methotrexate

[tresa56]

I am currently on hydroxychloroquine and my doctor wants me to move to Methotrexate . I am stil getting hand pain and foot pain ect on the hydroxy.... The side effects of all these drugs terrifies me.. Anyone on Methotrexate and like it? Do you have more energy? Do you drink alcohol...Hair falling out...ext talk to me lol

[sylvi]

I am on MTX and i don't drink or smoke. You sound like you really need some more help. You might not get side effects at all. I don't though some do. You have to try and take a chance on it. I have always said i would take Arsenic if i knew it would help. xxx

[Runrig01]

I’m on 25mg MTX, been on it 7yrs. The rheumatologist who put me on it, was happy for me to drink as long as I stayed within government guidelines. My liver function blood tests has never been an issue, and I only have like one glass of wine with dinner, or a G&T, and have 2 days where I don’t have any. I’ve been lucky, I e never had any side effects, but except my hair initially went thinner and got more curly. It’s not noticeable though, as my hair was very thick. It doesn’t affect my energy levels, it doesn’t make my fatigue worse, and certainly doesn’t give me more energy. I’m also on a biologic and steroids.

[Pythagorus in reply to Runrig01]

Lucky you RR! I am on Methotrexate and would love my hair to go curly but no luck😟No other side effects either except that it keeps RA under control along with Benepali

[Gnarli]

Yes, it has worked for me and would turn vicious if someone tried to take it from me. I got back to 95% normal on it. Hooray! I think the trick is to persevere as it can take what feels forever (from 12 weeks). Yes , my hair thinned but it returned to nearly as it was. Please don't listen to other's horror stories, their experience may very well not be your's. Good luck!

[helixhelix in reply to Gnarli]

Absolutely! Wouldn’t be without it now.

[Gottarelax]

I've been on it a year now at 25 mg dose and while it's taken a long time to work, I'd say I feel about 70% better. I don't have any side effects (non-smoker and hardly drink). CRP levels were brought down with a short course of prednisolone at the beginning and they have stayed right down with MTX (and sulphasalazine). As for energy levels, they are somewhat better but I do quite often get that flu type fatigue which is the most irritating part of this disease now.

[HeadInASpin]

I only started on it in May of this year after being very poorly and waiting a while for diagnosis and treatment. It took around 14 weeks before I could really tell that it was working. I felt like I had a hangover at first but then I was given the folic acid for six days a week and now ok. Hair fine and I have an odd drink or two but tend to stick to a beer rather than strong wines or spirits. I have regular blood tests, which are all fine so far. All I can say is that I'm now getting my life back and there would have to be a damn good reason to take my methotrexate injections away. Good luck...hope you feel better soon x

[Timboo]

Hi, i follow these thread’s because i was exactly the same as you scared of taking methotrexate. Well after 10 months on 20mg i have no side effects, no hair loss, no sickness and yes i drink alcohol plenty of it 😬 i can’t say the drug is doing much tho probably going to increase to 25mg this week or try injecting. Give it a whirl i just take it on a Monday and completely forget about it.

[LarisaLarisa]

Hi Tresa! I ve been on Metrotrexate for 1 year, the side effects were really bad, after the injection i was feeling bad for 2 days after, nausea, tiredness and of course loosing hair , so i would not go back to Metrotrexate. I was so happy, when my consultant stopped me the treatment.

[AgedCrone]

I had 7 very successful years on 25mg Mtx + Folic Acid 6 days a week…I was convinced I would be on it forever. I had no unbearable side effects & my babyfine hair wasn’t affected.

My rheumatologist was quite happy if I had a glass of wine most evenings.

Sadly after 7 years it just stopped working & I moved on to Rituximab in 2016 & all is going well. Stop reading about how Mtx affects other people…RA is a journey & we all travel in different ways…there is no One Size Fits All.

Good Luck..hope Mtx suits you.

[Ascidian]

I've been on mtx for over 3 years. I only felt mildly unwell on it for the first week or two and my hair hasn't fallen out. I didn't drink for the first 2 or 3 months, in case my liver objected to the mtx, but since my bloods were always fine I now have a glass of wine 4 or 5 days a week, and occasionally a second glass. More than 1/3 bottle of wine, though, and I feel unwell (not drunk, but definitely not right). I noticed some improvement after about 7 or 8 weeks, and by 4 or 5 months pain and swelling were definitely reduced but not gone. Then suddenly after 11 months I felt fantastic - even my husband commented on how much more energy I had. I seem to be having a minor flare at the moment but I am hoping that it just down to the stress of having my stepdaughter and her partner and toddler living with us while they renovate their house.

