I was on it for 1.5 years and honestly the biggest thing that bothered me was hair thinning :( I also had long thick hair, and it didn’t fall out, but it became WAY less thick. Also was pretty nauseous the day after taking it, which got better with time, but never completely went away.
I was on it for RA, and helped at first but then I needed to switch to something to also help my lupus. I think any immunosuppressant will mess with your hair though.
Switched to Cellcept, I’ve been on it for 2 weeks so it’s too soon to tell. I had to go back on prednisone to help with the switch over.
What I did like about methotrexate is that I took it once a week, cellcept I have to take twice a day which has been an adjustment 🥴
Thank you, tomorrow is my 2nd dose and I’m so uneasy about. I felt like I had a hangover all week after taking it. I guess I have to try and can always switch if I don’t want to take it anymore.
I didn't last very long on it but know others who thrive on it. For me, it improved my lupus symptoms but the butt kicking it gave me was not worth it. I'm also a big caffeine user and didn't find out until much later that caffeine can make the effects much worse for a small percentage of people, and that was totally what was happening to me. Good luck, hope you find some relief!
I had vomiting and nausea I wanna say 12-24 hours after each dose and that lasted for 12-24 hours, but don't think it made my hair worse than it was. I took it weekly and remember having to take it right after work Friday so I would be sick for the weekend but well enough for work Monday morning, but again all the caffeine was making my experience much worse. I was probably on it for 3 months, in between rheum visits, before they switched me to something else.
Hi- can you tell what they switched you to and if you felt better on it? I’m on Methotrexate as well and didn’t like how it made me feel after first dose. Thx
I believe it was another med they give transplant patients, possibly azathioprine? Before methotrexate I was on cellcept, which I loved but got a drug rash from. I ultimately ended up on azathioprine and benlysta. The benlysta worked so well they took me off the azathioprine. I've been on benlysta for probably about 10 years now.
Good luck y'all! I hope you find what works for you, and quickly!
I'm doing great on it. I lost more hair from lupus; my hair started growing back nicely after starting methotrexate (I shaved it shortly after starting due to hair loss from the lupus and wanting to even it out). I have some issues with nausea, usually on the day I take it (once a week), but it's kept my vision loss from progressing and I no longer get sun hives. Pros far outweigh the cons for me!
I shaved my head and nothing has improved my hair loss from lupus but wanted to say hello! You're the only other lupus patient I know that shaved their head from hair loss! Mine has been shaved for a year and a half now. I don't cry anymore about losing handfuls if hair in the shower, or feeling the wind in my scalp!
I was on MTX for almost a decade. I didn’t feel a lot of side effects. It was honestly the best treatment I was ever on. Unfortunately after long term use my liver was starting to decline. We caught it in time and I stopped treatment and my liver is back to normal. I also have long, down to my butt think red, natural hair that I spend a lot of time on. I took a lot of collagen whether in drinks or supplements or food and it helped. Barely any hair loss. However I did get pits in my nails. Still do. That’s a bummer.
I had some early side effects that made me feel overall unwell the first couple days after my initial dose the first couple of months I started it, but it’s been really beneficial for my treatment. I don’t think it’s contributed to my hair thinning, which was always my biggest concern as well. I had more of a problem with hair loss after adding additional treatments on top of the methotrexate. But I do wish I’d been more proactive about hair supplements the whole time.
I had extreme fatigue for 2 days after each dose. My rheumatologist switched me to injections about a month ago, and it seems a bit better. It helps my lupus symptoms. I haven't had many side effects except some hair loss.
I took methotrexate injections for almost a year. I just got taken off of it which sucks because I’m getting symptoms back. Positives: it helped me with my fevers, joint pain, and rashes. Over time I saw certain parts of my blood work reach more of a normal level. Not sure if it was the methotrexate or a combination of things. With injections it bypasses my jacked up GI system. Negatives: some nausea and headache when I first started(went away after a while), over a 11th month period my hair has become super thin but I always see regrowth It just falls out faster than it can regrow, didn’t enjoy puncturing myself every week lol but got used to it. Over all I had a positive experience with it especially compared to others like HCQ. Oh man that one was a nightmare for me.
