No steriods,methotrexate only

[WaltzG]

wordering if anyone else has had my experience I am diagnosed GCA and PMR didn't take steriods except one injection at beginning (2 years ago)been on methotrexate for 6 months bought Markers down to normal now about to start tcz.

[Siena62]

That seems to be an unusual protocol. What happened between your steroid injection at the beginning and you going on Methotrexate six months ago? What did you take in the 18 months between? And why are you starting TCZ now?

I have heard of people starting on both steroids at Methotrexate right from the beginning but this doesn't seem to be common in the UK.

Most people need immediate relief when they are diagnosed and can't wait for Methotrexate alone to take effect. I know that I couldn't wait one more day.

[WaltzG in reply to Siena62]

although very painful at onset started after covid vaccine and was assumed by Dr to be side effects which would wear off after 12 weeks . .by time they decided to see me the pain and stiffness was tolerable....tho markers sky high. Then wanted to give me steriods and I refused cos knew would affect my epilepsy medication....eventually had steriod injections to test my response which was bad didn't help and made me very weird. Some time later was diagnosed with GCA as well so was put on methotrexate and soon will be on tcz.

[PMRpro Ambassador]

Seems a bit cock-eyed since TCZ is restricted in the UK to for relapsing GCA and even then you have to jump through hoops. And it is agreed that methotrexate has little role in GCA - and certainly wouldn't/shouldn't be relied on at the outset to avoid visual loss.

Have they maybe changed your diagnosis to inflammatory arthritis?

[WaltzG]

Hi its not been changed i am under a hospital clinic ...it was recognised that can't tolerate steriods.. however should I get any symptoms of GCA sight loss I would have to go on steriods notwithstanding. The methotrexate was experimental but has worked well in bringing down markers completely.

[PMRpro Ambassador in reply to WaltzG]

That's interesting - something to remember because we have had others on the forum unable to tolerate steroids but no-one suggested TCZ was an option for them. But it is also interesting that this is after Covid vaccine. We have noticed that there are people whose PMR started post the vaccine and Covid itself and which have resolved quickly compared with the usual pattern,

[WaltzG in reply to PMRpro]

interesting that has manifested differently for others post vaccine/covid. My severe symptoms only lasted week or so ie inability to move much and severe stiffness.....and reaction to methotrexate so quickly ie immediate drop in markers not seen by rheumi before tho he put it down to not being mixed with steriod intake!

[Flivoless in reply to PMRpro]

Hmm, your comment "PMR started post the vaccine and Covid itself and which have resolved quickly compared with the usual pattern" is very interesting and I'm wondering whether I fit into that category. Succumbed to PMR April 21, some three weeks after first Covid jab. Started at 15mg Pred, had to up to 25 now down to 6mg a week ago. A few days of taking 25mg all pain was gone and no pain since, well not PMR pain. So, I'm now wondering whether the PMR was short lived (or whether I actually had it at all and it was something else?). Not brave (or silly) enough to put it to the test mind. I'll keep tapering slooowly.

[PMRpro Ambassador in reply to Flivoless]

The trouble is you never really know as there are no definitive tests - it is what we need above all, even more than a better drug than pred. Apart from anything else - until you know exactly what you are dealing with, you can't search for the right drug. Methotrexate works for some, leflunomide for others, pred works for almost everyone - and even Actemra doesn't work 100% for everyone and isn't a cure anyway.

[PMR2011]

How were you diagnosed with GCA? Symptoms only or US or biopsy?

[WaltzG in reply to PMR2011]

Hi I had a ct pet scan. I haven't had any symptoms

[PMR2011]

I’d want to know whatever I was taking is working even if the markers drop. I’ve never heard of treating GCA with just methotrexate. Where you haven’t had the usual symptoms it makes it much more difficult to know if meds are working. I’ve been on TCZ for 3 years now. Completely off Pred and feel great.

[WaltzG in reply to PMR2011]

So glad to hear .... the methotrexate was to fill the gap until got the tcz. I also have a supply of steriods to take if had any symptoms of GCA cranially. Tcz starts next week so hopefully won't need to take ! Under an NHS clinic and can get quick advice if any headache etc. Far less pain on methotrexate generally......