I would definitely say it is worth trying the mtx. If you have NO improvement after 12 weeks, then it is clearly not the one for you, but bear in mind that it can take a while to reach optimal performance. Push to have folic acid 6 days a week, and my rheumy recommends taking it just after the evening meal, although the patient leaflet doesn't mention taking it with food. Good luck

[BoneyC]

I've been taking MTX for over 40 years (dx. 1971 in childhood). I currently inject 17.5mg but was on 25mg orally for decades. I didn't notice any hair loss in my younger years only now post menopause which may or not be caused by MTX.

I don't drink alcohol, only on occasions, by choice.

[Drmjl18]

I was diagnosed in Dec 22 and I started on 20mg of mtx tablets in Jan/Feb, then moved to self inject pens, then up 25mg dose by pen + hydroxychloriquine in July.

I have never smoked.

But I still enjoy alcohol. When I started mtx I kept a note of my units, aiming to stay around 14 and always below 18. This is more than recommended but, importantly, my bloods have never shown any negative signs - weekly tests initially and now monthly; today in fact! I do have 2 separate months through the year when I don’t drink at all, usually after Christmas and after the summer hols.

I don’t have any side effects from the drugs at all.

I had a steroid injection in summer for a little extra boost against pain in summer.

Overall, my experience with mtx has been fantastic! I was quite worried at the start, as I am already immunosuppressed after a splenectomy, but it’s been no problem at all and I’ve been able to return to an active life (golf, gym, hiking, etc) after an awful 2022.

Everyone will be different, but it’s surely worth trying?

As others have said, be patient. It can take up to 4 months to get the impact, although I improved much more quickly than that.

Use your Rheumy nurse for questions. Get steroids to help your symptoms if you need to in the early days and…

Good luck!

[Moonjean]

Hi Tresa56. I asked to come off MTX after two years on it. I was diagnosed 3 years ago and given MTX orally but due to the nausea it was changed to injections however nausea continued so I asked if I could try something else. I am now on hydroxychloroquine and feel absolutely great. No pain and no side affects. I can confirm the MTX did work but I just couldn’t bear having two days of nausea. Good Luck.

[Jackadoodle]

Been on Methotexrate hydroxychloroquine Benepalli for 8 years now, one drink Sunday Lunch,

2 days of being lathargic and feeling sick after injection but worth the effort to be pain free.

[bpeal1]

Everyone responds differently to medication. You won’t know if it’s the one for you if you don’t try it. Methotrexate wasn’t the medication for me but I’m glad I tried it as it works so well for others. I know other people who take it with no side effects and are busy carrying on with life. You’ve got nothing to lose as side effects from it stop when you stop taking it (except in very, extremely rare instances)

It’s always worth bearing in mind when reading posts on forums like this one that people most frequently post when they are struggling. For every person posting on here that they are struggling with methotrexate there are several others off living their life with no issues.

[TheMarfs]

I’ve started Metho literally this week. Adding into the Hydroxychloroquine I’ve been taking since being diagnosed 18 months ago.

Same as you, I’ve been worried about side effects but you don’t know until you try so I’m giving it a shot. Three days of folic and 10mg Metho on a Monday. Hopefully in 12 weeks I’ll feel much more myself! Good luck xx

[Jig-saw]

Hi, I’ve been on methotrexate for nearly 15 years 20mg tablets. I was closely monitored at the beginning I am on hydroxychloroquine at the moment for discoid lupus. Hair, I lost all my body hair my eyebrows are almost non existent (I sometimes use eyebrow tattoos) I haven’t lost my head hair but I do have lupus hair around the hairline, I rarely drink but get no issues if I do, I know my body and pace myself, this year was the first time I was told to take a break by the nurses, only 3 weeks then straight back on it, also any flares in my opinion were probably down to a lot of stress.

I was also on hydroxychloroquine at the start of treatment then switched to methotrexate, hydroxychloroquine only added in because of discoid lupus emerging, hope everything goes smoothly for you.

[greynot]

I've been on methotrexate for 4 years and am in remission!I was ramped up to 20mg over a few weeks initially. Folic acid on the 6 non mtx days.

I had 'mtx hangover days' initially, where I felt a bit nauseous and brain foggy the day after mtx, but they died down.

I still enjoy some beer or wine, in moderation and never on mtx day. My Iiver and kidney functions are fine.

My hair is thinner, but also drier which kinda compensates volume wise! I take biotin which has improved it (with rheumy team approval).

I hope it works well for you...keep us informed!

Xxx

[Happy5]

Lol at "like it " comment doubt anyone would say that. However I would say it controls my RD so I can have a reasonable quality of life.

They monitor the first year carefully , but you'd know much sooner if its working.My hair is thinner but prior to starting treatment RD was causing my hair to come out in handfuls, I now have a great hairdresser who cuts it so it looks thick & I use shampoos etc with Biotin in. Regarding alcohol I still drink G & Ts or certain Rose or red wines I get on with. I avoid the days round my MTX injection. Injections worked better for me than tablets, & I take folic acis each day except MTX day.

