All change: Due to advice 're my no polar. I've... - PMRGCAuk

PMRGCAuk

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All change

animalactivist profile image
14 Replies

Due to advice 're my no polar. I've been told methotrexate is probably the wisest choice. Started my first dose and fealt knocked out also feel ironicly more achey. My dose increases every two weeks. Anyone had success with this?

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animalactivist
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14 Replies
piglette profile image
piglette

But Methotrexate needs pred with it, if that is what is being suggested. All Methotrexate does is in some people helps the tapering of pred, it is not a substitute.

SnazzyD profile image
SnazzyD

Hi, I wasn’t aware that it was either or with Methotrexate, or are you still going to take some Pred?

Marijo1951 profile image
Marijo1951

I've been taking methotrexate weekly since the end of December. I was prescribed it because twice when I reduced my pred to 25 mg I had a bad flare of GCA. On the whole I haven't had problems and I've been able to reduce my pred dose further. I find it's best to take the methotrexate at night shortly before I go to bed. If I take it in the morning, I feel even more fatigued than usual throughout the day.

GerriMc profile image
GerriMc in reply toMarijo1951

Marijo, exactly the same as me! Often the MTX night is the best sleep I get all week.

Marijo1951 profile image
Marijo1951 in reply toGerriMc

Me too. When I took it in the morning, I spent the day on the sofa.

Gaijin profile image
Gaijin

I've tried mtx twice, it was really defeating the purpose of the long term pred treatment that we take to make PMR/GCA bearable.. MTX side effects were unbearable for me. Everyone is affected differently, but the doctors don't seem to understand.. My rheumi seems to think that by just taking the folic acid the day after takes care of any side effects.. Not for me, it didn't!

GerriMc profile image
GerriMc in reply toGaijin

Gaijin, how much folic acid? I take 5 mgs every day except the day I take the MTX. I have v few side effects and take it at night so sleep through the fatigue.

Gaijin profile image
Gaijin in reply toGerriMc

I was told to take one 5mg pill 24 hours after the injection.. I tried to take it everyday as well, there doesn't seem to be a set rule about it, but my rheumi thinks that taking the folic acid daily diminishes the effectiveness.

Marijo1951 profile image
Marijo1951 in reply toGaijin

I take one folic acid tablet Sunday to Thursday and the methotrexate on Friday evening.

bunnymom profile image
bunnymom

Glad you have found a dose that brings relief. That makes all the difference. On looking well I guess I wouldnt like to look really sick for all the years PMR can go on. We want understanding and only others with long term illnesses seem to understand. I have friends with RA and we can emphasize with each other. This site is wonderfully encouraging emotionally you'll find. Wishing you well today.

bunnymom profile image
bunnymom

Sorry posted that to the wrong person!

PMRpro profile image
PMRproAmbassador in reply tobunnymom

You can delete posts if you want to on this forum - click on the arrow with More beside it.

PMRpro profile image
PMRproAmbassador

Methotrexate alone will not work for PMR - it may help in conjunction with pred, but I know of no-one for whom it achieved remission of symptoms on its own. I also felt MORE achey with mtx than with pred alone, not to mention all the other things. There are people who use it without problems and I gather the side effects do fade after a few weeks (according to my rheumy) but mine just steadily got worse.

That is why I suggested you explore the possibility of Actemra which has been used in mental disorders.

I wish you luck.

GerriMc profile image
GerriMc

I take MTX , it was really effective in getting me down from 17.5 mgs Pred which I was stuck on. Couldn’t reduce without getting a flare. Once I started on MTX it was no problem. I take it at night so I sleep through the worst of the tiredness. Don’t really have any other side effects.

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