Visit to Rheumatologist 30/12: Firstly I trust... - PMRGCAuk


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Visit to Rheumatologist 30/12

violetsnowdrop profile image
16 Replies

Firstly I trust everyone has enjoyed the Christmas & New Year festivities.

This time I went into the meeting feeling buoyed up by the news that all blood tests were normal ( for me, that is!), BP was 126/85 with pulse of 56, I have LOST one kilo in the last month AND I am down to 6mg Pred.

I asked whether all the aches & pains were due to Pred withdrawl or from PMR and was answered with:-"Because the biopsy in April was of too small a sample and because I had already been on 50mg Pred for a week it was like looking into muddy water. The fact that blood tests have been similar for the last 8+ months has added to the puzzle. There is still no clear diagnosis but I can offer you a Cortisone injection for your left shoulder, which seems most affected."

I accepted both the injection offer and the advice to slow down to 1mg per month reduction.

Although I have had a fairly uneventful slide down from 15mg I still have problems with most arm & leg muscles & tendons as well as the ever-present lower-back pain, have puffy eyes,a moon-face and skin that marks without me being aware of it. I seem to have left behind quite a few other side-effects so not all is bad!

16 Replies
PMRpro profile image

There are some orthopaedic experts who have identified a link between myofascial pain syndrome and PMR. In MPS there are trigger spots in specific places which have high concentrations of cytokines (they've measured them) and cause the surrounding muscle to become inflamed and spasm - in some ways a bit like fibromyalgia for the spots and PMR because it is the same substances that cause the inflammation. There are commonly trigger spots in your shoulders (near your bra-straps) which can cause referred pain into the neck and the shoulder joint and in the lower back, sort of where the dimples are to be seen a couple of inches right and left of your spine. I had it really badly last year, to the stage I was admitted to hospital for treatment, I couldn't move without excruciating pain. I reacted badly to that treatment so they then moved to the second choice - cortisone injections into the trigger spots and the surrounding spasmed muscles. It has taken quite some time to really sort it out, partly because the first set of sessions finished a bit early and it came back. However, as it has improved the PMR has also improved and I have been able to reduce my pred dose dramatically for me, getting down to below 6mg for the first time in over 4 years.

The treatment I have had is not common in the UK (I live in Italy) but I have had similar problems in the past and my osteopath, Bowen technique and massage to mobilise the spots worked well.

violetsnowdrop profile image
violetsnowdrop in reply to PMRpro

PMRpro--- you seem to have hit the nail on the head (sic) with the trigger points but I also have discomfort on both inside & outside of elbows and also hamstring , groin and sciatic nerve areas.Never all at once, they seem to take turns to pester me!

When I visited GP in September I was told to roll my sleeve up and was given a flu jab there & then! Have had no adverse effects from it though!

dimas62 profile image
dimas62 in reply to PMRpro

I too have wondered about links between PMR, fibromyalgia and myofascial pain. About 4 years ago following shoulder surgery for calcific tendonitis I had a lot of widespread pain and happened to find an internet article about myofascial pain. It suggested thinking of the fibres connecting your muscles as a woollen jumper that had shrunk in the wash, preventing the muscles working and causing pain. I was able to find a therapist trained in myofascial release and had several treatments. The results were amazing! HOWEVER it was no gentle massage, it was full on manipulation and I was warned that if I wasn't sore the day after it hadn't been done properly! I have a lot of tender areas now but am concerned that such a 'violent' treatment may be detrimental to the PMR pain. Would appreciate any advice as I am still new to PMR/GCA

Celtic profile image
CelticPMRGCAuk volunteer in reply to dimas62

Dimas, a physiotherapist talking at one of our support group meetings advised that manual physiotherapy techniques are contra-indicated in patients with PMR and on long term steroids, adding that a gentle stretching and exercise programme could help with the secondary effects of limited function.

When on the very low steroid doses, I did embark on some physio treatment for a painful shoulder blade and upper arm area BUT the physio concerned understood the need for caution in PMR and used just gentle massage, heat and ultrasound techniques which all proved very successful.

DrWhoFan profile image
DrWhoFan in reply to Celtic

I am interested in what you say about physio. I have PMR which morphed into RA, and am due for physio next week for shoulder and knee pain. I wonder what they will do. This is my first day on this group. Anne

PMRpro profile image
PMRproAmbassador in reply to dimas62

Since I see Celtic has already mentioned the problems with physio/massage in PMR I'll go a bit further than I did before! Celtic - what we are talking about is NOT "the secondary effects of limited function", it is something completely different and I am absolutely clear that physical therapy in the sense we meet it in the UK MUST be adapted in PMR.

