Under treated PMR or Pred Side Effects

[FleetRose]

Hi Everyone

It's not clear to me whether I am not taking sufficient pred to control my symptoms or whether the symptoms are a side effect of pred. I started on 20mg last November and have been taking 10mg since early June after one blip in March when I increased the dose to 12.5 (having tapered to 10).

I have constant low level back but mainly leg aches with weakness such that walking up stairs is very tiring. I can walk one to two miles on a good day using sticks but my legs do not feel as if they belong to me and walking does not feel a natural movement - I need to think about it. Uneven ground is very difficult. My shoulders and arms have always been fine apart from weakness in my arms.

I would not say I'm in pain so do not know if my symptoms warrant increasing the dose. On the other hand I do not live a normal life as I tire too easily. The picture is complicated as I have also had Hashimotos Thyroiditis for over 20 years and am currently on a 3 month trial of T3 (low thyroid can also cause muscle weakness). The rheumatologist did not think I should increase my pred dose whilst on the trial ( too many changes to determine cause and effect). Unfortunately I also have osteoporosis (pre pred DEXA scan showed T score -3.5) so I'm keen to reduce pred when I can.

My original diagnosis was 'provisional' and my symptoms atypical (started June 2022). Apart from the original sudden onset I'm not sure I feel much better now than 9 months ago.

Do you wonderful people have any thoughts? Thank you.

[DorsetLady PMRGCAuk volunteer]

With the introduction of a new drug for your Hashimotos it difficult to say what is causing the problems… and if Rheumy has advised not to increase Pred you are stuck between a rock and a hard place really. How much longer are you likely to be on new drug?

It does sound as if some of your issues are PMR related - and normally we would probably suggest a small increase - say to 12.5mg.

Think you probably need to speak to your Rheumy [and I realise that not always easy] or your GP - who may be able to contact Rheumy for you.

Sorry not to be give a more positive answer.

[PMRpro Ambassador]

Lowering your pred is unlikely to help much with the low bone density - far more useful there would be for you to be started on bisphosphonate therapy of some sort which would help the bone density and is a standard approach alongside

I have similar problems to you but they aren't directly due to PMR, they are myofascial pain syndrome and (probably) arthritis in my lower spine, I still have them despite being on Actemra/tociliumab and they weren't better at much higher doses of pred. I haven't liked walking on uneven ground since I developed PMR and that is quite a complex relationship of back muscles. I have recurring trochanteric bursitis - hate stairs!!!

I agree with your rheumy - until the thyroid trial is finished you shouldn't change anything else because that means you don't know which made the difference. Oral pred doesn't help my back and leg problems - steroid injections would but I can't have them currently as I am on anticoagulant therapy. Physio and the Pain Clinic are my go-tos.

[Koalajane]

You do have a quandary.

Re your osteopenia I take it you are on d3/calcium.

Hope your trial is nearly over so you can do what is necessary to help you

[Labyrinthlover]

Hi Fleet RoseOne of my main PMR symptoms has been thigh weakness, so have to use bannister walking upstairs and manually lift my leg over a stile....

However, agree with the others on advice not to change anything till trial is over......

[marionofnorwich]

I have had PMR for over three years now and your back and leg symptoms are typical of what I have felt all along. In the beginning I could walk ok but noticed that if I walked for 20 minutes it was as though I had walked for several hours in terms of muscle stiffness and fatigue. I am now down to 3.5/4mg (just transitioning) and also have lower back ache, stiff legs and shoulders and walking is just as you describe. Bearable, but wearing. I have felt like this pretty much constantly as I have reduced, especially as I got under 8/10mg. I also wonder if it is still PMR or general muscle underuse but it does feel like PMR. That is my guess for you too but we are all a bit complex, aren't we?

[FleetRose]

Hello All, thank you so much for your prompt replies. My T3 trial will end in 6 weeks. It is an addition to my T4 medication and is intended to help with any muscle weakness/fatigue caused by low thyroid levels. I guess I need to stick out the next 6 weeks without making any other changes.

I have been very reluctant to take bone drugs. I cannot tolerate bisphosphonates and have had multiple adverse reactions to other drugs so an infusion poses a risk (once it's in it's in!). I also wish medics would give smaller doses to very small people like me rather than the same dose as a 20 stone man! This has been refused.

I am still waiting to see an NHS rheumatologist (I waited 11 months for the endocrinologist) and have meanwhile consulted Rod Hughes privately. Of course NHS endocrinology and rheumatology don't talk to each other even though health conditions, especially auto-immune, don't recognise boundaries!

Thank you again for your help and support - will let you know how I get on in due course.

I hope this reply goes to all who answered my query, I wasn't sure how to do that.

[PMRpro Ambassador in reply to FleetRose]

"I cannot tolerate bisphosphonates"

That is a very sweeping statement - what is your problem with them? There are alternatives,

[FleetRose]

PS Yes I do take calcium, D3, K2 etc. It's useful to know other people have similar symptoms. The books always talk about arms and shoulders but for me, so far, it's always been my legs.

[DorsetLady PMRGCAuk volunteer in reply to FleetRose]

The books perhaps need to be updated - blue [3] shows PMR..

Areas of pmr/gca etc

[FleetRose in reply to DorsetLady]

Thank you DorsetLady I had not seen that diagram. My PMR is still atypical in that the initial extreme pain and changes in sensation also went down my shins and calves into my feet. The cramp in my shins was particularly excruciating. I now have abdominal aches, almost like bladder/period pain. When they say ‘pelvic girdle’ is that just referring to bone structure rather than internal organs? It’s all very confusing.

[DorsetLady PMRGCAuk volunteer in reply to FleetRose]

“Atypical” seemed to be quite common actually when you see how many people on are referred to as that!

…My GCA got the same handle in notes, but in hindsight it was very typical… just that the particular doctor didn’t join the dots…

It’s the muscles in the particular area they refer to, not the bones per se, but as the they surround/support the bones, it can be confusing…

Once your trial re Hashimotos drug is completed think you need an in depth discussion with your Rheumy - you seem to have not progressed much since the beginning of PMR.

[PMRpro Ambassador in reply to FleetRose]

If your PMR is verging on to LVV, it could cause all that. LVV can cause what appears to be PMR but too many doctors seem blissfully unaware of its existence as the joiny-uppy bit between GCA and PMR.

And as DL says - so many people are described as atypical - maybe THEY should be the typical group!!!!

[Body_bonkers]

I was lucky enough not to have any real problems previously so can confidently say the difficulty in walking and climbing due to stiffness/weakness is PMR for me but the steroids only entirely cleared this during first fortnight. Hoping this might be due to my bonkers tapering regime and/or perhaps been 'idle' for too long but time will tell - used to lift/climb ladders for work but PMR has put paid to that for now. Hope you thyroxine trial works - my increased dose was non effective and actually felt a lot better going back to previous dose