Methotrexate side effects

[Timboo]

hi, i have ibd and recently diagnosed with RA i started sulfalazinze but had an allergic reaction to it, doctors say start methotrexate but im so scared of the side effects especially hair loss. Im struggling to find positive reviews. Can anyone help

[helixhelix]

methotrexate gave me my life back! Ok, it’s a powerful drug but for 11-12 years its been my good friend. I wouldn’t be without it.

My hair thinned a bit for the first 6 month, but is fine now. And I feel a bit sleepy the morning after. But that’s it.

For many, maybe most, of us it’s great. But people are more inclined to post when problems, so you don’t get the “I tried this drug and it worked” stories often. But that could be you.

[thelmar]

hi - I have been taking methotrexate for nearly 20 years first as tablets but for a long time now as injections. I have always taken folic acid alongside it and I now take hydroxychloroquine as well and have a monthly infusion of abatacept (a biologic). Methotrexate has never caused me any problems. It did take a while to kick in but I hope I never have to stop it now. As helixhelix has said you are more likely to read about the problems but there are lots of us who have experienced success.

[football64]

MTX is a mixed bag, some love it and some hate it.

I lasted 5 weeks.

My Anti CCP is 300, RF is negative. Rhumatologist suggested as RA not full blown yet that Hydroxy…. was suitable. No side effects. So far so good for me - but dread the thought of MTX ever again.

Good luck

[RainbowLeopard]

MTX has worked wonders for me. Ive been on it for 8 months now and I've not noticed any thinning of my hair. The only side effect I had was fatigue, which is better with a higher folic acid dose. Uncontrolled RA is not fun at all, it's got to be worth a try. If you get severe side effects then you can stop. If you don't, then great!

[Blackberrywine]

Didn't do anything for me, but it might be worth a try for you. I think it may be dependent on type of arthritis. Some folks do better than others. We are all biologically unique so what works for one person may cause issues for another.

One thing I'd say is if it doesn't work, don't feel bad about it. Try something else!

[Bobbie50]

I was given sulfasalazine first off and had an awful reaction to it, then was put on methotrexate injections and I’ve never had bad side effects, been on it years now. Yes my hair and eyebrows thinned a little but that didn’t last. I have never felt sick or anything and it really helps your RA. Hope this helps x

[Chockyuk]

I take 20mg and have had RA since 2019.

It works for me, but apart from it upping my ALT at first, it’s settled down. My hair thinned at first, but it’s all ok now, I’ve also been lucky not to have had any nausea.

I also take Sulphasalazine, but that’s only recently been introduced in comparison to Mthx. Sure I have fatigue, lots of it, but I can put up with that in comparison to the pain I had.

Good luck, I hope it works for you 🤞

[Fra22-57]

I took it a long time ago and it did thin hair a bit.I was concerned as my hair is thin anyway but I persevered as it was helping.I was doing great until rheumatologist wanted me to up dose to highest .It then started damaging my liver so I had to come off it .For some it’s ok but best to have a good read up on it and decide the pros and cons.wish you luck 🍀

[CagneysMum]

hi. I’ve been on methotrexate for almost 4 years and I did start to lose more hair during the first 6 months but took a non prescription biotin supplement and it stopped .. my hair dresser comments now on how thick it is. In the beginning it did make me feel a bit nauseous immediately after taking it in an evening…. but that wore off after a couple of hours and was gone by the next day. Methotrexate has worked brilliantly in helping control my RA and I’ve had no further flare ups. In fact over the last 14 months I’ve slowly tapered my dose down from 20mg to 10 mg injectable. 👍

[Gymcactus]

I've been on methotrexate for 6 years and have had no problems with it apart from sometimes feeling a bit nauseous the day after, started on 20mg but now down to 15mg and taking sulfazalazine as well. I have no joint damage so far and no bad flares, just have to pace yourself and not overdo things, I am positive for the RA factor so easier to treat I think.

[cyberbarn]

Like you I had a bad reaction to sulphasalazine. And I my digestive system is now so sensitive to NSAIDs even Cox2, that I can't take anything like that.

My Rheumy said next on the list was MTX but I was very concerned about the gastro aspects and managed to convince her to start me on injections. I am on a very low dose at the moment, and things are soooooo much better side effect wise than the other drugs!

