Struggling to accept/deal with pain and decreased range of movement

[wakinguptolife]

Hi, I was encouraged by medics to wean off and stop prednisone after 2 yrs on them due to osteopenia and inflammatory markers "normal". I did so in July 23

I am trying to continue to work as a nurse and occasionally take one dose of 400 mg ibuprofen a day/night which works well. I have pain in outer upper arms and restricted movement (ie taking off tshirt). I also limp due to pain in left hip (MRI in April showed chronic tear in adductor muscle). I am due MRI in that hip 28 Sept.

I am going to complementary therapist who does massage, aromatherapy, magnets and cups approx every 2 weeks. I have about 4 A4 pages of exercises for neck arms and legs that I do every day (apart from yesterday when I just gave up). I try to eat healthy (night duty every 2 weeks makes this difficult). I am trying to give up smoking and get a few days/weeks and then with stress/cheerfulness I take them to help me get a grip and feel like an adult again.

I wonder if these pains and stiffness are the residual pmr or if it is myositis/permanent degeneration that will be here forever.

I would be grateful for any advice. Thank you.

[wakinguptolife]

Correction "cheerfulness" was tearfulness - predictive text playing tricks 🙄.

[DorsetLady PMRGCAuk volunteer]

2 years may be PMR lifespan for some, but not all, so I would say yours is still alive and kicking - so you do need to be on the Pred….. nothing else works.

As for ‘normal inflammation markers’ - when you were on Pred they should have been in that range, that just shows the steroids are doing what they should be doing, not that the PMR has gone. Plus not everyone has raised markers, in fact up to 20% of patients don’t - and just for interest have you had them done again recently? They my well have gone up again with the resurgence of your illness.

Osteopenia - doesn’t necessary become osteoporosis- and most people over 50 have signs of it - whether on Pred or not. Have you had a DEXA scan by the way?

Think you need a frank discussion with your doctors - and get back on the pred…. Not being on them will make your working life considerably more difficult, and without them, your PMR will just get worse…

You may only need a small amount right now, not right back to normal starting dose of 15mg, but the longer you leave it the more difficult it is to get back under control.

[wakinguptolife in reply to DorsetLady]

Thank you.

[PMRpro Ambassador]

I think it is far more likely to be PMR that is still active at a low level. It is a myth that PMR only lasts 2 years. Of course markers are "normal" when you are on enough pred - it flummoxes me that doctors appear not to understand how PMR and pred works!

I would say that 98% of us are classed as "osteopenic", it isn't a pathological condition, after the age of 30 our bone density slowly falls over time and the dexascan result is comparing the bones of an older person to the average at 30, It all depends on the degree - osteopenia ranges from barely less than average at 30 to almost osteoporosis and it is a pretty wide range. Even if your t-score in the dexascan is nearing the -2,5, which is the point they call it osteoporosis, then there are ways of stopping that decline with medication - there is no need to stop the pred if you still need it to manage the PMR inflammation. You may well only need 1mg to feel OK, far preferable to taking ibuprofen long term which doesn't work anyway.

I won't repeat what DL has said - but I agree with it all.

[PMRpro Ambassador in reply to PMRpro]

PS - Estelle has reminded my to say if it were myositis then you need pred. Myositis is inflamed muscle and the treatment is pred - usually at a higher dose than for PMR though for a shorter time.

I suffered steroid myopathy during the short time I was on methyl prednisolone - as soon as I stopped taking it it resolved and the muscle returned just with walking, and at the time I was on crutches because of achilles tendon problems. It is very obvious when you have steroid myopathy, your thigh muscles just disappear!

[wakinguptolife in reply to PMRpro]

Thank you.

[Estellemac]

If you are a member of the charity there will be a link soon to the speakers presentation at the AGM on Saturday on myositis and the similarities to PMR. The Physio presentation was really good. They both had a good understanding of PMR exercice and muscle damage from pred.

[wakinguptolife in reply to Estellemac]

Thank you. I am not sure which charity you mean Estelle (? Myositis). I would like to see physio presentation when available.

[DorsetLady PMRGCAuk volunteer in reply to wakinguptolife]

PMRGCAuk - if you need to ask I guess you're not a member.

[wakinguptolife in reply to DorsetLady]

I thought being on this was being a member, but I guess not. I live in Ireland and unfortunately we do not have the support systems here. I shall go on to website and join. Thanks again everyone.

[DorsetLady PMRGCAuk volunteer in reply to wakinguptolife]

No, on here you are a member of the forum on HU … and you don’t need to be member of charity to use it… but for £15 it’s worth joining charity - and you don’t have to live in UK - see this welcome post -

healthunlocked.com/pmrgcauk...

[wakinguptolife in reply to DorsetLady]

Just submitted to be a member - will take approx a few weeks, but sure I'm on the road. Thank you for your patience this morning folks - more hopeful now.

[DorsetLady PMRGCAuk volunteer in reply to wakinguptolife]

Good….

[Estellemac in reply to wakinguptolife]

PMRGCAuk it was the AGM and members day on Saturday. The three talks were very good.

[wakinguptolife in reply to Estellemac]

Thanks Estelle. When my registration is through I'll look them up.

[Karenjaninaz]

I suggest taking the amount of prednisone. It gives you a good quality of life so that you can work. Then you can taper very slowly based on your symptoms; this is until you go into remission, which may take several years. We have so many tips here getting through this..

The alternative treatments with magnets has no bases in science for PMR.

The most important thing is to keep moving; this you can do if you are relatively comfortable. This will help prevent stiffness

(Ret. Nurse Anesthetist USA.)

[ImC_]

I guess you are taking Calcium/D3 and K2 for the osteopenia? Seems a shame to suffer pain and restricted movement unnecessarily if you really can have the 'cheerfulness' instead of 'tearfulness'. Easy for the medics to inflict lower quality of life on you. Hope it works out for you.

[wakinguptolife in reply to ImC_]

Thank you. I am taking valium and D3 but not K2. I have GP appt 3/10 so will ask her about K2 then.

[DorsetLady PMRGCAuk volunteer in reply to wakinguptolife]

GPs don’t prescribe VitK2 - and many don’t know much about it, and do mix it up with VitK1.

This info re difference from HeronNS

Vitamin K2 (K2-4 and/orK2-7, K2-7 is preferred) Please note that Vitamin K2 (not K1) is nearly absent from modern diets, and is the vitamin that guides calcium into our bones rather than letting it collect in our organs or inside our blood vessels. Unless you have access to grass fed cattle and their products, and free range hens eggs (not grain fed) you will almost certainly need to supplement this vitamin.