PMR question

[People1]

Can you get severe headaches, neck and shoulder pain with PMR and not have GCA? Or are those symptoms specific to GCA only?

[SheffieldJane]

I have had intermittent headaches throughout PMR. I am afraid you can have GCA and PMR at the same time. Neck and shoulder pain is pretty standard for PMR. They are such closely related conditions, medical science just falls short of regarding them as the same disease. You are on a GCA dose aren’t you? It’s unusual to have breakthrough PMR pains on high doses. Are you in the U.K.? I only ask because I woke with a nightmare.

[Hidden in reply to SheffieldJane]

Hi SheffieldJane, after 5 years ,now on 12.5 mg(PMR) pacemaker 12 weeks(82 yr)-I have neck and shoulder pain, worst 1st thing in morn,some times all over and sleeps.All worst since OP(WAS DOWN TO 9MG)comments would be apprecated-also last week could not keep my dates right- same appointment -went two days running! etc (relatively new -since OP) Thanks John

[SheffieldJane in reply to Hidden]

Hello scubadiver! (John)We haven’t heard from you in a long time. It sounds like your Op has really knocked you about. This was to fit your pacemaker I guess. You are not alone in experiencing confusion with this condition, I turned up a month early for a medical appointment recently. I am sorry that you are suffering so much. What does your doctor say about the pain you are in? I would be inclined to try another couple of mgs of Pred. For a week or so to see if these symptoms settle. You are not trying to do too much are you? I seem to remember that you are an active person by nature. Nice to hear from you, even though the news was not great. Do take care!

[PMRpro Ambassador in reply to Hidden]

I suspect neck and shoulder pain is not unusual after a general anaesthetic - and lying on an OP table won't have done anything any good!

Having said that - I looked and guess what?

medscape.com/viewarticle/74...

There is even a pacemakerclub website where several people ask about it. And this

livestrong.com/article/1945...

does what it says on the tin and provides exercises that should help. If you are worried about doing them alone - head for the GP and demand some physiotherapy to get them right. And ask at the clinic why you weren't told about this...

[bunnymom in reply to PMRpro]

The chart was helpful.i always hear about thigh pain but it's behind my knees that's been bothering me in the mornings now. Thank you.

[Hidden in reply to PMRpro]

PMRpro, just guess, I cannot believe it, Money market says you are so valuable , thank you-and I shall be seeing the CARDI next week,-should be interesting, John

[SheffieldJane in reply to Hidden]

PMRPro is still our star. Here’s wishing you a total recovery! 🦋

[Hidden in reply to SheffieldJane]

Thank you Sheffieldjane, especially as it looks as if you have your child to look after-it does not matter how old they are, that could include me! John

[People1 in reply to SheffieldJane]

Yes on 60 mg for suspected GCA that occurred as a result of undiagnosed PMR. After 24 hours on 60 mg the severe headaches, shoulder/clavicle pain, and occipital scalp tenderness went away and neck pain went away, as well. Left me with severe fatigue and leg weakness, no appetite, but could be the steroids also contributing to that, although to be honest I was so sick with the headaches and nausea I could not eat anyway. I had a year of prior stiffness and pain in neck, shoulder and gelling when trying to go from seated to standing position and scalp tenderness, which my neurologist believes was PMR. I thought it was just fibromyalgia. Not sure if any of this sounds familiar to you or not.

[Rimmy]

I concur with SJ - although I would be at the least very suspicious if I had severe headaches and had only been diagnosed with PMR - but from your other posts I gather you are on a GCA dose of Pred anyway which should be managing any inflammation causing such symptoms ?

[People1 in reply to Rimmy]

Yes Rimmy I am. My initial presenting symptoms of three weeks of non-stop severe headache, nausea, neck and shoulder pain, jaw fatigue, and scalp tenderness were immediately relieved after 24-48 hours on 60 mg pred. Now just left with severe fatigue, leg weakness, pretty much exhausted but perhaps steroids are contributing to all these aspects of treatment. I am not sure how long I am to stay at 60 mg (been on that dose since Sept. 7, about 2 weeks). I had two TAB’s and awaiting results of second biopsy. First was negative.

