New to this

[Maz55]

Hi am Mary live in St Helen's, work in the NHS, feel I am constantly struggling with PMR and can relate to so many people on here

[PMRpro Ambassador]

Hi and welcome - what do you do in the NHS? Having to work does tend to make things more of a struggle!

[Maz55 in reply to PMRpro]

Fortunately I am doing a desk job now, in commissioning and working from home, I just wish I could turn the clock back 18 months, this is such a dreadful and debilitating disease

[PMRpro Ambassador in reply to Maz55]

OTOH - at least now you are 18 months through it!

What are your problems? Tell us about your tapering, activities and so on and maybe someone can help with some suggestions.

[Maz55 in reply to PMRpro]

Still struggling with pain/stiffness in lower back and hips just cant seem to see an end to this, my quality of life has changed totally, and then having the heart attack in Dec, and then heart infection in Feb, wonder what life is all about at the minute.

[piglette in reply to Maz55]

PMR is a life changer and we just have to smile and accept it sadly.

[Maz55 in reply to piglette]

I am beginning to realise that

[jinasc]

I am wondering if I have read your profile correctly -

"had temporal arthritis in feb 2019, had every side effect to steroids that a quicker reduction was done, to my detriment, july 2019 diagnosed with PMR".

Did you start on a high dose of pred and then when you reduced (to whatever dose) the PMR pains came along?

[Maz55 in reply to jinasc]

Yes started on 45mg in feb and had a biobsy done also, by July I was off the steroids and had no symptoms. Within a month started with the pains and stiffness and diagnosed with PMR started on 12.5mg but each time i have had an acute episode of illness they have doubled the dose but titrated down, I was on 5mg in April and was the best ever but had a flare up and now I 8mg but still having pain and stiffness now feeling breathless again

[DorsetLady PMRGCAuk volunteer in reply to Maz55]

Unfortunately you’ve been reduced too quickly by your medical team. They’ve obviously done it with the best of intentions because of your other health issues, but maybe don’t understand GCA and PMR as well as could be expected. Plus as PMRpro says working doesn’t make things any easier.

Maybe have a read of attached so at least you understand what’s going on - and then lead them in the right direction in your treatment - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Maz55]

I absolutely agree with DorsetLady - far too fast a reduction.

We were reading a statement in another thread about the use of tocilizumab (TCZ) in GCA where the author says "no-one can taper off pred without TCZ" which is utter tripe in the real world. Of course people can taper of pred, successfully and without flares IF it is gone about the right way. And as soon as they start to rush, flares are created and they panic and increase the dose again, often to far higher than need be. The old fashioned doctors who only had pred to work with to save sight and lives knew that the primary cause of a flare is reducing too far and too fast and that the worst thing they could do for their patient was get into a yoyo pattern with the dose. You have had both.

Yes, pred has side effects - but most can be mitigated when you know how. Just most doctors don't know how ...

[Maz55 in reply to PMRpro]

I am under Rheumatology but dont see them as often as I would like and yes I have gone up and down on the steroids but mainly due to having acute episode of illness, but this flare up is not settling, the side effects of the steroids I am having are sleeplessness, awful flushing, hair loss, cushingoid effect, leg cramps, to name a few, and while I always pride myself as being a strong person I feel this is beginning to affect me mentally now because of how I am looking and feeling physically if that makes sense

[PMRpro Ambassador in reply to Maz55]

Cramps - try magnesium supplements. Pred increases the loss of magnesium (and other things) through the kidneys. That has worked for a lot of people on the forums and is the first approach here in German-speaking mainland Europe.

I became Cushingoid when on methyl prednisolone for PMR - I was switched to prednisone and cut carbs drastically. In 18 months I lost 35lbs of PMR and pred associated weight - stopped looking Cushingoid (which is natural enough on GCA doses) and even the doctors say there is no sign I am on steroids. The fat went first from around my midriff and then from face and neck.

Believe me - both PMR and GCA can lead to the flushing, it isn't always pred. GCA will also do damage to your hair and it WILL get better as you reduce the dose. But if you are worried about hair - it was methotrexate that did that to me. shortly after the first dose my hair came out in clumps despite folic acid.

But to be honest - above all, maybe you need to look at the fact you are still expecting to continue working as normal. This is a new normal I'm afraid. I was much younger than you when PMR struck and I could only continue working because I was a freelance translator and only had to get from bed to desk!

[Maz55 in reply to PMRpro]

I am only working 3 days and from home so it's not a regimented routine, no travel and lots of breaks, so not all bad

[PMRpro Ambassador in reply to Maz55]

Is that just Covid-related home working or can you continue with that?

[Maz55 in reply to PMRpro]

Hoping to continue but will have to see how things go

[yorkieme in reply to Maz55]

Hi,I am six months into my new education about life with PMR,(not yet certain in my case,) but thanks to Pred' I can relate to how you feel about the side effects.

I started on 15mg(PMR) and increased to 60mg (suspected GCA,)and have gradually reduced,along the way came insomnia,cushingoid effect,weight gain,cramps,oral thrush and laboured breathing.

Having being very active/reasonably fit I refused to accept that I couldn't carry on that way.I got it wrong. Wrong because I didn't understand the illness and wrong because taking on all of the above was utter madness.

I found this forum and the kind people on here and now,slowly,starting to get the little bits right.

Break it down,look at what you can achieve piece by piece and be very very kind to yourself. I beat myself up,or did,because of my failure to do a long walk,get the housework done in one go,couldn't dig up the turf etc,etc,but now I am learning thanks to advice on here.

Still have the dark thoughts about my future,but at least more ballanced with good ones. Chin up,looks like we're in the same class at school.lol.

[Maz55 in reply to yorkieme]

Aw thanks so much it's such a horrible illness but am so glad I found this forum

[Maz55 in reply to PMRpro]

Unfortunately a lot of GPs tend to leave this to secondary care as they are unsure about regimes etc

[PMRpro Ambassador in reply to Maz55]

An awful lot of GPs think they know about PMR - and get it wrong. But GCA - belongs in the hands of a sensible rheumy. Unfortunately there are a lot of them who aren't any better than GPs ...

[tangocharlie]

Interesting in Dr Dasgupta's talk for PMRGCAuk last week he said he ALWAYS keeps his patients on a low dose of Pred eg 2-3 and doesn't entirely taper off