There’s been lots of talk about methotrexate (usually is! 
and I got to thinking: has anybody here had a really really bad side effect from it? I know there’s plenty icky queasiness, but what about major things like losing all your hair? Does this ever happen?
Anybody? And when that happened what did the rheumy do? How has that affected your treatment?
Seenie
PS I meant to say “Severe” … you knew that, didn’t you? LOL
I took one pill and threw up for 3 days straight...no exaggeration. And my doc started me on a low dose knowing I was sensitive. Wasn't expecting THAT.
Obviously I didn't take any more and moved on to other meds. There are so many out there it wasn't much of an issue.
I am on shots..only sick feeling the 1st days after weekly shot..and i am not losing enough hair to go bald
I have been on 20mg MTX since March (down to 15 starting last week, woo hoo for progress) and I have had pretty much no side effects. I think my hair may have thinned a bit, but I take folic acid almost every day which I think helps with that. I also get a little sick to my stomach a few hours after I take it so I usually choose to take it at home right before bed, but thats pretty much it. (p.s. fyi, 20mg is 8 pills)
I was in bed for 3 days after taking my first dose - 10 mg. Now three doses later, I don't get nauseous, but I do have a reduced appetite - I'm also on prednisone until the methotrexate is fully effective, and that has been upsetting my stomach. I now take 5 mg MTX twice in one day, 12 hours apart, once a week.
I inject 22.5 mg of mtx every Sunday. I have no nausea though I did when I started taking it. I began injecting it after the dose had risen to 15 mg orally per my Rheumy. I was up to 25 mg injected but my liver enzymes rose. My liver enzymes have been so stable the last few months my Rheumy is allowing me to drink occasional wine now for which I am grateful with the holidays coming up. Vermont is so cold and dark this time of year we all need a little wine! The mtx seems to be helping but I will probably need to change from Enbrel to Remicade shortly. Beside the slight hangover I get severe appetite suppression for 2-3 days. i have realized more than once that I had not eaten for a day or more! I am trying to be more aware of it lately! My hair has thinned but it really isn't noticeable. I spoke with the lady who cuts my hair and have changed the style to more layers. It is a little bit like a flapper with bangs and layers now and the thinness is less noticeable. Mtx does curl my hair! When I first started it it was quite noticeable. Family that hadn't seen me in awhile assumed I had curled or permed it! That is all the side effects I have noticed. Good luck with it!
I take the injectible equivalent of 15mg. My chief frustration with the MTX is how wiped out I am the day after my shot. I'm useless. It totally drains me. My Sundays for the last 8 weeks have been pretty much spent in bed. The other symptoms are ongoing nausea and loss of appetite. While the nausea is nowhere near as bad as with the pills I'm just not interested in food until the very end of the day. Taking pills and vitamins in the morning with breakfast is hard as I have to take the pills with food but food makes me feel sick to my stomach. So this morning I tried a smoothie--so far so good. Lots of small snacks instead of meals help, too. The anti-nausea meds work but they knock me out. Nausea at work or sleeping at home. I know which one my boss prefers...
Hi! I have taken it (MTX) for the past three years 1ML inj. No side effects whatsoever. Just added enbrel as I have a tolerance and it does not work well. I drink periodically and my labs are fine. Yeah to adult beverages!
I started out with MTX in pill form, but my doc set me up with an injection once a week because she said it wasn't working well enough in pill form. I started on Enbrel, but that too, she said, wasn't as effective as she'd hoped. I got tired and slightly nauseous with the injections, but I think it was more self-induced than actual medication-induced because it just was not fun giving myself a needle! I have just switched back to pills that I take once a week, 25 mg, and an injection (pen) of Humira every 2 weeks. Along with folic acid, I'm doing okay. Still have some aches and pains, eyes are a little blurry, but otherwise I'm doing fine. Has anybody tried Sulfar pills? My doc put me on Sulfasalazine, 500 mg, once a week. When I started, I notice my teeth were really sensitive, so I stopped. My doc said she didn't think that was a side effect, but it had gotten really bad. I too, have indulged a bit in drinking wine here and there. My labs have been fine, so I will continue on as I have.
Hi Seenie,
I have been on 20 mg MTX for over a year and I have not had any serious side effects.
I get nauseous the day after I take them, but that is all.