I have been on it for 10 weeks now. The first injection came with a bit of nausea, a headache, and fatigue. But the nausea was only brief. and everything else resolved a day later. By the third week there was no nausea but I was getting the headache and fatigue. I fell asleep in front of my computer at 5.30pm the Friday before Christmas which is most unlike me!

I still get a slight headache the next day, but even the fatigue has now resolved down to a bit more tired on the following day or two, but nothing that interferes with things. I am taking folic acid the day before and after, and I have tired to talk to the nurse to see if upping that would help, but in the mean time I am taking non-prescription folic acid on the other days.

And it has helped several of my symptoms. Despite the rheumy saying there is no signs of inflammation in the MRI in my back and SI joints, that was the first noticeable thing, I can walk normally again and bending over doesn't kick off the sciatica! I think I managed to have a flare in my hands and feet a couple of weeks in, but they have settled down too, and are slightly better than before.

So I know how scary it can be to try the next medication after a bad reaction to a previous one, but give it a go. Get the injections if you can, keep a diary of side effects and benefits (I do one in a spreadsheet with morning, noon and night, for each symptom area) and don't be afraid to say nope, this isn't working for me. Good Luck!

[rmros]

I did not get on with sulfasalazine. I gave it 8 months, I really tried. I had abnormal bloods and awful side effects on it and rashes. I also hated swallowing 6 large pills every day.

I was similarly fearful of methotrexate but I needn't have been. I find it easier to take and side effects minimal. Best of all, it's worked a lot better.

I can't say I've had noticeable hair loss and I take hydroxychloroquine as well.

[XGOLF]

I've been on Methotrexate for nearly a year & my hair has thinned but not so much that anyone else would notice. The only side effect I notice is the odd feeling of nausea but I do take the Folic acid on 6 days per week. I hope this helps.

[puffyface]

Hi Timboo, I totally understand your fears. I have been putting it off for ages… but eventually started taking it on Wednesday night this week. I took it with food and drank lots of water. I slept for a very long time on Wednesday night and had a bit of a headache (not much), yesterday evening. No nausea…I feel fine. I am worried about hair loss and have started a biotin supplement and marine collagen…just in case they help! 😊 Good luck! It might change your life!

[Timboo in reply to puffyface]

how you finding the methotrexate a few weeks on ? I started it Monday and do worried about the side effects still.

[puffyface in reply to Timboo]

I’m afraid I have stopped (we’ll think so as tonight is med day). . I started feeling dreadful about 36 hrs in. Exhausted, sick, horrendous tummy, indigestion and headache. The next week the headache was much worse and I felt horrid again…and on it went. I have nobody to talk to about it…and honestly think that feeling properly sick for 3 days a week is worse than what it’s trying to fix. My digestive system is all messed up and have developed a cold sore? Any ideas would be very helpful x

[Timboo in reply to puffyface]

what dose was you taking? I only took 10mg this monday and ive felt fine. Just got really bad anxiety about loosing hair. Ive not got any ideas has im new to this i tried 5 weeks on sulfalazine and had a really bad reaction. The steroids made all pain disappear but was told there a short term solution. Hope they find u something more suitable, or a lot of people are saying inject the methotrexate to ease symptoms.

[puffyface in reply to Timboo]

Good luck with it all. I can’t decide whether to keep going or not. I don’t have RA, but other autoimmunes….so just not sure. My rheumatologist said you can try this, this or this…..no recommendations!! Hair is the worst isn’t it. It gives me nightmares. My hairdresser said…don’t wash it too often, brush if gently before you wash it…and dont really brush it between washes. I also take biotin supplement and absolute collagen gloop each day.

[Timboo in reply to puffyface]

yes literally nightmares. You could perhaps try a reduced dose this week give it one more go before you give up. I’ve read quite a few good reviews but the bad always stick in my head.

[Happy5]

It's a suck it and see situation, that was my approach 10 years ago when I started on the tablets then moved to injections, (nausea main reason ) take folic acid daily apart from MTX day taken off hydroxychloroquine. I'm in a remission finally after an up & down time due to erratic taking MTX due to surgery, vaccines, boosters, taking antibiotics, all meaning need to to stop my MTX during those times. Now able to take regularly I'm as well as can be, & is the difference between a quality of life or not such a great time.

