Methotrexate: Just seen my rheumatologist andhe is... - PMRGCAuk

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Methotrexate

Ryliefew123dogcat profile image

Just seen my rheumatologist andhe is suggesting l try Methotrexate as l am having a lot of trouble tapering from 20mgs of prednisone. I would like to get your opinion on it. He says l would have to take it 1 day a week. Has anyone on this forum had dealing with it and what are the side affects?.Should l try it or not.? I would be very grateful to some advice.

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Ryliefew123dogcat
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jinasc profile image
jinasc

I see from you profile you have GCA. You do not when you were diagnosed, or if you did I have missed it.

Follow this link and read a leading experts opinion and he also is the Patron and Founder of PMR GCA UK.

healthunlocked.com/pmrgcauk...

10. In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect. Leflunomide, based on open case experience, is often more effective as a steroid sparing medication for treating both GCA and PMR.

It took a long time for him to admit it - yes it is the Gold Standard Treatment for RA or if you develop Late Onset RA when you have already been diagnosed with PMR and it comes along. Not too many people thank goodness.

PMRpro profile image
PMRproAmbassador

If you use the search function on the top right (on a computer at least) and enter methotrexate you will get a long list of past posts discussing just this subject.

In my case, I agreed to try it after 14 years of PMR and 9+ years of pred and mostly at 10mg and more. Within a few days my hair was falling out in chunks, my joints and muscles ached and I was bruising. For me it just potentiated so-called pred adverse effects I hadn't suffered with just pred. Then the fatigue started and steadily got worse. By the time I said no more I felt worse than at any time in the 5 years I had had PMR without pred.

Others have used it and found it easier to taper without flares and, in PMR at least, got to a few mg less pred. There are no guarantees and I think it mainly adds another layer of adverse effects. But others have done well with no adverse effects they can't live with. The only way to know is to try it.

Before I started I made it clear to my rheumy that it was a trial and I reserved the right to stop when I wanted. I have a superb rheumy, a world name in the field. He has never criticised my decision.

Theziggy profile image
Theziggy

You won't know until you try it!

I was on Metho recently and had to come off it because of side effects, but that was just me! Many people use it with no problems at all.

However as jinasc said, it is not usually used for PMR and is more use for RA.

8-)

Marijo1951 profile image
Marijo1951

I started taking MTX in December 2017 as I had two flares of GCA when trying to reduce from 25 mg pred per day. I started on 10 mg per week MTX, and this was increased to15 mg per week a couple of months later. I think it has helped me to taper my pred dose, but I also benefit from a rheumy who lets me reduce slowly at my own pace - I can't say which is most beneficial. The only obvious side effect I experienced was when I first took it in the morning and it knocked me out with fatigue for the rest of the day. I now take it at night, setting my alarm for 10 p.m. every Friday night. I go to hospital for a blood test every month to make sure my liver is functioning as it should. So far this has been fine.

Ryliefew123dogcat profile image
Ryliefew123dogcat in reply toMarijo1951

Thank you so much to all who have replied to my questions. Also Marijo1951 for your great reply. I am having trouble going down to 20mgs of pred so my rheumatologist suggested the MTX. I think l will try once more tapering down with the pred and if it doesn't work this go for the MTX. I know this drug has been used for fighting cancer and l found it scary at first. Now l am learning more about it shall really give it thought. I can never say enough about forum. You are all great survivors.

pugrescue profile image
pugrescue in reply toRyliefew123dogcat

when MTX is used for chemo, it is at a much higher dose, so assumably the side effects are also worse. I have GCA, started MTX 4 wks ago, mostly digestive issues so far. Due for another taper try in a wk (25 to 22.5), if that goes well it would be a first, and I would try to continue MTX. If I run into the same taper troubles as the last several months, I will assume MTX is not helping and not worth the nausea etc. That said time will tell and everyone reacts differently, at least with MTX you can just stop at any point if you feel the side effects are not worth the gains if any.

Ryliefew123dogcat profile image
Ryliefew123dogcat in reply topugrescue

Thank you pug rescue for your reply. I am on 22.5 pred at the moment and can't get past 20mgs. So rheumatologist suggested MTX. I am worried that it is going to make me nauseous. I think l am going to try tapering once more and if it doesn't work l will try MTX. My rheumatologist is very flexible.

pugrescue profile image
pugrescue in reply toRyliefew123dogcat

sounds like a good plan, same as me, just a few mgs lower on the pred. good luck, let me know how you make out

PMRpro profile image
PMRproAmbassador in reply toRyliefew123dogcat

The one side effect I didn't have was nausea, my rheumy suggests taking half at bedtime one day and the rest in the morning and find that helps a lot. If nausea is a problem then injections do often resolve that. But what stopped me was all the other effects - some not usually associated with mtx but an appearance what what are mostly thought of steroid-related problems.

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