I am on 25 mg of Mtx, now for 2 years and Sulphasalazine for 1 year and now waiting for approval for Embrel. Some slight naseaus on the following day as I take mine before bed to minimize this. The following day I get a bit of pain in my right side. Liver function still good. Sometimes I fall to sleep in front of TV very early after Mtx. Lately I have had this metalic taste in my mouth which I don't like. I had some hair thining in the begining for the first few months where you could easily see my scalp through the hair and without me realising it soon thickened back up a few months later. I also got a new layered hair cut to help disguise it.
I am not much of a drinker of alcohol but my Rhuemy said if I took my Mtx no later than Wednesday I could have a glass of wine over the weekend. Better check it out with your Rhuemy first before you start.
Bella, have you talked to your rhu about the metallic taste?
bella said:
I am on 25 mg of Mtx, now for 2 years and Sulphasalazine for 1 year and now waiting for approval for Embrel. Some slight naseaus on the following day as I take mine before bed to minimize this. The following day I get a bit of pain in my right side. Liver function still good. Sometimes I fall to sleep in front of TV very early after Mtx. Lately I have had this metalic taste in my mouth which I don't like. I had some hair thining in the begining for the first few months where you could easily see my scalp through the hair and without me realising it soon thickened back up a few months later. I also got a new layered hair cut to help disguise it.
I am not much of a drinker of alcohol but my Rhuemy said if I took my Mtx no later than Wednesday I could have a glass of wine over the weekend. Better check it out with your Rhuemy first before you start.
Mimi- I have not been drinking wine except for 2-4 year. I am thinking 4-6 the month of December, we'll see if it affects Jan labs. If it does I will go back to cranberyy and cherry juice with ginger ale in the evenings. I do miss it but it is ok. I drink the cheapest white zinfendel at the store. I wish I could say I can tell the difference but I don't think I can! M
It mad me very sick for a long time and I also lost a significant amount of hair. You also can’t go out in the sun which is quite beneficial to us. Now I swapped to one that makes my pee look like fanta. Instead! Lol
Hi Seenie!
After reading all these posts I am reminded how diverse we all are and how differently each of our bodies react to this illness and to the medications that are out there.
I have been on MTX 25mg injections for 5 years. I noticed some hair thinning, but nothing serious until I paired my MTX (which stopped working) with Leflunomide (Arava) this year. After 6 months on that combo my hair started falling out in bunches and I felt quite sick to my stomach all the time. I stopped taking the Leflunomide and my hair has since stopped falling out (phew!) and my stomach feels relatively normal. Compared to how sick I felt with Leflunomide, the MTX causes me no side effects and the nausea is minor even though I am on the highest possible dose. As for drinking, I was 24 when I started MTX and was travelling to places like England and Japan (Where drink is the national passtime) so I 'accidentally' overindulged in drinking occasionally, my liver toxins were always normal, until I was put on Leflunomide.
I now drink NOTHING AT ALL, but that is because I think alcohol is a trigger for me. As much as it pains me to give things up, if I know a pile of greasy food and a glass of red will make put me in a flare state, that's incentive enough to avoid those indulgences...I now indulge in specialty teas and salads.
O, bull. You can go out in the sun.
Robyn Andrew said:
It mad me very sick for a long time and I also lost a significant amount of hair. You also can't go out in the sun which is quite beneficial to us. Now I swapped to one that makes my pee look like fanta. Instead! Lol
I have been on methotrexate for at least 6 months,I had some hair thinning in the beginning,now I don’t really have any side effects,my blood results are optimal and shock horror I still have 2-4 alcoholic drinks a week.I’m also on Enbrel 2 50mg injections a week. I’m obviously a lucky one 
Someone said o, bull to my comment about not going out in the sun. I don’t appreciate that and find it offensive to ‘diss’ someone’s comment. The literature about mtx was quite specific about the sun and so was my rheumy.
I don’t appreciate this comment. I have written information regarding mtx from my rheumy who was very specific about it. I come on here to share my experiences not be told I talk bull.
Angie said:
O, bull. You can go out in the sun.
Robyn Andrew said:It mad me very sick for a long time and I also lost a significant amount of hair. You also can’t go out in the sun which is quite beneficial to us. Now I swapped to one that makes my pee look like fanta. Instead! Lol