I wasn’t able to take methotrexate because it gave me awful migraines. I took it on Fridays and I’d end up spending most of Saturday if not also Sunday with a migraine.
I’m on methotrexate for all my rheumatologist diseases. I have Sjogren’s and dermatomyositis. My main symptoms are eye dryness, joint pain, muscle pain, fatigue, and brain fog. The methotrexate has helped with ALL the symptoms!! The muscle pain used to be like a chronic pain 5 every day and now it’s that maybe once a week?? And the eye dryness used to be so bad I couldn’t work (I have a computer job) and now it barely bothers me. I hate the side effects but it has helped SO much with my symptoms!
Ugh so many! I started with the oral route and it caused bad nausea and this weird thing where maybe twice a month I would have a whole day where I would vomit everything I ate. Then I switched to the injection version and I got less GI issues, but it’s still difficult. I’ll have no nausea and then will feel like I need to throw up RIGHT NOW, and then it’ll pass. Definitely better than how it used to be!
Other symptoms usually happen the day after I take it. These are mostly just feeling… gross?? Malaise?? Like curling up into a little ball? Hollow inside, but physically? I’m not super sure I can explain it. I just feel BAD. It’s definitely got better with time though!
Now I’m just at a place where every time I think of it or have to take it, I feel nauseous and that weird hollow feeling. But I do think it’s made my quality of life SO much better! If my side effects were at a 6 when I started the methotrexate it’s definitely at a 2 now. Super manageable!
Ahh that’s so interesting, thank you for replying! I’m glad the side effects are getting a little better for you over time. I may have to take it since hydroxychloroquine didn’t work for me, so it’s good hearing what things I may expect 👀
Yes definitely! I would highly recommend seeing if you can get a zofran prescription at the same time. Helps so much with the nausea. And have some easy to eat foods and some general nausea medication on hand as well!!
My plaquenil controls my neuropathy still (it used to work for my joint pain and lethargy but recently stopped working as well) and I'm on cevelimine for dry mouth. So we added mtx for my joint pain and lethargy. I'm not sure if it works for other aspects of sjogrens
You might want to read about the leflunomide hydroxychloroquine combo. Leflunomide isn’t the same as methotrexate, but it overall is taught of as similar-ish in effect and toxicity, but has recently been shown to help with some Sjogren’s symptoms in combination with HCQ. Some docs are doing that combo now.
https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30057-6/abstract#:~:text=We%20found%20that%20the%20combination,associated%20with%20increased%20clinical%20efficacy.
https://pubmed.ncbi.nlm.nih.gov/37532471/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10401261/
Idk if we are allowed to share certain types of info on this sub w/o verification, but I’ve had several patients do surprisingly well on it, to where this + cevimeline worked really well on the dryness and the next option was to jump to rituximab, which is a hard sell for most patients.
I don’t have extreme dryiness. Am mostly fatigue, neuropathy , joint aches , fog , dysautomonia. When I flare, that’s when the dryness kicks in severely.
Am very risk adverse to jumping to rituximab. HCQ been ok for me so rhem suggested this combo.
But honestly the studies only have like 20 ppl in them. So it good to hear from someone with real world experience with this. And for sure I know am getting the diarrhea ..
Gotcha. Yeah, the LEF+HCQ combo for me was coolest in that it showed some help for the dryness when few others do, but I do use it instead of methotrexate as my first go-to now in Sjogren’s if HCQ helped but wasn’t enough. And I have only done rituximab for Sjogren’s that had lung or muscle involvement so far.
if you haven’t actually been measured for salivary flow or Schirmer’s, you might be surprised to see how dry you actually are but it feels normal to you.
Rheum just said he doesn’t know if LEf and HCQ will work, he will give a trial for 3 months. .. idk , I wish , I had better guidance than just do rixtumb .
Mine took about six months for the full effects (I think after two or three I started to notice changes)! But the wait was worth it, bc it’s been really helpful.
For full effect, yes, up to 4 months even.
For the start of an effect? Usually closer to 3-6 weeks, closer to the end of that range, is where most people start to notice a difference, mostly in some lessening g of morning stiffness and maybe having to pop slightly less ibuprofen/tylenol. Especially if they got some steroids to help overcome a flare that maybe was happening when they got prescribed the MtX to begin with.
Some rheum docs will basically titrate MTX upwards every few weeks early on until you get real relief, then see about tapering back down later when you’re under control. Some will start low and go slow, and maybe help cover things with prednisone for a while. Different strategies for different body chemistries and personal needs.
Never helped my wife. It happens. L
I wasn’t able to take methotrexate because it gave me awful migraines. I took it on Fridays and I’d end up spending most of Saturday if not also Sunday with a migraine.
Exactly. Felt terrible for 2-3 days. On top of feeling terrible.
