Experience with Methotrexate?

Posted by abbeyc @abbeyc, Feb 14, 2022

Hello, I have been on 20 mg of Prednisone for about 2 months and at my next Rheumatologist check-up this week, my doctor is going to talk to me about the option to add Methotrexate on top of the Prednisone. Has anyone tried this? Any success? Any advise? Seems like another strong drug to have to worry about the side effects. Wondering if it's worth it.

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abbeyc | @abbeyc | Feb 17, 2022

In reply to @tillysam "I had terrible digestive problems." + (show)

Thank you for sharing. I heard that could be side effect.

judyjh | @judyjh | Feb 17, 2022

In reply to @tillysam "Exactly right! Who knows?" + (show)

Lost track of this thread.... yes, taking Folic Acid, 5 mg of prednisone, and 8 tablets of methotrexate. Interestingly, I am one of those with no markers for PMR, but the treatment is working well, and I hope to get off the prednisone. THe question about hair loss, no... this is still a low dose compared to a chemo dose of the drug. For those with no markers (Sed rate, CRP), I sympathize, as it's hard to get someone to listen (and I was in horrible pain). The rheumatologist treats me for symptoms, put PMR on the chart, but who knows!

rashida | @rashida | Feb 18, 2022

In reply to @abbeyc "Thank you for that information. This makes me feel better about trying it. Those of us..." + (show)

@abbeyc - my husband has PMR and he had to take Prednisone. The weaning process was very slow and it took eighteen months for him to wean off it. He had to continue with the weaning process long after his pain was gone.
He is off Prednisone completely now, and has had just one flare up that lasted only two days. He hasn’t had another flare up since 2019.

rashida | @rashida | Feb 18, 2022

In reply to @wv54 "The only thing I was told - if I didn't take the Folic - I would..." + (show)

@wv54 and @abbeyc - none of the people I know who are on Methotrexate have had hair loss. Neither did I.

queenie2030 | @queenie2030 | Feb 18, 2022

In reply to @rashida "@wv54 and @abbeyc - none of the people I know who are on Methotrexate have had..." + (show)

I lost hair on MTX not all but it thinned on top especially. I had many side effects besides that and quit taking it after 4 months. My hair has stopped falling out even though I am on 15 mg prednisone. We all react differently.

rashida | @rashida | Feb 19, 2022

In reply to @queenie2030 "I lost hair on MTX not all but it thinned on top especially. I had many..." + (show)

@queenie2030 - that’s true. … what works for one doesn’t necessarily work for another.

2heal | @2heal | Feb 20, 2022

In reply to @rashida "@wv54 and @abbeyc - none of the people I know who are on Methotrexate have had..." + (show)

I’ve lost so much hair, I had to have the shower drain professionally plumbed to remove a huge hair ball. I have sparse coverage now that is hard for me to manage and style, so I have cut it off quite short with hopes it will grow back. I want to stop the methotrexate completely as it lowers my immunities, too. Do I have to gradually cut it out or just quit it?

abbeyc | @abbeyc | Feb 21, 2022

In reply to @2heal "I’ve lost so much hair, I had to have the shower drain professionally plumbed to remove..." + (show)

I have not started Methotrexate - my doctor wants to wait, so I don't know much about it....Sorry. I would ask your doctor. and are you maybe on a high dose? is it for PMR?

judyjh | @judyjh | Feb 21, 2022

In reply to @2heal "I’ve lost so much hair, I had to have the shower drain professionally plumbed to remove..." + (show)

Wondering if you are on oral or inject dose? How much? I have no hair loss, and that sounds upsetting! I am sorry to hear

martiesowers | @martiesowers | Feb 21, 2022

Been on methotrexate along with methylprenisolone since July, 2021. My hair started thinning when the methotrexate injections began. Took me a month or two realize it was the addition of the methotrexate. I am doing 10 cc injection every week. I had a problem with hair loss in 2019 and tried Viviscal and it worked! So I am trying it again and it seems to have slowed the hair loss considerably. I still see a few every now and then but not every day like it was before. Hope you find something that will work for you.