PMR and GCR

[bumpermac]

Pain in shoulders and upper arms + severe buttock pain dx PMR then saying i had headach e wwithout jaw pain ets. All markers normal, extensive eye exam and now artery biopsy everything clear........what could it be. On 40 mg steroid feel awful...weak and shaky bad sleep . B\ack to rheumy next week fingers crossed

[olive2709]

40mg steroids will make you feel like hell. I have GCA came on very quick haven't got a clue connected doc because of family history of mini stroke.All I had was a feeling I had been punched in the temple and balance was not normal . Check out advice on sleep on here the side effects are rotten just be kind to yourself. How long have you been on pred read up on reduction most GP don't have a clue

Olive

[PMRpro Ambassador]

You haven't told us the really important sign: Have any of the symptoms improved with the dose of pred you are on?

It is possible to have both PMR and GCA (either or both) with normal blood markers, this happens in about one fifth of patients so isn't particularly unusual but some doctors seem unaware of it. A normal eye exam really only means that the blood supply to the optic nerve hasn't been affected and you can have GCA in other arteries. And the negative biopsy also doesn't mean very much since it is positive in only about half of cases. This can be due to several factors. The inflammation and giant cells may not have reached the temporal artery at all. When they do get there it isn't evenly spread along the artery, it can skip bits and if they happen to choose one of those sections there is nothing to see and they also don't look at every single bit as that could be hundreds of slides. It is also possible to have a large vessel vasculitis that doesn't cause the giant cells to form but that does usually lead to different signs in the biopsy.

Other things that can cause similar symptoms are other forms of inflammatory arthritis and they should be ruled out when making the diagnosis. Vit D deficiency can also cause the muscle pain but I'm not sure about the headache side. There are other autoimmune disorders that can cause the symptoms as well but the rheumy should be well aware of that.

The shoulder, arm and buttock pain can also be the result of something called myofascial pain syndrome (MPS) which is inflammation due to concentrations of cytokines (the same inflammatory substances that cause PMR but then they go all over the body via the blood stream) at trigger points particularly in the shoulders, alongside the spine about rib level and in the lower back, about where the dimples are on a baby's bottom. Knots form in the muscle as a result and any of these can cause more muscle tension and spasm. This in turn irritates nerves and can cause referred pain into the neck and upper arms, ribs, buttocks and upper thigh.

This video actually describes it fairly well and also mentions the ways it can be treated.

spine-health.com/video/myof...

This and the Mayo and Cleveland clinic articles you find by googling myofascial pain syndrome make it quite clear it can easily be confused with PMR and can also cause headache. PMR responds well to moderate doses of oral pred, MPS will improve to some extent but not so dramatically. I have had local injections (if you can call injections all over my back local!) which have pretty much sorted it out now but it took a long time (months) because it had got so bad. Previously I had kept it under control using Bowen therapy but I had moved and there wasn't a therapist to be found here. Massage can also mobilise the trigger points and have a very good result.

Hope this helps - but do tell us if pred has had any beneficial effect.

[bumpermac in reply to PMRpro]

Thanks for replies.....30mg pred worked on body pain in half a day...miraculous ! but after rheumy raised to 40mg no significant change in headache ( acttually its more in my eye socket than in my head thats why I went to opthalmic surgeon ( he did biopsy) . If I could just function a bit more Id be fine ! Also blood tests showed I waas severely deficient in B12

less than 100 should be about 140. Started b12 injections last week one a week for 5 weeks ...OUCH.... Could all be connected I guess...so good to moan to others on this forum. Thanks a mill !

[Celtic PMRGCAuk volunteer]

bumpermac, I recently heard about someone diagnosed with PMR and no improvement in spite of steroid treatment. A clued up rheumy discovered the lady had a B12 deficiency, treated her with injections and all her pains disappeared. Let's hope you will soon feel much better after furtherB12 injections.

[Hidden]

That's interesting Celtic. I was severely deficient in Vit B12 ( level 75 ) and also Vit D deficient when I became unwell at first. Unfortunately replacing both of these made no difference to my symptoms!

There was a recent poll in the vasculitis forum, a significant amount of people were deficient in these 2 vitamins at the start of their illness, it seems to go hand in hand with some auto immune disorders for some patients.

I hope your B12 injections help bumpermac.

[bumpermac]

Thanks all of you . ill keep in touch