been to the gp, card carrying PMR now

[hazmatrec]

hallo!

well, forty five minutes with the gp. he's confident with pmr diagnosis, but slightly concerned that the corticoids will obscure the things we've been keeping an eye on for the past bunch of time, which is why he was hesitant, and hoping he could get a quick rheumy consult organized. he could not, they wouldn't take a 'non emergency'. I've got a steroid card, and some bone density stuff to start taking soon. i already have a vitamin d deficiency so it's just upping the dose there. he's going to ring a follow up appt in about two weeks to see if i should start reducing the dose or no. physio begins Monday.

i was started on methotrexate for a bad skin thing a few years ago, but the liver monitor went into the red, with the alt test result over 500, so that speed quickly. i hope the liver can handle steroids, because i really like putting my coat on myself.

it's good to know you folks are here.

x cath

[PMRpro Ambassador]

Physio? If that is supposed to be for the PMR be very very careful. Repetitive actions are poison for PMR and physio rarely helps PMR itself, It is really important to have a physio who understands PMR and very few in the NHS do I'm afraid.

I get physio - but for therapeutic massage to relieve myofascial pain syndrome and greater trochanteric pain syndrome which I have as well as PMR. I've been using it for years and know that I may well feel worse before I feel better because it releases the same inflammatory substances as cause PMR but they are localised in the muscle fascia and in knots in the large muscles rather than systemic. Some people just cannot tolerate massage.

[hazmatrec in reply to PMRpro]

about four months ago, disability north in conjunction with sport England offered some sessions for free with a physio to people who use wheelchairs, have limb impairment, visual impairment, hearing impairment, learning issues, mental health issues. i asked if i was eligible, and i was. it was magic. he was able to go at the right speeds, the right levels, understood when i talked about hot needles and what 'slight incline' meant to me. but, when i stopped being able to lift my arms above my shoulders, or my knees above thigh level, or get my coat on... physio was beyond me. but he is to whom i am going back tomorrow, and he says he is familiar with pmr, and steroid therapy and the breathlessness addition, and we'll be able to work where i am. a lot of what we were doing was not rep of a movement, not like '10 pulls' so much as move into this position and see what that muscle is about. or see how that tendon, lig, responds. hypermobility, hooray. reps just made me flex too far anyway.

[PMRpro Ambassador in reply to hazmatrec]

That sounds brilliant!

[hazmatrec in reply to PMRpro]

we'll see how the physio on corticoids goes tomorrow! i hope i haven't put too much magic into my hopes.

[PMRpro Ambassador in reply to hazmatrec]

Fingers crossed they really DO know about PMR!

[HeronNS]

Will you have a DXA scan before starting any "bone density stuff"? Really there are very few people who actually need it although it seems to be automatically prescribed. There are other ways to maintain bone density, even when taking pred.

Physio was no help to me prior to diagnosis. Afterwards I received physio from a therapist who had experience treating others with PMR and she worked on releasing very tense muscles. Mostly they were treatments during which I was passive, no exercises to take home. Later I got some exercises to help specific problems, merely adding to the collection of exercises I'd accumulated over the years, and I continue to to those without problems. The thing about standard physio is the prescription to do repetitive exercises and gradually build up the number or difficulty of those exercises - this is not good for PMR, especially in early days when the disease is still quite active.

I should add that one of the things to help maintain bone density in a natural way is appropriate exercise - walking is good for both bones and PMR.

[hazmatrec in reply to HeronNS]

i think I'm at risk of osteoporosis, so just going ahead with the sit still medicine. my mom had osteo. i was vit d deficient for likely quite a while as well as undiagnosed hypothyroid. i started smoking when i was nine, altho not now. my diet as a musician and as a food bank user is not as high in calcium as it could be, and the youngling gets the yogurt. my exercise levels have been absolutely awful. trying desperately to change that. even if couch to five k is not my way 🙄.

[HeronNS in reply to hazmatrec]

Did your bone density begin to improve after the hypothyroid issue was treated?

You can get calcium from some fairly inexpensive plant sources. In fact dairy is not necessarily the best source of calcium. Some of these are costly or harder to come by, but others not, especially leafy greens when in season:

healthline.com/nutrition/15...