If you search for "hair thinning" "nausea" etc on this site there's lots of helpful support.

In the end, if after a reasonable time of trying it you don't feel happy on it then get in touch with your RA team they'll discuss things. Also doctors diagnose & prescribe the specialist nurses sort your care plane so talk to them, they are experienced in RA care.

All the best 😊

[Gottarelax]

I started taking MTX last Nov and having read about all the side effects I braced for the worst but I've really had nothing. I may have felt more tired after my first dose, My consultant fortunately started me on 5mg folic acid per day which may be helping. My hair is fairly thin anyway and I've not really noticed it worse. I'm just hoping the medication will actually work because so far there has been no effect.

[BeachsideVia]

I too just started MTX 3weeks ago. I was bone frightened. I had BC 8 years ago and had 2 rounds of chemo, among other things. I lost every hair on my body! I finally sucked it up and made myself realize this dose for RA (im taking 17.5) is very very low. I take the pills 1 night a week, some fatigue, no hair loss! My last flare up before MTX lasted over a week. Lately I have had some stiffness and pain, but that was once, and it lasted 1day! I am all in with MTX!

[Timboo in reply to BeachsideVia]

hi was just wondering how you getting on with the methotrexate. I started on Monday still really anxious about the side effects.

[BeachsideVia in reply to Timboo]

it has been 7 weeks now. I have had no major flare ups. Some mild pain and swelling in knees that went away. I pulled a neck muscle last week and it got very painful so I was put on 6 days od steroids. Meanwhile I persuaded mu doc to prescribe low dose steroids (5mg a day) for a while until the MTX has time to work. I think it is working so far. My side effects are maybe a little queasy stomach day after, a little more tired day after, no hair loss yet. Will get bloodwork in a week or so. It has really been ok! Especially if this drug can stop the crazy random pain and swelling. I am resting a lot, and take 1 mg folic acid a day but I am going to increase that. Just waiting and hoping.

[Timboo in reply to BeachsideVia]

sounds promising for you. They gave me 5mg steroids too, 5mg of folic acid 6 days per week maybe cuz the nurse could tell i was so frightened of the side effects, they wanted me to take 15mg methotrexate but i talked them into 10mg, might be brave on Monday and take the 15mg. Thanks for replying these chats are really helpful to me.

[MerielPB]

I used to get hair loss in the early days but it gradually tailed-off. I've never looked like I was losing hair. As for other side effects, when I was first diagnosed someone advised me to take mtx at night, then you sleep through the worst of the side effects. Thus far I have not suffered any major side effects. Occasionally I get a touch of indigestion the day after I've taken my mtx.

[Newbie73]

I’ve been on MTX for 9 months. It’s currently doing the heavy lifting of getting on top of my RA. I moved onto injections and have had hydroxy added recently.

Minimal side affects, had my folic acid upped as I started getting mouth ulcers.. The increased dose sorted that out.

Hairdresser noticed recently that I have an inch of new hair pretty much all over so hair has already recovered from any shock caused by MTX - I hadn’t even noticed any increase in hair loss and I have fine straight hair.

As others have said MTX doesn’t suit everyone but I dread to think what state I would be in now without it. My RA is not yet under control but much much better than it was. 80% there.

[Carolsos]

I was on sulfa but the big tablet were a problem and I didn't think it worked for me. I took mtx completely transformed me. I had side effect feeling and being sick and hair loss for 6 months. After 6 months I was back to my normal fitness. I was on tablets for a good few years then injection for a few years until I got a phobia about injections and had to stop. I then went back on tablets but by then it had stopped working. I was on mtx for 7 years! I think it's one of the best treatments going. I also while on mtx leflumoide and hdy and they all worked for me at the time. I am on benpalli now with injections and I got over my phobia of injections. Good luck

[DavidT]

I have been on 20mg MTX for 12 years. firstly on tablets for six months with bad side effects, switched to injections and most of the side effects went. Some weeks I feel sick and fatigued the following day but other weeks feel fine. I have not suffered any noticeable hair loss. I also take Folic Acid every day except injection day which does help, I am also on on Sulphasalazine and hydroxychloroquine. Overall I am more than happy using it as my RA is almost completely under control. Unless you suffer very bad side effects I would say go ahead and try it.