reply to Djlr]

I wondered if you had noticed that this thread is a couple of years old?

[Joaclp in reply to Djlr]

Thank you. Yes, I have been on biologics. My newer, 3 yrs old, symptoms are related to progressive neuropathy of both myelinated and unmyelinated nerves and I have had trouble finding a good neurologist. I have a weird complex of autoimmune symptoms that don't fit any single diagnosis! I don't have the energy to explain it all here right now. All the best to you.

[PMRpro Ambassador in reply to Joaclp]

You know what I'd say - you have joaclp syndrome

[Joaclp in reply to PMRpro]

It would seem so. I think Sjögrens (confirmed by lip biopsy but not serology) plays a large role in my autoimmune conditions and especially the neuropathy. Thanks to a really brilliant neurosurgeon, in September I am to see a neurologist that has written a lot on the subject. It is also thanks to friends on the Lupus forum that avenues are opening up for me. More than you might want to know about joaclp syndrome? 😊

[PMRpro Ambassador in reply to Joaclp]

Not at all - it's a hobby horse of mine when it comes to a/i disorders. They can't just stick us into neat little boxes - well, they do, but they shouldn't.

LupusUK is amazing!