[hazmatrec in reply to HeronNS]

i get frozen spinach and try to add some in to anything in cooking. my husband works an organic farm, and there is some good stuff coming from there . but I've got some foods that punch my gut bad, sadly beans and pulses, cabbage, most grains beside corn se me swell, it all gets annoying. i just want to not think some days. pumpkin seeds, sunflower, yum. almonds out of my price range. i don't know what my bone density is. i just know I'm likely prone to lose it.

[HeronNS in reply to hazmatrec]

There is calcium in lots of foods. I also believe that appropriate exercise is just as important. Even walking, and sensible weightbearing exercise, because the weight stimulates the bone-building cells.

Can you eat eggs? Apparenlty we can absorb the calcium from the shells, although I haven't tried it, at least not recently:

healthline.com/nutrition/eg...

[piglette]

As HeronNS mentioned have you had a Dexascan to see if you need a bone density drug? Personally I would not take anything unless it was proved that I needed it. My GP was very keen I should take Alendronic Acid as I have been on steroids for a while, however the results of my bone density scan are really good. If you take steroids long term it is normal to have vitamin D with calcium as well. A lot of people diagnosed with PMR seem to have vitamin D deficiency to a greater or lesser extent.

Personally as the others say I should be very careful of physio for PMR. I did actually go to an osteopath after I had been taking steroids for a while and she had a couple of other patients with PMR as well. Do try and check your physio has knowledge of PMR. I found swimming was good taking it easy to start with and just walking along, crawl can hurt shoulders.

Around 75% of people with PMR never see a rheumatologist. Those who do see them is if the GP is none too sure about PMR diagnosis or there is some unusual problem.

[hazmatrec in reply to piglette]

i think the gp wants me to see the rheumy but thinks that now that treatment's started, they won't find anything. heh. so i think he's going to add the pmr to their files but then see what that diagnosis, se what effect it has on perspective of signs and symptoms. so gp to rheumy consult instead of sending me in. I'd love to swim again, but unless i get a one to one carer, I'm not allowed. and i can't afford it.

the reduction in pain in getting from being on the steroids, i will do what is needed to stay on them, i will jump through their hoops. I'm usually minimalist and reluctant, but i haven't had this pain level for over eight years I'd say.

[piglette in reply to hazmatrec]

Steroids are a wonder drug. Are you able to get hydrotherapy?

[hazmatrec in reply to piglette]

i don't know. i can ask. that would be great.

[piglette in reply to hazmatrec]

If I had loads of money I would organise to have hydrotherapy pools around the country. I think they are so helpful. The one at our local hospital broke down two years ago and has not been fixed yet. There is a place where you can pay locally though. You could also try a swimming pool that is not so deep and just walk up and down.

[hazmatrec in reply to piglette]

yeah. I'm just not allowed in the pool without a carer. they have a shallow end.there's a hydrotherapy nhs really nearby. i will ask the gp.

[piglette in reply to hazmatrec]

Are you allowed to take a friend? I often go swimming with a friend. Good luck with the hydrotherapy pool, it will do you good.

[jinasc]

The only thing that helped me was Bowen Therapy - just put it in your search engine and read up on 'Tom Bowen'.

If PMRpro had not told me her back story, I would never have known about Bowen and probably would still have been in the wheelchair, which was were I was sitting when we first met. I was so pleased I had said "Yes" to a request to squeeze her into a meeting. All the benefit of that 'yes' has been gold.

[oscarandchloe in reply to jinasc]

I tried Bowen just recently -lovely lady (ex-theatre sister so no sham) in her thatched cottage due to Covid restrictions. I wanted it to work and it was very pleasant but £150 later and no effect on muscles or anything else. She seemed disappointed too.

[PMRpro Ambassador in reply to oscarandchloe]

A good Bowen pratitioner will tell you if it hasn't worked in 3 sessions it probably won't for you. I could always feel a distinct difference after the first session even if it wasn't fully sorted and any improvement was worth it for me!! I did need more than 3 - not at any one time really but needed repeats every 6 months or so. But I liked the sessions as relaxation - almost as good as a decent massage! It doesn't work for PMR itself - just te add-ons, as I call them.

[jinasc in reply to PMRpro]

Yes, I did need more at first, but then three sessions every 6 months - kept me going.

[PMRpro Ambassador in reply to jinasc]

Mmmm - but you did have a result in the first session - which is always comforting that it IS for you!

[jinasc in reply to PMRpro]

Too true.

[hazmatrec in reply to jinasc]

thanks for the info. I'll have a read. i don't have funds for much.