Latest consensus on Methotrexate

[arvine]

as ive posted just started metho injections, 3rd one 20 mgs thos coming Friday. Now I am reading a lot if negativity on this drug, even people refusing it, For those who have this view would like to know why, as well what comditions were you prescribed this drug, also for those of you that have been taking it, and have positive results, again for what condition wad prescribed , than k you

[PMRpro Ambassador]

The main negativity you will find here is that it isn't guaranteed to have a real effect in helping to reduce the need for pred in PMR. It can also have side effects. But not everyone has side effects and it sometimes DOES have a brilliant result in PMR but you have to try it to find out if it works for you and whether you will have the side effects.

It may work in PMR, it has recently been found to have a beneficial effect in osteoarthritis and it is the first line for inflammatory arthritis. So your rheumy's desire to use it for you is actually covering 3 different possibilities which seem very likely in your case.

You cannot continue to yoyo on the dose of pred as you have been for some considerable time now. You have asked the same questions again and again on the forum and we have answered them - the answers aren't going to change. When you put up a post, the site gives you 10 Related Posts which will almost always provide the information you are asking for when it comes to methotrexate, I suggest you have a look at them and then continue to take the MTX and see how you get on.

[arvine in reply to PMRpro]

Thank Pmr, but really only went to 40 mgs on rheumy s advice Dec 2022, possible GCA which tested negative, then this year took extra 5 mgs for 3 days, to help with excruuciating pain for MRI, just to clarify, thx again

[Frewen1 in reply to PMRpro]

I’m just about to start MTX as steroid sparer for the second time - Leflunomide was making my hair fall out hugely, and increasing blood pressure, etc etc. Had my year of TCZ. The fact I couldn’t remember anything particularly bad about Methotrexate first time around would imply it wasn’t too bad. We’ll see.

[PMRpro Ambassador in reply to Frewen1]

No hair problems with MTX? That's less common with LEF usually.

[Frewen1 in reply to PMRpro]

Ah….well, who knows? I did notice some loss ( usually ascribing anything negative to Pred… except saving my sight, of course…) but it certainly got more pronounced in the 9 months I’ve done Leflunomide. Probably , after four and a half years of this snakes and ladders caper, it’s time I started a diary!? x

[PMRpro Ambassador in reply to Frewen1]

Makes comparing what worked and what didn't easier ...

[Rynn33]

I understand that some people have strong side effects from taking MTX but that was not my experience on 15-20mg. For the first month I was nauseous and then it settled for the year I took it.

However while it initially helped me get from 5 to 3.5 mg(as I thought) I ended up back at 5mg. So it only seems to work for a fraction of people as a steroid sparer to help them get off Pred. Aside-I realise 5mg is a low ish dose anyway but Rheumy keen to lower further.

I’m now on Roactemra for last 3 weeks and hoping it’s a better fit. l think I’m lucky to get it for just PMR based on reading other stories and will be given it for more than 1 year That seems to be the protocol in Ireland now. It seems I had to try MTX and be unsuccessful to get access to it.

So hopefully MTX works for you but it will take a while to know.

[PMRpro Ambassador in reply to Rynn33]

I hope the RoActemra does get you off pred - but even it isn't guaranteed. It is known there are at least 3 different mechanisms for the inflammation in GCA and it is unlikely it is any different for PMR - Actemra only works for one of them. If one of the others is involved in YOUR PMR, as it is in mine, you will continue to require some pred. That is the case for half of patients - half get off pred with Actemra, half need to continue with pred for this other inflammation.

I have been on Actemra for over 2 1/2 years and still need 7mg pred - at 6mg the bicep tendinitis returns within a few weeks and I can't use my hands and forearms without pain. I started Actemra because I was stuck at nearly 20mg pred for PMR (after 13 years on pred) - had I already been at 5mg, neither my rheumy nor I would have agreed. If you are trying it - I hope at least pred can be stopped! But it too is just a steroid-sparer, a very expensive one!! And can have adverse effects too.

[Rynn33 in reply to PMRpro]

Thanks for the insights- I seem to have less fatigue on it but it’s early days. I agree 5 mg is not that much but for me it still has some side effects so I’m open to trying.

[WaltzG]

Hi I have GCA and PMR and due to inability to take steriods have been treated with methotrexate and the one permitted year of Actemra . MTX has some nasty side affects and knocks me out for one day a week (after I take it) but its done the trick and has enabled me to return to an active life. So so far so good 👍

[Ginntonic]

In about 1995 I started to suffer from Psoriatic arthritis in my hands, so bad I couldn’t shake hands with anyone (I was working then).

I was subsequently offered methotrexate to deal with this. I had to have a very complete medical beforehand and told I would need a blood test every two weeks and would have to be very careful because it can make you very vulnerable from infections etc as it knocks out your immune system.

At that time (now too) we were travelling a lot, my son lives in Brisbane, and when I mentioned this it was clear that travel would be a problem. It was at that point I refused it. They were not happy.

My hands eventually cleared up but then flared again 18 months ago and again I was offered it and refused.

My PMR started in July when I was referred back to the reumy over it she said that it wouldn’t have happened if I had been on methotrexate! (This I doubt but I am happy with my refusing it.)

[arvine in reply to Ginntonic]

oh dear, well I just started on meth injections which I give myself, suppose to help chronuc pain from possibky 3 kinds o f arthritis including inflammatory and psoraitic, gave myself 3rd injection just Friday past, hands fingers very painful but other joints as well, and still on 4 mgs pred(originally diagosed with PMR Oct 2016 started on 40 mgs then) , I was very hesitant to start this med, so many different opinions and experiences Ive heard on this forum, but rheumy said nothing else he could suggest( which now Ive read are other meds) I too had lung xray, and booked for firstvbloodwork this coming tuesday, he also said can take 3-6 mos to see if helps with pain or tapering pred more, only been over 2?weeks now since started, havent noticed any relief yet of course, but your story adds to my skepticism about this drug, next 4 injecyions are each 20 mgs, but was graspingvatvstraws for some pain relief , can only take tylenol which doesnt seem to help much