Has anyone in this forum had effect of MTX? - PMRGCAuk

PMRGCAuk

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Has anyone in this forum had effect of MTX?

krillemy profile image
14 Replies

As written before that I have started MTX 7.5 rasing next to 10 mg weekly.

I need some engagement, as it takes so long to work if it does at all, and it must be hard to tell as PMR fluctuates so much.

Please come forward with your experience :)

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krillemy profile image
krillemy
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14 Replies
Sharitone profile image
Sharitone

Are you asking whether anyone has been helped by MTX?

Some people on this forum have done well on MTX, but most people say that it did not help. I myself did not benefit from 20mg weekly.

You can find out more from the Related Posts on the right-hand side of the screen, or in the FAQs.

krillemy profile image
krillemy in reply toSharitone

Thanks - Yes I asked if anyone has been helped - I guess the lag of feedback is somewhat discouraging.

Bluesew profile image
Bluesew in reply tokrillemy

I reluctantly agreed to try 10mg weekly methotrexate in September 2021 as I was struggling to reduce from 15mg prednisolone. I am now down to 1mg so I presume it has helped me as I have managed to slowly taper with no flares.

RachelJDH profile image
RachelJDH in reply toSharitone

I took methotrexate for a few weeks. Starting dose 10 mg a week and should be rising to 20 mg. I was so tired and sleepy and having to spend half the day in bed that I stopped thing it. I will say on the day or two after taking it I did notice a slight improvement in my PMR symptoms. Going to try leflunomide in a few weeks.

Omakaat profile image
Omakaat

Hi! When trying to taper from 60 mg at the start of my PMR/GCA the stifness and muscle aches seemed to return with a vengeance. The rheumy started me on 17,5 mg MTX. And yes, it helped. Not immediately but steady and slowly. Increased to 20 mg. I was lucky in having little side effects. I did choose to inject the stuff, since prednison had interfered with my mouth/stomach and the rest enough. I later on learned, from a pharmacist, that the 7,5 mg MTX starting dose is too low to have much effect, but it's function is to avoid the side effects which make so many people stop taking this medicine. Your body needs to get used to it. Recent knowledge my rheumy was not aware of at the time, I was lucky. Apart from missing my cold beer or G&T's ....alcohol is, at least here in Holland, strictly forbidden when on MTX. So a slowly increasing dose, together with the 3-6 weeks it takes to have any result, yes I can imagine you are having doubts. I can only say it helped me reduce prednison significantly, but in the long run. This disease is a waiting game, drives us all up the wall from time to time. Hang in there!

krillemy profile image
krillemy in reply toOmakaat

Thank you Omakaat. It does give some hope. I am increasing dose every 14th day up to 20 mg. I have no side effects yet. I hope to reach 20 mg. When did you start to taper pred. ?

Omakaat profile image
Omakaat in reply tokrillemy

Tapering prednison continuously, urged on by rheumy. But the MTX definitly helped. Though I was never completely pain free. I would have willingly gone up to 25 mg of MTX. If it helps you, and you have no terrible side effects, this maximum dosis is now recommended in Holland.

WaltzG profile image
WaltzG

MTX really helped me ....and that was without steriods.....Good luck

Gaz227 profile image
Gaz227

I will have had PMR for 9 years , I also suffer with arthritis , I went on MTX as a sparing drug initially with the exception of about 2 Mg of pred that’s all i managed to reduce on it , currently on 4 Mg pred , I have stopped MTX a couple of times over the last 15 months that I have been on it , within 6 weeks I realise why my Rheumy wanted me on it . I recently got put on another Rheumy’s list due to mine retiring and the first letter I received from him said in his opinion I have RA even thou the bloods say different . It takes about 10 to 12 weeks to really feel the benefit of MTX , I only use injections which are easy and no stomach issues . I have tried so many times to reduce pred from 4mg all that happens is I’m in constant pain in just about all my joints , strangely not muscles like you would expect with PMR also in the mix. Conclusion is I guess it depends if you have any other underlying illnesses , these autoimmune diseases tend to come a long in groups from my experience , my collection are . PMR , RA, SAPHO syndrome and Sjogren’s and that all came from going to my GP due to feeling stiff and tired in the morning . Crazy . Good luck anyway

krillemy profile image
krillemy in reply toGaz227

Thank you. Stopping MTX and have issue again is good evidence I think. The doctors here are also not agreing as one top hospital Rheumy would not give any diagosis at first. So after 4 years I am still officially still OBS. PMR. I have vitiligo a.o. but PsA have been up several times and still is as I have strange swelling on hands and feets, not looking like PMR. I will wait and see.

Prof99 profile image
Prof99

I have been on MTX for 18 months, (having tried Sulphzaladine and Azathioprine which both sent my Liver Function reading off the chart). After a year, I was convinced it wasn’t doing anything and asked my Consultant if I could stop it – he said I could reduce by half (20mg to 10mg) – within a couple of days of the reduction all my PMR symptoms returned and I realised that the MTX was working better than I thought. I preserved at 10mg for 5 weeks, but things didn’t improve. I went up to 15mg for another 8 weeks but still didn’t feel as well as I had before dropping – so after speaking to a Rheumy Nurse, I went back to 20mg. It took a good 8 weeks to finally get back to comfortable and all the sports I love. I used to get very tired in the afternoon of the day after my Monday MTX dose – but that too has diminished now. Hope this is helpful – you may find giving it more time would be useful. For me, it didn’t have a sudden, dramatic effect on my PMR ............ until I halved the dose!!

krillemy profile image
krillemy in reply toProf99

I will frame this sentence on the wall :) : "and all the sports I love." Thanks

Knit11 profile image
Knit11

I started with MTX because I wanted to avoid Prednisone. It worked very slowly and on 10mg it didn't even stop the pain from getting worse. When I reached 20mg, I was still barely able to get out of bed and the pain was severe, I started Pred. I have reduced the latter but am still on MTX for over a year. The major side effect was a lack of appetite, a disgust of food. I could easily skip a meal and had to made myself eat. I lost a lot of weight and I was slender to begin with. This feeling went away when I started Pred. I gained some weight back while reducing carbs, salt and sugar drastically.

misnomer profile image
misnomer

I take 10mg Methotrexate/week as well as 4mg/da Prednisolone I have GCA and found that I could taper steroids with help Of Methotrexate. I have paused tapering steroids at present because of recent surgery but hope to be free of them by year end not had any issues.

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