Change of treatment

[SRIXON]

Hi all. Been on prednisone since 2017, trying to come of them several times, last time after seeing Rhemy last Sept who didnt feel I had PMR and was keen for me to reduce my intake of Steriods to zero over the coming months. February 2024 at 2mg was in a terrible way neck, shoulders, arms, thighs along with severe fatigue. Early March saw MD, Had bloods taken result back same day 17th March inflmation ESR17 agreed to put Pred up to 6mg. Over the next 2 weeks small improvement but still suffering so upped to 8MG.. 19TH April saw MD again, bloods indicated improvement at 10 ESR. Agreed to continue at this level although of the opinion pred level still requires slight increase. Yesterday saw Rhemy at hospital, he went over my record saw the number of times I have tried to come of prednisone so is instigating new medication with a view on coming of prednisone.

HE IS LOOKING TO GET ME STARTED ON METHOTREXATE .

Has anyone any thoughts on the suggested way forward . Thanks Carl x

[PMRpro Ambassador]

Is this the same doctor all the way through? At least now it is being accepted you have SOMETHING inflammatory that needs management.

There is a lot about the use of methotrexate on the forum and had your title had methotrexate in it you would have got a load of related posts. There is a role for trialing MTX in PMR - it works brilliantly for a very small cohort of patients and allows some reduction of pred dose or reduces flares or simply lets them feel better for many others. However - for quite a few it does nothing at all and for some it can be a very unpleasant experience because of the adverse effects it can cause. I lasted a month before the fatigue was simply too much to bear and the MTX actually introduce effects that are usually blamed on pred! I was constantly hungry and gained weight, a kg in a month!! All disappeared after a month or so, except the weight, that took longer.

There are a few forms of inflammatory arthritis that can present identically to PMR and are missed. If this was the case for you, then MTX may well help you get to a lower dose of pred and even of it altogether. But it may not because it only works that well for about a third of RA patients and it is the first line, gold standard management approach for RA.

[DorsetLady PMRGCAuk volunteer]

All you need to know on MTX - and probably a lot you don't want to know -😏

healthunlocked.com/pmrgcauk...

[random901]

Hi SRIXON! I am currently on 20mg pred for GCAPMR, and about to try MTX next week. Have researched it thoroughly, and pharmacist sister says go for it so happy to give it a go. A better QOL would be welcome 🙂

[CoziNess]

Hi SRIXON, I was a bit worried about taking Methotrexate after I'd heard some negative stories, however, it has worked for me so far.

I kept relapsing and struggled to reduce my dose of prednisolone. I'm now at 4mg which is amazing, but struggling again, so will try Tocilizumab instead. I'm not sure if they give that to PMR at the moment though.

I do hope you get help as that's a long time to have coped with Pred without extra help. Best of luck xx

[DorsetLady PMRGCAuk volunteer in reply to CoziNess]

You won’t get TCZ for PMR in UK…. and at 4mg are you struggling with PMR or adrenals?

[PMRpro Ambassador in reply to CoziNess]

Certainly don't give tocilizumab for PMR in the UK, at any stage, and if you are at 4mg no good doctor would offer it without very good reason, The main problem at that level is the return of adrenal function.

[CoziNess in reply to PMRpro]

I do have other things going on which the Methotrexate isn't sorting... Chest/heart/breathing issues and I have LVV. Undergoing tests at the moment.

[PMRpro Ambassador in reply to CoziNess]

Have the chest and breathing issues started since the MTX or were they there before? MTX can have lung adverse effects so I hope they checked that out before assuming it is heart.

[CoziNess in reply to PMRpro]

Ever since my first relapse I've had chest symptoms, later turning to breathing problems. That's why the rheumy put me on Methotrexate. It helped, but now it's not. I've had basic chest x-rays before and they found nothing. It's only when I do too much that it comes on. It's not there all the time.

[PMRpro Ambassador in reply to CoziNess]

What tests are they doing for the cardiac option?

[CoziNess in reply to PMRpro]

They're starting with a CT Angiogram and may proceed to Cardiac angiogram later. Rheumy sent me to a cardiologist for that. I'm a bit in the dark about why, but they did say I could have had Takayasu's. Certainly, my hypertension (began in early 20s) disappeared as soon as I was put on Prednisolone! It seems I'm not your normal punter.... But then it is a syndrome, so they say.?

[PMRpro Ambassador in reply to CoziNess]

Meaning? You said in your first post that you had been fit and healthy before the PMR/GCA symptoms appeared. Do you mind me asking how old you are?

[CoziNess in reply to PMRpro]

Haha, I'm 62. Having high blood pressure was normal to me. They only investigated the cause when I had a nasty case of pre eclampsia in my 30s, but didn't find anything... Though they didn't do a renal angiogram... I'm glad to say.

[PMRpro Ambassador in reply to CoziNess]

I had pre-eclampsia in my late 20s but BP went back to normal afterwards. My other daughter has hypertension - but has had no pregnancies! I do wonder how many patients with GCA/LVV really could have Takayasu's but they are often adamant you have to be under 50 and preferably Asian (which isn't true). One lady had TA as diagnosis but after her 50th birthday noticed it had been changed! Which wouldn't have been so bad were it not that TA gets tocilizumab unlimited, GCA and LVV don't!

[CoziNess in reply to PMRpro]

That is very interesting indeed. Maybe in years to come they will eventually put two and two together. Maybe we should be telling them these things!

[PMRpro Ambassador in reply to CoziNess]

Oh I do tell people - but it needs money for the study and you need a study to change anything ...

[CoziNess in reply to PMRpro]

Well it's been wonderful to realise it's not just me! I've felt like they're not believing me. They still have on my records 'possible GCA' and 'atypical'. Even though I have most of the symptoms of GCA, but without a positive temporal artery biopsy. It's got me quite down.

[DorsetLady PMRGCAuk volunteer in reply to CoziNess]

I’ve decided over that years the phrase ‘atypical’ is bandied about too freely- usually means the physician missed the diagnosis [for whatever reason] so the patient must be to blame…🤦🏻‍♀️..

cynical maybe 😊

[PMRpro Ambassador in reply to DorsetLady]

It's their get-out clause ...

[Smithie49]

Hi . I've been on pred 3 yrs and am currently on 7.5 mg which just about holds PMR at bay. I was started on methotrexate end of Dec 2023 and was extremely anxious about the side effects. The rheumy upped my folic acid to counter very mild nausea and extreme fatigue so now no unpleasantness but no difference in my PMR symptoms. Early days maybe? Good luck

[Judywalks]

I took MTX for a number of years along with Pred. I was also prescribed Folic acid and Alendrolic Acid? Taking the MTX itself was ok but the side affects were not good for me. My immune system was lowered and I was left with recurrent UTI’S and soft bones. The thing I reacted to the most was the Alendronic Acid and eventually the Dr agreed to me stopping it. I took vitD3/and calcium. I advise to read the article recommended by Dorset Lady