Just reading this mornings posts - what is MXT ??

[RodRea]

My diagnosis was in Oct 23. Am now on 2nd round of steroids. Currently at 10mg of pred with a 50% reduction of symptoms. I have spoken to my gp about going higher and coming down slower but he does not agree.I was originally on 30mg for a week then 20mg for a week as prescribed by rheumy. My pain is all in my legs - hips and knees complicated by arthritis in my right hip. I found an article today that originates from the U.S. which says a drug call Kevzara has been developed for PMR.

Anyone heard of it?

[DorsetLady PMRGCAuk volunteer]

MTX is methotrexate - used in UK as a steroid sparer in PMR/GCA - but also used on it’s own for RA.

Oodles of info in the FAQs about it..

healthunlocked.com/pmrgcauk...

..and yes Kevzara or Sarilumab is used in US for PMR as well as GCA - but not as yet in UK.

If you type Kevzara into search facility you may bring up related posts -this is just one … but mostly from US patients-]

healthunlocked.com/pmrgcauk...

Have to say I think your issues lay with your GP, he doesn’t seem to have a very good understanding of PMR.. and you probably do require higher, certainly 15mg , maybe 20mg for a short while..

Do you still have access to Rheumy - a helpline maybe? After all they are the experts - so why is GP making decisions on doses?

[RodRea in reply to DorsetLady]

Thanks for all the info!

[Charlie1boy]

Hi,

I have to agree with your statement about going higher and coming down slower.

I was left at 30mg for over three weeks to get the built up inflammation under control, then carefully down from there, and never reducing if I felt any symptoms.

Don’t think your GP is doing you any favours!

[RodRea in reply to Charlie1boy]

Thank you may have to persist with GP or alternatuve route.

[PMRpro Ambassador]

Look for another GP who knows what they are doing. If you were diagnosed in October, you should still be slowly tapering the dose to identify your Lowest Effective Dose for the first time. You start with a dose that is too high and then slowly reduce - emphasis on slowly - in small steps to find the right dose for you. You don't relentlessly head for zero, which is what your GP seems to think,

This a reasonable outline of tapering but the caveat that the taper must be adjusted for the individual patient MUST be adhered to.

rcpe.ac.uk/sites/default/fi...

The author is now Professor Vanessa Quick and a member of the PMRGCAuk charity - and she still uses that approach because it works.

Don't hold your breath on Kevzara being approved in the UK - too many doctors are stuck in pre-history!!!!

[RodRea in reply to PMRpro]

Thank you - its useful to know who the author of the slow tapering is - will give me somethin evidence based

[PMRpro Ambassador in reply to RodRea]

Her boss, Prof John Kirwan , was the UK's top PMR expert in his day and years ahead of his time. PMR's answer to GCA's Prof Baskhar Dasgupta! Both retired now but have forgotten more about PMR/GCA than most doctors ever knew!

[PMRpro Ambassador in reply to PMRpro]

And the slowed tapers we talk about here, even slower than that, are approved by Prof Sarah Mackie and have been used by here in clinical studies. They work - hundreds of members would attest to that.

[Telian in reply to PMRpro]

I too can attest to the very slow tapers and yes Prof Sarah Mackie insists I do. 🌺

[DorsetLady PMRGCAuk volunteer in reply to RodRea]

PMRpro has replied - there are a variety of different ones -but all based on the original aim.

Have a look here -

healthunlocked.com/pmrgcauk...

[Sophiestree in reply to RodRea]

my consultant wants me to taper by 0.5 mg over 2 months....

[Myfoe]

I have been on Kevzara for 8-months it has really been helping last 3 months I have had several days where I feel “normal” again lately I can start and finish a project but PMR slips back in 3 days before my next injection but hopefully that quits as well

[RodRea in reply to Myfoe]

Thanks for the info - are u in the uk? I was not sure if its available over here.

[Myfoe in reply to RodRea]

I am in USA I don’t think it’s been approved in your neck of the woods yet or maybe under a different name… I don’t want to jinx myself but wow what a turn around for me so far

[DorsetLady PMRGCAuk volunteer in reply to RodRea]

As stated, Kevzara is not available in UK -at present ..

[Darkchocolate1]

I live in the US and I took Kevzara for 3 months. I felt great on it my PMR pain was controlled. I was able to taper down prednisone from 10 mg to 7 mg easily. Unfortunately I developed skin rashes, peeling skin and a squamous cell skin cancer popped up on my the back of my hand. I had MOHS surgery and it is now healed. My rheumatologist wants me to try it again but I am reluctant to do so. The drug worked so well for me and doesn’t cause these problems for most people.

[RodRea in reply to Darkchocolate1]

Thank you for info - sounds like you had very dramatic reaction and I can understand your reluctance to go back on it.