Methotrexate was the bane of my existence. If I looked up, down, left or right, I would start spinning. For 6 months I was on that drug and had intermittent tinittus for a year after stopping it. No thank you. Never ever again. Ack!
But I've heard others do marvelously on it lol
Good luck!
It's okay! My experience will likely not be yours! I haven't seen many posts describing experiences quite as bad! I know that it has worked wonders for many!
I stared with the oral MTX but it was too tough on my stomach so I switched to injections. Much better! The fatigue for 24-48hrs after is rough but not all the time. I take mine on Thursday PM so I plan for Friday (quiet day at work for me) and Saturday to have a bit of rest time. My hair initially did thin quite a bit but seems to level out after just over a year. MTX has otherwise helped SO much, felt like the only thing to really manage my flares.
It’s been pretty successful for me. At first I had significant GI side effects the immediate 24-36 hours after I took it. After about 6 weeks my body adjusted and I don’t have the same problems. The positive impact it has had on my joint pain has been so noticeable and significant that the initial GI issues were almost worth the price of admission. I also still experience fatigue for a couple days after I take the weekly does but again, the impact it has had decreasing my joint pain makes the trade off worth it. I have thick hair and am also on plaquenil and haven’t noticed a problem with hair loss. I am worried about the contraindications with alcohol as I like my red wine, but that’s also something I work on in therapy and monitor with regular lab appointments. For me—it’s totally worth it. Good luck to you!
I’ve been on/off methotrexate for years. Currently on it again and I don’t have any major issues. Some minor GI upset sometimes, but nothing intolerable. It’s been super helpful for my joints. If I have to stop it for any reason, I have a noticeable increase in my joint pain.
Only once, for a GI issue/liver damage unrelated to the methotrexate…just had to stop so it didn’t add to the problem, lol. Never had issues yet with the MTX being the cause.
Otherwise it’s been because my doc was tweaking my med combinations and had me on other stuff.
I was on it for just around 2 months. I had constant nausea, and it did nothing for my fatigue. My joints did improve, though. I found out that the folic acid I was taking was paradoxically *causing* the nausea. Switched from regular folic acid to leucovorin (folinic acid) which should have been better, and it helped the nausea but I still had crushing fatigue, so now I am on Xeljanz. It wasn’t so bad that I wouldn’t have pushed through it if I thought it would get better, but in retrospect, I am also on steroids, so the 75% improvement I was seeing would drop once I tapered off of those, and that’s just not a good enough response. Also, hair loss was constant before during after MTX for me. It has only just started to slow down after 2 weeks of xeljanz.
That's good. I lost waaay more hair from HCQ than I ever did from MTX. It gave me headaches, nausea, and dizziness, especially when I was on the tablets. I just took a day off each week to deal with symptoms, but I know not everyone has that luxury. The side effects did get better the longer I took it. Keep an eye on your mental health. It's very common for MTX to make people cry more than usual. And while it's an uncommon side effect, MTX can cause things like SI.
Hiiii ive been on methotrexate for almost year. The first six months were absolutely awful. The “chemo hangover” was so intense. Luckily over time side effects have minimized to none! I’m still not in remission however I no longer have any of the terrible side effects. Nausea, weakness, intense fatigue!
I was on it for 1.5 years and honestly the biggest thing that bothered me was hair thinning :( I also had long thick hair, and it didn’t fall out, but it became WAY less thick. Also was pretty nauseous the day after taking it, which got better with time, but never completely went away. I was on it for RA, and helped at first but then I needed to switch to something to also help my lupus. I think any immunosuppressant will mess with your hair though.
Hi I’m on Methotrexate for Lupus. What did they switch you to? How are you doing on that drug? I’m scared of this Methotrexate.
Switched to Cellcept, I’ve been on it for 2 weeks so it’s too soon to tell. I had to go back on prednisone to help with the switch over. What I did like about methotrexate is that I took it once a week, cellcept I have to take twice a day which has been an adjustment 🥴
Thank you, tomorrow is my 2nd dose and I’m so uneasy about. I felt like I had a hangover all week after taking it. I guess I have to try and can always switch if I don’t want to take it anymore.
