D day tomorrow, I start my course of Methotrexate, my pred is down to 40 mg and go on to 10mg of Meth once a week. Meeting with the rheumatoid nurse today convinced me enough that the new treatment is a positive alternative for the next 13 weeks, I hope so my quality of life is not good and very depressing.
Methotrexate: D day tomorrow, I start my course of... - PMRGCAuk
Methotrexate
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Doublef
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Three weeks ago you had a GCA flare which was confirmed by A&E. I do not understand why you saw a Rheumatology nurse and not the Rheumatologist. I also feel worried about the Methotrexate which is by no means a solution for a lot of patients. I am not even sure it would be working in 13 weeks. If this is the standard of your current care ( under medicating to the point of a flare) and not seeing the consultant after a serious flare. I would be urgently seeking another Rheumatologist. I am not surprised that you feel the quality of your life is not good. Being rushed off Prednisalone has already had the predictable result - it doesn’t sound as if this is being addressed by your Rheumatologist. I am sorry and concerned for you.
I did see the rheumatologist after A&E who recommended Methotrexate today was to meet the nurse looking after me for the next few weeks they both feel that due to my health that is the way to reducing one whilst increasing the other. and after discussion decided to continue.
in the UK the chance of getting another Rheumatologist would be impossible anyway
That makes sense re the nurse.
I did change my Rheumatologist and fortunately got Dr Mackie (Leeds) upon a recommendation by PMRPro and I have never looked back, but this was pre-pandemic and things were easier. I sincerely hope that you are one of the lucky ones with Methotrexate. My own Rheumatologist said that ask any Rheumatologist and they would say that they would prefer to be on Methotrexate rather than Prednisalone. The potential side effects put me off. Keep us posted!
Thank you yes the concern seems to be the long term effects of Pred.
Which I would say are greatly over-egged! And MTX isn't the mildest of drugs if it doesn't suit you!
Im new to all this and can only be guided by the professionals for the solution.
It is also possible to read for yourself and ask how others got on with pred or with MTX. That is what we do here. And we do talk to doctors about it too.
DorsetLadyPMRGCAuk volunteer
Let’s hope it helps, but MTX does take some time to work [and as said not for everyone] so give it time - and fingers crossed. Please keep us informed on how you get on.
Good luck. My Rheumatologist told me that methotrexate had revolutionised the treatment of rheumatic diseases and where once you often saw people in wheelchairs that is rare now because of methotrexate. 👍
I'm sure he did - but actually that is for inflammatory arthritis where it reduces the damage done to the joints with the DMARD effect, disease modifying antirheumatic drug, and it is why you rarely see the deformed joints that were so common. However - PMR/GCA is NOT an inflammatory arthritis and the role of MTX is more to potentiate the effect of pred to increase the antiinflammatory effect. Unfortunately, that can also potentiate any of the other pred adverse effects. MTX did that for me - I suddenly was ravenously hungry and gained 1kg in a month, and I had other adverse effects normally blamed on pred which I had never had before together with overwhelming fatigue. MTX does work brilliantly for a small cohort of PMR patients - possibly because they were misdiagnosed but GCA is definitely a vasculitis and unlikely to be confused with RA at any stage.
Yes I experienced so much exhaustion with MTX i could hardly function and the rheumatologist said he had never heard of that side effect !!!! Really !!! I am worried that I might be affected by reading potential side effects. I only managed a month. I am now about to start leflunomide once I have had my covid jab and am nervous but was encouraged by your experience. Each one of us is different. My gp said yes leflunomide is a serious drug but less dangerous than steroids is that right ? Again possibly not for everyone.
Really??? Send him to me!!! And yes - definitely it is a personal thing, many people need pred at moderate doses for a very long time and do fine. Actemra has sent my cholesterol far higher than pred ever did, my bone density hardly budged in 12 years or so on pred. There are ways of dealing with those aspects - whether that is a good thing or not is also a good question.
Leflunomide scares the socks off me which is a totally unreasonable reaction but it works well for Lorna so I even offered to my rheumy to try it when I was stuck in the upper teens. But he just cut to the chase and said no, we'll use what I know works, here's your script for Ro-Actemra! Because he can. It does mean I can't return to the UK permanently yet. Maybe a very mixed blessing but a very good excuse!
I'll let you know how I get on - i sm trying to be open minded. It is the fact that if it goes wrong you have to be " washed out" that puts me off. I hope that Actemra will be approved for polymyalgia eventually. Are you up near Bolzano - I love it. Used to ski very badly at ortizei where they speak German and Ladin. Very interesting.
I live near Kronplatz, Corvara is a bit further up the valley, it is the next stop along on the Sella Ronda from Wolkenstein/Selva. We started skiing in Canazei, very italian, moved around to St Christina, over to Colfusco and live outside the "ring". Life within that area stops at this time of year! Not very practical to live there permanently.
I suspect the trick is to start low and build up and be very aware of what can happen. Just stopping does seem to deal with many problems though without the washout.
I love it. If i had the funds i would choose to live up there it is wonderful.in the summer too but just foggy and wet now. I like to look at the webcam on secceda. My ex was a black runner so.me being a poor skier and scared on big slopes was not a good combo😅 Still the Welsh borders are wonderful too.
Seceda is where I broke my leg!!!! Haven't been back since though that is coincidence. St Ulrich was off our beaten track really. I was born and brought up in the Welsh Borders - um, no contest, too wet ...
Ouch , that is why i was always a bit scared when skìng. Welsh Marches are too wet and very piratey. Mad here in Hay, worse up in Bishops castle etc but hilarious.
Just realised what you said about "just foggy and wet now". We have the first rain yesterday/today for weeks, it is lifting the yellow warning for forest fires that has been in operation for weeks. We have had late summer weather until this week with not a cloud in the sky. Getting the edge of a Mediterranean low pressure today - windy but not particularly cold for the end of October, just no sun which makes it not very comfortable when you have been used to around 20C and sun! And that is at altitude - much warmer in the low valleys around Bozen.
I'm on my second week with methotrexate and so far no side effects. Started on 10mg for 2 week then 15mg for 2 weeks then upto 20mg. I'm talking it on a night before bed which is working.
I started with MTX last year at 10 mg. I was so fearful but it was the pharmacist at Boots who counselled and reassured me and she was right in my case. It mitigated the PMR pain dramatically for me. I’m now at 20mg. I have no side effects, but I do get very tired for the following two days. Drinking lots of water helps and taking folic acid for six days with the exception of MTX day. More experienced folk will assist you further. Take care 🍀🍀
Good luck! My Rheumatologist just started me on Kevzara. FDA approved for PMR in U.S so hopeful. Diagnosed with PMR in August 2022. Prednisone and Hydroxychloroquine up to this point. My Rheumatologist feels Methotrexate is the clear choice for RA but is hit and miss for PMR.
Can I ask why have been recommended to take methotrexate? Is it because the prednisone is not working how it should?
More than once it has been said that Pred pre is just masking the GCA and they are getting some positive results from Meth and my quality of life is poor and hope it works I hope so
It’s true that Pred is only working on the inflammation caused by your GCA -but as the inflammation is what is doing the damage and causing your pain it’s most certainly helping you.
As we always say it isn’t working on the GCA as such -that will go into remission in time, the Pred (or any other drug) is only controlling part of the disease.
yes hopefully I'm ione one of those it does work on
It still won't CURE the GCA though.
i just want my quality of life to improve
So do most of us - you aren't alone there.
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