[Rimmy in reply to People1]

I would certainly stay on at least that dose until you know what's going on but you probably know these biopsies aren't necessarily accurate in lots of cases especially if taken after you have started on Pred. Hope you can get this all sorted soon as you do sound very unwell.

[People1 in reply to Rimmy]

Thank you Rimmy! Will do.

[PMRpro Ambassador in reply to People1]

With symptoms like that I'm surprised they feel a need to put your through repeated TABs - they are textbook - as is your response to pred.

[jinasc]

pmr-gca-northeast.org.uk/us...

Might be useful to read these items.

[People1 in reply to jinasc]

This is awesome jinasc! I will take a look

[PMRpro Ambassador]

PMR is often accompanied by spasmed back muscles - which can cause shoulder and neck pain which may radiate into the back of your head.

Are you thinking you may not have GCA - since Rimmy says you are on a high dose of pred which should deal with the PMR symptoms too.

There is increasing evidence that PMR and GCA are the same disease, just at opposite ends of the spectrum. With large vessel vasculitis inbetween:

academic.oup.com/rheumatolo...

Fig 1 is easy enough to understand even if the text is a bit heavy.

[People1 in reply to PMRpro]

Thank you PMR Pro. My neurologist thinks I had undiagnosed PMR for a year which advanced into GCA. However one negative biopsy on right side and awaiting results of biopsy on left side. I understand it is possible to still have GCA and still have negative biopsies despite TAB supposed gold standard reputation, particularly if 60 mg steroid dosage significantly decreased symptoms of severe headache, neck pain, shoulder pain, nausea, all within 24 -48 hours of commencing medication. I had been on 60 mg of pred for one week prior to biopsy on left side. After that biopsy was negative they biopsied the right side approximately two weeks later having been on 60 mg for two weeks. I do not have results of the second biopsy. TAb’s themselves are no walk in the park. Lots of numbness and soreness in surgical suture sites and a bit of pressure/burning in surgical sites themselves, certainly enough to know they definitely did a bit of work on me in those TAB biopsy locations. Suppose that is also par for the course. I hope this helps to better explain my current situation. For now all acute presenting symptoms as described above are gone. Just wondering if when presenting acute symptoms are gone, the fatigue and leg weakness sets in. I would be grateful for your thoughts and thank you for your kindness and expertise. I will not get in to see an actual rheumatologist till October 15 so trying to figure out what to do about tapering till then.

[PMRpro Ambassador in reply to People1]

What a waste of time and money doing the second biopsy - it is said that only 5% are positive on the second side if the first was negative. AND you had been on high dose pred for 2 weeks..

How long have you been on 60mg? You could try a very tentative 5mg reduction after 2 or 3 weeks - and see how it goes. I assume you have been on 60mg for 4 weeks at least - so a 5mg reduction wouldn't be unreasonable.

[People1 in reply to PMRpro]

Well two negative biopsies. Opthamalogist insists its not GCA. Said the biopsies were the gold standard even at two weeks on 60 mg pred. So strange how the severe headaches, neck and shoulder pain, scalp tenderness cleared up after 24 hours but left me with profound weakness, malaise, no appetite which I still have. At any rate he has me tittering down on a fast reduction with 50 mg for a week, then 20 mg for a week, then 10 mg for a week, then stop all together. The day before I stop I will finally be able to get in to see a rheumatologist. I do not know now if I am dealing with PMR or what exactly at this point.

[PMRpro Ambassador in reply to People1]

Cr*p - TABs are only positive in less than half of patients and negative doesn't mean it isn't GCA, the only thing it means is they didn't find what they were looking for. It is gold standard in that it was all they had and when positive it was 100% correct. That isn't the same thing. It is a clinical diagnosis - you fulfilled all that. We've had someone this week told to reduce from 65 to 30 and she is feeling awful.

Would your GP be a bit more sensible about the reduction?

[piglette]

Hi People1 it sounds pretty tenuous what is being suggested. Why is the ophthalmologist in charge? Is he giving you the pred? You could be in real pain/trouble if it is GCA.