Recovery from PMR

[F-Lulu]

Hello everyone. Two issues to share. I developed pmr 24 years ago when I was 50 . I never took steroids but took ibuprofen for the pain and to get me through the working day. After two years the condition burnt out and I recovered completely.

Fast forward to Christmas Eve 2021 when I ended up in Emergency with the full range of GCA symptoms…and started on the usual cocktail of drugs including 60mg of Prednisolone. Have tapered so far to 5mg with only minor setbacks- including significant hair loss, which led to my rheumatologist advising me to stop taking Alendronic Acid.

Fingers crossed for a steroid free 2023!

[DorsetLady PMRGCAuk volunteer]

Fingers crossed for you.

Let’s hope your GCA journey is as easy as your PMR appeared to be.

Have you tried folic acid for your hair -AA is not usually mentioned as the culprit for hair loss.

Maybe have a look a this link from FAQs on all things hair related -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to DorsetLady]

One site lists hair loss under common side effects - but at the same time replies to a patient query that it is associated with AA but isn't common!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

hmm...sounds about right!

[SnazzyD]

Hello, my hair fell out to varying degrees and grew back several times over my GCA journey. No idea why but physical stress of systemic illness is a common reason. My worst times were 5 months after diagnosis and during a low adrenal function phase at the end. Do be careful with the steroid reduction. GCA is a very different ballgame to PMR and can occur because of PMR. Yes, it’s less painful overall but the complications are more serious. You may be one of the lucky ones who zip through it though.

[F-Lulu in reply to SnazzyD]

Was referred to a dermatologist for the hair loss- she was very helpful and confirmed that it was generally the outcome of what she described as ‘trauma’ to the body. She meant a combination of the illness and the drugs causing the body to respond by prioritising recovery of the immune system - and a healthy head of hair being low down on the list of priorities!

However I did invest in a wig- so find the continual shedding of hair slightly less distressing. I never thought of myself as vain but I guess I took it for granted that I would retain a reasonable amount of hair…and, by the way, I really like the wig !

[DorsetLady PMRGCAuk volunteer in reply to F-Lulu]

Hair loss more likely due to illness -my mother was a hairdresser for many years -and always knew when her clients had been ill without them telling her.

Takes about 5-6 months to see the effect of what’s going on inside your body on your hair.

[MrsNails in reply to F-Lulu]

Hi - l hope your GCA journey is straightforward & things improve for you soon.

My hair was thinned by Prednisolone & Methotrexate however l lost it all with Chemotherapy, it has never recovered but l wear a wig & have settled into wearing it/them no problem 💁🏻

Good Luck 🍀

[PMRpro Ambassador]

Fingers crossed indeed!

[F-Lulu]

Thank you everyone for your kind and helpful comments…

[Whist]

I was on prednisolone for 3 years with highest dose 15mgms Reducing was extremely difficult and eventually stopping from half a MGM I was in extreme pain for about 3 months but there was no other way I am now borderline diabetic and cataract in one eye all from prednisolone .I have also developed anxiety which I believe is connected to the prednisolone use The pharmacist said there were a few cases she knew of where this happened and the GP said prednisolone could you make euphoric I know you have no choice with GCA and prednisolone use but if you can get it off as soon as possible..Good luck

J5

[PMRpro Ambassador in reply to Whist]

It is very likely that you were hatching both and the pred speeded it up. Pred-induced diabetes is only while you are taking it, it isn't the same as Type 2 diabetes and it is possible to reverse it with a bit of application. Koalajane did.

[JMT_hiker]

Two years of PMR with no prednisone; you're one tough person. My hat goes off to you.

[F-Lulu in reply to JMT_hiker]

No- not tough at all! I often think that I was very lucky to have a less severe version of PMR than other sufferers I have come across.

[PMRpro Ambassador in reply to JMT_hiker]

I got through 5 years of PMR no pred - never want to go back there!

[JMT_hiker in reply to PMRpro]

That's insane; why didn't they diagnose the problem and prescribe pred if you don't mind me asking?

[PMRpro Ambassador in reply to JMT_hiker]

Because the GP didn't recognise it, my blood markers were never outside normal range, I was only 51 when it started so "young". He actually said once "the bloods are normal, can't be anything wrong". And then you get into the somatism, "all in your head" world. I was referred to a rheumy about hand pain - she announced I had OA in my hands and knees causing the knee pain - 13 years later an x-ray done here for similar pain showed no sign of OA at all. I have pain in my hands now that is very likely OA that has emerged with lower pred doses but it is very different from the PMR pain back then. Apart from that it was textbook PMR and the pain was relieved in less than 6 hours after taking 15mg pred.

[JMT_hiker in reply to PMRpro]

Oh my goodness; what a journey you've had. This inspires me to persevere.

[Blacksley]

You seem to be doing ok and long may that continue. Although I have had PMR for 4 years I do not have GCA. My experience is like that of many in that they we told by medics to reduce their intake of prednisolone by TOO much TOO quickly leading to repeated flare-ups (8 or 9 in my case). Since joining the forum earlier this year I have now chosen to ignore the medics ( I have never been referred to a Rheumatologist but again judging by the experience of many they often seem as ignorant on how to treat this condition as GP'S) and followed the advice of many contributors to reduce my intake by only small amounts and slowly. Thus far I am ok and am now down to 7.5mg from 27.5mg with no flare-ups. I also have multiple issues due to Long Covid since July with no apparent effect on my PMR. I have also with the GREAT help of my local local authority leisure centre, initiated my own rehab programme to help me cope with Long Covid. Hope that my experience may be of interest to you and others.

[Barbaracole]

Hello there , you have been very strong ; I resisted Alendronic Acid for a long time. I then buckled when a consultant told me simply do you want a long life or not. He convinced me that my bone density was very low , and likely i would fall break my femur and bingo pnemonia, and that would be it. So I gave in to an infusuion . That has been so far no hair loss; i think my bone density has improved but I also go to T 'ai chi once a week I am sure that has been a big help . I do hope things get better for you , I just try to manage been on streoids now for 4 years . All the very best.!