Yes - the myofascial release is not particularly gentle done properly and "normally". There are a few different ways of going it and here the attention was directed at the trigger points and was more like a rubbing action to separate the layers that are stuck together if you get what I mean. Both 2 physios and an anaesthetist who is a pain specialist have done similar actions and I derived immense relief - at first it was relatively gentle but later they may use their knuckles to be able to exert more pressure over the spot!

Personally I have never had a problem other than the pain the day after (which I expected so wasn't worried) so I suspect that if it is kept directed at the trigger points there is less of a problem then if a more general massage is done. The trigger points are foci of cytokines, a small volume of tissue that is extremely inflamed as a result, and the theory would be that the heavy attack releases them into the surrounding tissue so the blood stream can remove them. Logically, that would lead to a period of more widespread and generalised inflammatory action. The pain specialist has taken some time this time to work using injection techniques to relax the surrounding muscles before digging her thumbs into the more localised bits. It has taken a long time (several months) but the difference now is unbelievable! The injection techniques themselves are exquisitely painful at the time - you often hear the squeals from outside the room - but only while the needle is inserted, it goes quickly afterwards.

Violetsnowdrop - the elbow (and hip area) pain you describe sounds to me like the pain I had during the first 5 years I had undiagnosed PMR. It eventually reached diagonally from the elbows to the wrist and gripping anything was agonising! The hip pain came later when the PMR got really bad and was finally diagnosed. It was bursitis/tendonitis/synovitis depending on which bit was sore and eventually faded with pred - but I never was able to get below about 10mg until it all went. The hip and leg problems I had - same thing, faded to some extent then returned and has finally gone after localised cortisone injections in the outer hip area and the low back bits being sorted out.

The myofascial pain syndrome causes what is called referred pain - it radiates from the focus of the inflammation because it makes muscles contract and they pinch nerves in much the same way as a "slipped disc" in the spine can and lead to sciatica. A lot of sciatica where the docs say they can't find a cause is possibly due to this effect - mine certainly was. Deal with the spasmed muscles and the sciatica will go away - and for me the pain followed the entire line of the sciatic nerve, down the side of my knee and even into my ankle. I'd seen an orthopaedic specialist the year before it got really bad who told me it was wear and tear in the lower spine and I'd have to live with it - at times I couldn't walk more than a few hundred yards without awful cramp in my back and I wasn't 60 then! I was seeing him after a whiplash injury. He dealt with a lot of that but there were these bits left - and eventually everything seized up. My physio differentiated between the PMR problems and these problems and I think that is what needs to be done to avoid the more generalised problem many PMR patients experience after physio - any exercises were kept limited, they led to problems, but the mobilisation is a totally different animal and isn't ever overusing a muscle group - that is what lead to problems in my experience.

Oh dear - gone on a bit haven't I! I wish there was a chat function or we could all get together for a proper discussion!

Celtic profile image
CelticPMRGCAuk volunteer in reply to PMRpro

PMRpro - I'm sorry if I caused any confusion in quoting the physio's comments. I've always believed and stressed that manual physio techniques are not recommended for those of us with PMR and on long-term steroids and I have my own initial horrid experience before diagnosis to back that up. Our physio guest speaker was also of the same view. However, from my experience, gentle stretching to which he referred can definitely help with PMR. In referring to a gentle stretching and exercise programme helping with the secondary effects of limited function, I believe he was talking about the period when on the very low doses or at zero Pred when our muscles are trying to recover from the onslaught of steroids.

Hope this makes it clearer for everyone!

MoiraCT profile image
MoiraCT in reply to PMRpro

Thank you, PMR Pro, you have explained exactly what I was finding. I was lucky in my PMR journey, symptoms gone in 20 months, but left with what I called my 'duff leg'. I has previously worried about claudification, as the pain went down from my buttock to my calf if I walked any distance or up any degree of incline. I had started seeing a bio- energy healer while still suffering from PMR (sounds really alternate, but was worried about side effects of steroids, so went the anti-infammatory route), and she had said she could help this with massge. She targeted very specific spots at the side of my spine, and exquisitely painful is a good description. But, afterwards, I walked uphill to home without pain, for the first time in 12 months. I now have this myofacial massage every month, and each time it is less painful and my walking is steadily improving. Checking myofacial massage on the internetsuggests it helps sciatica due to a disc problem, but I always felt it was related to PMR, and your explanation makes perfect sense. Thank you, I now feel the end is really in sight. Moira

PMRpro profile image
PMRproAmbassador in reply to MoiraCT

Thank YOU! It's nice to find someone who, independently, has experienced what I've been banging on about for months! I think a few people were beginning to think I'd lost the plot! Who cares if it is a bit alternative - if the techniques used do the job that's fine and I'll go back! I can put my fingers in my ears to ignore the strange explanations which I don't quite get - what's the matter with saying you are mobilising "sticky" bits of tissue. Since that is what she is doing!!

dimas62 profile image
dimas62 in reply to PMRpro

Mobilising the 'sticky bits' hits the nail on the head exactly! And the symptoms you and Moria have described certainly struck a note with me. Am a bit concerned still whether myofascial massage may stir up inflammation. On the other hand one of the good side effects of my current 35mg pred dose is a huge reduction in tendonitis pain in the shoulders -much better than cortisone injections into the joints - so who knows! This PMR/GCA is a funny old disease!!!