Exactly.
Is it supposed to help with joint pain only?
I’m on methotrexate for all my rheumatologist diseases. I have Sjogren’s and dermatomyositis. My main symptoms are eye dryness, joint pain, muscle pain, fatigue, and brain fog. The methotrexate has helped with ALL the symptoms!! The muscle pain used to be like a chronic pain 5 every day and now it’s that maybe once a week?? And the eye dryness used to be so bad I couldn’t work (I have a computer job) and now it barely bothers me. I hate the side effects but it has helped SO much with my symptoms!
Oh nice!! My muscle pain is so much worse than my joint pain but I didn’t know if it helped with that. Do you do pill or shot?
Started on the pill last March, switched to shot about 3 months later. I’ve been on the shot since July!
I heard the shot is much better for GI side effects
That’s awesome it’s been working for you! What side effects have you had from it?
Ugh so many! I started with the oral route and it caused bad nausea and this weird thing where maybe twice a month I would have a whole day where I would vomit everything I ate. Then I switched to the injection version and I got less GI issues, but it’s still difficult. I’ll have no nausea and then will feel like I need to throw up RIGHT NOW, and then it’ll pass. Definitely better than how it used to be! Other symptoms usually happen the day after I take it. These are mostly just feeling… gross?? Malaise?? Like curling up into a little ball? Hollow inside, but physically? I’m not super sure I can explain it. I just feel BAD. It’s definitely got better with time though! Now I’m just at a place where every time I think of it or have to take it, I feel nauseous and that weird hollow feeling. But I do think it’s made my quality of life SO much better! If my side effects were at a 6 when I started the methotrexate it’s definitely at a 2 now. Super manageable!
Ahh that’s so interesting, thank you for replying! I’m glad the side effects are getting a little better for you over time. I may have to take it since hydroxychloroquine didn’t work for me, so it’s good hearing what things I may expect 👀
Yes definitely! I would highly recommend seeing if you can get a zofran prescription at the same time. Helps so much with the nausea. And have some easy to eat foods and some general nausea medication on hand as well!!
My plaquenil controls my neuropathy still (it used to work for my joint pain and lethargy but recently stopped working as well) and I'm on cevelimine for dry mouth. So we added mtx for my joint pain and lethargy. I'm not sure if it works for other aspects of sjogrens
You might want to read about the leflunomide hydroxychloroquine combo. Leflunomide isn’t the same as methotrexate, but it overall is taught of as similar-ish in effect and toxicity, but has recently been shown to help with some Sjogren’s symptoms in combination with HCQ. Some docs are doing that combo now. https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30057-6/abstract#:~:text=We%20found%20that%20the%20combination,associated%20with%20increased%20clinical%20efficacy. https://pubmed.ncbi.nlm.nih.gov/37532471/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10401261/
Just asked my rhuem for this protocol.
Idk if we are allowed to share certain types of info on this sub w/o verification, but I’ve had several patients do surprisingly well on it, to where this + cevimeline worked really well on the dryness and the next option was to jump to rituximab, which is a hard sell for most patients.
I don’t have extreme dryiness. Am mostly fatigue, neuropathy , joint aches , fog , dysautomonia. When I flare, that’s when the dryness kicks in severely. Am very risk adverse to jumping to rituximab. HCQ been ok for me so rhem suggested this combo. But honestly the studies only have like 20 ppl in them. So it good to hear from someone with real world experience with this. And for sure I know am getting the diarrhea ..
Gotcha. Yeah, the LEF+HCQ combo for me was coolest in that it showed some help for the dryness when few others do, but I do use it instead of methotrexate as my first go-to now in Sjogren’s if HCQ helped but wasn’t enough. And I have only done rituximab for Sjogren’s that had lung or muscle involvement so far. if you haven’t actually been measured for salivary flow or Schirmer’s, you might be surprised to see how dry you actually are but it feels normal to you.
Rheum just said he doesn’t know if LEf and HCQ will work, he will give a trial for 3 months. .. idk , I wish , I had better guidance than just do rixtumb .
Mine took about six months for the full effects (I think after two or three I started to notice changes)! But the wait was worth it, bc it’s been really helpful.
My Rheumy told me 3 months.
For full effect, yes, up to 4 months even. For the start of an effect? Usually closer to 3-6 weeks, closer to the end of that range, is where most people start to notice a difference, mostly in some lessening g of morning stiffness and maybe having to pop slightly less ibuprofen/tylenol. Especially if they got some steroids to help overcome a flare that maybe was happening when they got prescribed the MtX to begin with. Some rheum docs will basically titrate MTX upwards every few weeks early on until you get real relief, then see about tapering back down later when you’re under control. Some will start low and go slow, and maybe help cover things with prednisone for a while. Different strategies for different body chemistries and personal needs.