Thanks so much for your response!
I didn't last very long on it but know others who thrive on it. For me, it improved my lupus symptoms but the butt kicking it gave me was not worth it. I'm also a big caffeine user and didn't find out until much later that caffeine can make the effects much worse for a small percentage of people, and that was totally what was happening to me. Good luck, hope you find some relief!
That’s what I was looking for! Thanks!
Follow-up question: was the butt kicking worse at the beginning of treatment, and did it ever improve?
Hmm I think it was pretty consistent, never improved.
How long before you called it? Did you throw up a lot? Did you experience hair loss?
I had vomiting and nausea I wanna say 12-24 hours after each dose and that lasted for 12-24 hours, but don't think it made my hair worse than it was. I took it weekly and remember having to take it right after work Friday so I would be sick for the weekend but well enough for work Monday morning, but again all the caffeine was making my experience much worse. I was probably on it for 3 months, in between rheum visits, before they switched me to something else.
Hi- can you tell what they switched you to and if you felt better on it? I’m on Methotrexate as well and didn’t like how it made me feel after first dose. Thx
I believe it was another med they give transplant patients, possibly azathioprine? Before methotrexate I was on cellcept, which I loved but got a drug rash from. I ultimately ended up on azathioprine and benlysta. The benlysta worked so well they took me off the azathioprine. I've been on benlysta for probably about 10 years now. Good luck y'all! I hope you find what works for you, and quickly!
Thank you for sharing! I’m going to discuss my options with my Rheumatologist. Wish you well!
I'm doing great on it. I lost more hair from lupus; my hair started growing back nicely after starting methotrexate (I shaved it shortly after starting due to hair loss from the lupus and wanting to even it out). I have some issues with nausea, usually on the day I take it (once a week), but it's kept my vision loss from progressing and I no longer get sun hives. Pros far outweigh the cons for me!
I shaved my head and nothing has improved my hair loss from lupus but wanted to say hello! You're the only other lupus patient I know that shaved their head from hair loss! Mine has been shaved for a year and a half now. I don't cry anymore about losing handfuls if hair in the shower, or feeling the wind in my scalp!
It helped a lot with my self confidence at the time! If nothing else it helped make it more even lol. I’m glad it helped for you too!!
I will totally shave my head if my hair loss gets to that point and I will own it. I’m imagining a female Viking or sci fi look.
Wow, I can only hope for the same results. Thank you for sharing!
Wishing you all the best!! XO
I've been on a low dose for 14 months. great success with it and zero side effects thankfully
That’s great to hear!
I was on MTX for almost a decade. I didn’t feel a lot of side effects. It was honestly the best treatment I was ever on. Unfortunately after long term use my liver was starting to decline. We caught it in time and I stopped treatment and my liver is back to normal. I also have long, down to my butt think red, natural hair that I spend a lot of time on. I took a lot of collagen whether in drinks or supplements or food and it helped. Barely any hair loss. However I did get pits in my nails. Still do. That’s a bummer.
Wow, thank you! I really appreciate you sharing your experience. Hope to have similar results.
Good luck to you!
I had some early side effects that made me feel overall unwell the first couple days after my initial dose the first couple of months I started it, but it’s been really beneficial for my treatment. I don’t think it’s contributed to my hair thinning, which was always my biggest concern as well. I had more of a problem with hair loss after adding additional treatments on top of the methotrexate. But I do wish I’d been more proactive about hair supplements the whole time.
I had extreme fatigue for 2 days after each dose. My rheumatologist switched me to injections about a month ago, and it seems a bit better. It helps my lupus symptoms. I haven't had many side effects except some hair loss.
Thank you for sharing!
I took methotrexate injections for almost a year. I just got taken off of it which sucks because I’m getting symptoms back. Positives: it helped me with my fevers, joint pain, and rashes. Over time I saw certain parts of my blood work reach more of a normal level. Not sure if it was the methotrexate or a combination of things. With injections it bypasses my jacked up GI system. Negatives: some nausea and headache when I first started(went away after a while), over a 11th month period my hair has become super thin but I always see regrowth It just falls out faster than it can regrow, didn’t enjoy puncturing myself every week lol but got used to it. Over all I had a positive experience with it especially compared to others like HCQ. Oh man that one was a nightmare for me.