PMRpro profile image
PMRproAmbassador in reply to dimas62

Well in some senses it DOES stir up inflammation - the bits that are being mobilised are little pools of cytokines all crammed into a small volume. Cytokines are the substances that are released in the morning at about 4.30am and cause the morning stiffness seen in PMR and other arthritises. The point is, as these foci, the pred doesn't act on them all the way through so they don't go away. Break them up and although you may feel the effect for a short time, your daily dose of pred can work on them and deactivate them - like a snowman doesn't melt very fast until you knock him down and spread the frozen snow over the surrounding ground for the sun to work on.

Dimas - I take it you had GCA not just PMR if you are on such a high dose?

dimas62 profile image
dimas62 in reply to PMRpro

Yes GCA was the main diagnosis but had been suffering from pain in hips and shoulders / exhaustion for some time. Dr thought it was PMR but original Rheumatologist said it was osteoarthritis and I thought it was all related to tendonitis. But the improvement with the Pred was so dramatic my new Rheumy says she is convinced it is PMR that was causing the problems.

Green_girl profile image
Green_girl in reply to PMRpro

I've been reading this string with interest - and would agree entirely with what you say re physio and the reasons for the pain. I too have a good physio who I have been going to for years for a dodgy back. Once signs of PMR started he changed from the usual eye-watering targeting of painful areas, to gentle, what I can only describe as 'rocking' and stroking motions, explaining that he had to be very gentle - even more so when the pred was introduced. I also have specific exercises from him, which I do mostly in the steam room at the swimming pool, as the wet heat eases painful and 'sticky' areas (GP and Rheumy delighted that I am doing this - so nice to have therapists and medics in agreement!!). It is much better, if you can afford it to use a good therapist, to try this approach rather than expect the drugs to do everything. I have found that the combination of exercises/exercise, plus 'thug drugs' has meant that I have reduced the drugs reasonably well so far (down to a 40mg jab of depo med to last 8 or more weeks). Hope 2014 is a better year for everyone.......

tallgal profile image

I was diagnosed with PMR 2 yrs. ago but this was later changed to RA. After much pressure I decided to start methotrexate. Luckily my GP checked inflammatory markers first to give a base line and later rang me to say -- you haven't got RA as all blood levels are normal. So what had I got. An x ray showed I hadn't got osteo arthritis either. I am cross with my rheumatologist for not checking blood before pushing me onto a toxic drug! but thankful I haven't got PMR or RA or osteo. Evidently I probably had reactive arthritis caused by a reaction to a bug and this can often leave you with bursitis. I am waiting for a steroid injection in my hip as I can only walk with a limp. Beware also that steroids -- I took them for 2 years -- can weaken the muscles, which my physio says has happened in my case./

PMRpro profile image
PMRproAmbassador in reply to tallgal

It is possible to have seronegative RA - no blood indicators and about 30% of RA patients are sero-ve. There is also a selection of arthritises that are usually seronegative. This is what Arthritis Research UK says:

"Arthritis can be generally divided into seropositive and seronegative – this refers to the presence in the blood of an antibody called rheumatoid factor. About 70 per cent of people with rheumatoid arthritis are seropositive. So seronegative rheumatoid arthritis occurs and this may be the diagnosis in your case. I say ‘may be’ because there's a group of disorders generally called ‘seronegative spondyloarthropathy’ and these include ankylosing spondylitis, psoriatic arthritis and reactive arthritis. My guess is that you haven’t got one of these conditions. Seronegative rheumatoid arthritis can be just the same as seropositive rheumatoid arthritis although on the whole it has a better outlook. - See more at:

Yes pred can"weaken" muscles - it can cause muscle wasting and that is something that sould be watched for. But it is just as likely that most patients taking pred are also doing less exercise and that alone will impair muscle function - so indirectly rather than a direct effect. Either way - a good physio will offer suggestions for exercises to maintain your muscles.

tallgal profile image
tallgal in reply to PMRpro

Thanks for the info. I'll have to do some more research and ask more questions.

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