My routine is I take anti-sickness tablet (prescribed) half hour befor MTX injection do injection prior to bed time & take a Co-codamol (prescribed) before I sleep. This way I sleeep through worst of side effects. Also I have my water bottle by my bed so I can drink water when I wake up and again in the morning. Drinking water is a big help.

I was on hydroxychloroquine but taken off it as wasn't helping.

While I would never like it it's more to do with hating having RD and needing MTX or similar. I am grateful for the excellent treatment which provides me a quality of life I'd not have without it. RD has to be controlled or it will continue to damage the body.

Hope this helps.😊

[Jakey2020]

I took low dose of mtx but then they doubled it and I am losing hair.. but getting pain relief is worth it!!

[Portinatx17]

I have been on Methotrexate for yrs and Amgevita past few months. I have also had Hydroxychloroquine for 4 yrs but gave me eye issues eventually. Sulfasalazine helped for a few yrs. Always taken combo of 2 drugs. No I dont drink alcohol but thats my choice as I value my liver. I know of a lot who did drink but not to excess at all. My hair has thinned considerably but started 5 yrs after Methotrexate so dont think contributed.. Took a while to kick in, about 8 wks and initially I felt normal but other drugs have always had to be added for a while now. Only you can decde, we are all different. I delayed it a yr and I got joint damage. Good luck x

[Koroush]

I went on hydroxychloroquine last November ( 2022) and 10 days later I went on methotrexate just like you I was terrified of going onto long term medicines with all the side effects I used to smoke which I went cold turkey last November I have never drank went divested in my mind but quickly realised my best choice are these drugs almost a year later no side effects no loss of hair or any other issues just recently had meeting with specialist they are putting me on a stronger drug adalimumab self injecting (one of the things that reassured me was a contact by a 75 year old lady who has been on methotrexate for 14 years which was through versus arthritis help group it really helped me a lot would like to take the opportunity to thank them

[smilelines]

methotrexate was not the drug for me. I only lasted on it for two weeks. I hope it works for you. You just have to try it and see. I am on leflunimide now and I have had no noticeable side effects while others can’t take it.

[spartacus101]

I started on 20 mg methotrexate tablets in April. Due to the nausea I swithched to injections in June and also started hydroxychloroquine. By September I was able to walk a mile but was also being sick up to 5 times a day and losing lots of hair. The consultant has switched me to leflunomide and I am back to hobbling around the house but I know I have to give the medication time to work. I really hope methotrexate works for you.

[MSA71]

I’ve been on methotrexate since being diagnosed at the end of January this year. Initially on 15mg which was upped to 20mg in June with 2g sulfasalazine added in August to get the RA under control.

I like you was apprehensive about taking methotrexate due to the possible side effects, however I’ve been fortunate not to suffer any, either with methotrexate or sulfasalazine. Just needed things tweaked to try to get my RA under control.

You’ll not know until you try it, so don’t let ‘possible’ side effects put you off. If you get any you can look at meds with your rheumatology nurse or consultant.

[smilelines]

I would probably ask for the injection rather than the pills because it sure seems like the injection causes way less stomach issues. The injection is really easy as the needle is very small.

[smilelines]

Another thought is they will probably make you try the injections if the tablets make you feel unwell so this way you will skip a step if you need to change medicine. I haven’t read of anyone who is taking tablets because the injection was too hard on them. Nor have I heard of anyone taking an injection having to go back on tablets. They can start you on a smaller dose of injections. I am happy I started on injections so when I had severe cramping we knew methotrexate was not for me. I didn’t have to go though experimenting with it anymore. But this said you might be one of the lucky ones and methotrexate might work beautifully for you. 🤞🏻

[AW600]

Methotrexate for me was a game changer, I was put on this alongside a course of Prednisolone intially. Once I weaned off the pred 8 months later, unfortunately the MTX wasn’t enough on its own. I have since been put on hydroxychloroquine. Also swapped naproxen for etoricoxib as naproxen was giving me bad tummy pains even though I take omeprazole too. This combination seems to be working for me, but I’m never without pain completely, you just learn to live with it. I still have the odd bit of alcohol with these drugs but not a lot (I think alcohol can make my joints worse the next day). MTX hasn’t made my hair fall out, I would recommend giving it a try

[2bichons]

I have been on 15 mg 1x p/week of Methotrexate for 3 years now. my hair initially became thinner, but nothing drastic, I feel that has now slowed down. I drink socially. I do get the RA fatigue once in a while (it's def real) but you still need to stay active and not let it get the best of you. Let's just say I could not do w/o MTX

[Vonnie69]

Yes many years. It has worked well for me. Not supposed to drink alcohol is down side. Plaquinil did not work for me either. Tried that first when first diagnosed. Best wishes

[Vonnie69]

No hair problems, they put you on folic acid and test your blood every few months to ensure you are tolerating the drug well. Little or no alcohol. If drug works for you you will feel like yourself again. If not, there are many other new drugs on the market