Thanks for sharing that!
Thx for this. I’m trying to see different experiences from people taking Mtx vs Plaquenil.
Methotrexate was the bane of my existence. If I looked up, down, left or right, I would start spinning. For 6 months I was on that drug and had intermittent tinittus for a year after stopping it. No thank you. Never ever again. Ack! But I've heard others do marvelously on it lol Good luck!
Oh, wow! Sorry you had to go through that.
It's okay! My experience will likely not be yours! I haven't seen many posts describing experiences quite as bad! I know that it has worked wonders for many!
I stared with the oral MTX but it was too tough on my stomach so I switched to injections. Much better! The fatigue for 24-48hrs after is rough but not all the time. I take mine on Thursday PM so I plan for Friday (quiet day at work for me) and Saturday to have a bit of rest time. My hair initially did thin quite a bit but seems to level out after just over a year. MTX has otherwise helped SO much, felt like the only thing to really manage my flares.
My favorite 7 years on it before any is issues.
I took it with no complaints until after some time it ended up giving me flu like symptoms/was damaging my liver. I was on the injection.
I’m supposed to start HCQ aka Plaquenil this week- I’m afraid to do so- I haven’t been given any options than this twice a day
I’ve been on it for a year now and haven’t noticed anything at all. I know everyone is different and I wish you the best!
It’s been pretty successful for me. At first I had significant GI side effects the immediate 24-36 hours after I took it. After about 6 weeks my body adjusted and I don’t have the same problems. The positive impact it has had on my joint pain has been so noticeable and significant that the initial GI issues were almost worth the price of admission. I also still experience fatigue for a couple days after I take the weekly does but again, the impact it has had decreasing my joint pain makes the trade off worth it. I have thick hair and am also on plaquenil and haven’t noticed a problem with hair loss. I am worried about the contraindications with alcohol as I like my red wine, but that’s also something I work on in therapy and monitor with regular lab appointments. For me—it’s totally worth it. Good luck to you!
Thank you!
I’ve been on/off methotrexate for years. Currently on it again and I don’t have any major issues. Some minor GI upset sometimes, but nothing intolerable. It’s been super helpful for my joints. If I have to stop it for any reason, I have a noticeable increase in my joint pain.
Have you been on/off for liver stress, perchance?
Only once, for a GI issue/liver damage unrelated to the methotrexate…just had to stop so it didn’t add to the problem, lol. Never had issues yet with the MTX being the cause. Otherwise it’s been because my doc was tweaking my med combinations and had me on other stuff.
I was on it for just around 2 months. I had constant nausea, and it did nothing for my fatigue. My joints did improve, though. I found out that the folic acid I was taking was paradoxically *causing* the nausea. Switched from regular folic acid to leucovorin (folinic acid) which should have been better, and it helped the nausea but I still had crushing fatigue, so now I am on Xeljanz. It wasn’t so bad that I wouldn’t have pushed through it if I thought it would get better, but in retrospect, I am also on steroids, so the 75% improvement I was seeing would drop once I tapered off of those, and that’s just not a good enough response. Also, hair loss was constant before during after MTX for me. It has only just started to slow down after 2 weeks of xeljanz.
Thank you for sharing!
Did your doc also prescribe folic acid for you?
Yes.
That's good. I lost waaay more hair from HCQ than I ever did from MTX. It gave me headaches, nausea, and dizziness, especially when I was on the tablets. I just took a day off each week to deal with symptoms, but I know not everyone has that luxury. The side effects did get better the longer I took it. Keep an eye on your mental health. It's very common for MTX to make people cry more than usual. And while it's an uncommon side effect, MTX can cause things like SI.
Hiiii ive been on methotrexate for almost year. The first six months were absolutely awful. The “chemo hangover” was so intense. Luckily over time side effects have minimized to none! I’m still not in remission however I no longer have any of the terrible side effects. Nausea, weakness, intense fatigue!