Methotrexate side effects

[Pippsy]

I started the tablets a couple of weeks ago along with a high dose of folic acid. I had nausea, fatigue, headache, a burning sensation from stomach to mouth and then mouth ulcers all within the first week. I didn't take the next dose and two weeks later I still feel nauseous. Has anyone had this and how long did it last after stopping the drug? I've a history of stomach issues.
They've said I can go onto injections but I'm really stressed now because I feel sure I'll still get the side effects. Has anyone had this experience?
So fed up that it feels like a choice between joint pain or stomach pain.

I’m currently unmedicated. I tried Adalimumab and another one I forget the name of plus leflunomide before the biologics but the lef sent my BP through the roof and the biologics didn’t suit me at all. I then had a total hip replacement in May so it was decided to leave the change onto the next biologic until after the healing was complete. I’m due to see the nurse specialist early next month to see what’s next.

I’m currently being treated for RA but we’re also investigating PsA plus Schogrens and Lupus. Such are the joys of autoimmune!

The injections are much better

Wow this is so interesting. I’m so sorry to hear of these horrendous side effects. I was on oral methotrexate no bother but it wasn’t effective enough so ramped up to 25mg injectable. I have no side effects but it’s still not strong enough on its own so I have to team it with another injectable.

@thatwastheendofmytether you have been through it. I hope you find something tolerable that works. I do have a friend with RA who has had no luck with a host of drugs but is now on a biologic that is working wonders for her.

Just coming back to this thread.
I only took one dose of the tablets and gave up. The nausea stayed with me for 6 weeks.
I started with injections at the beginning of October had a couple of gaps for chest infections, but it's been like night and day. I had mild nausea and some hair shedding. I was told to increase my folic acid to 10 mg the day before and after methotrexate and 5mg other days.
I feel like the side effects are actually getting worse now though. In addition to the nausea I have a strange taste and a lot of bloating and wind. I suspect some of it is the folic acid.
Not sure what to do next because the good news is that it's working really well.

Whit's an MAB trial please?

Ask about folinic acid (also called calcium folinate) instead of folic acid. Game changer for me. GP cannot prescribe though, only hospital.

Thanks @postop I had heard of that but thought it was a US thing. My methotrexate is supplied by the hospital anyway, it's not delegated to primary care here.
How was the folinic acid different? I'll have to work out how to ask for folinic acid without appearing to be patient Google.

It was actually someone on MN that recommended it. It is a different, more easily absorbed preparation I think. It made a huge difference to the nausea and sickness. It is impossible to get from a community pharmacy though, they simply don't stock it. I had a lot of difficulty trying to source it, then finally a pharmacist explained that it isn't available. I eventually convinced my rheumatologist to let me try it and it worked. I just take one tablet 48 hours after the methotrexate injection. It has to be stored in a brown bottle to protect it from light. It is called folinic acid or calcium folinate.

Just the word MTX brings me out in hives. I’ve been off it for 10 years and I still get shivers down my spine thinking of those lost 5 years. Also on hydroxychloroquine and now leflunomide which I tolerate much better. Will have to come off hydroxychloroquine soon (just reduced) as have early retinopathy. The joys of RA.

good Luck x

I visit residential homes - one patient is 86. She’s on the injections

You need to switch to injections and if you don't tolerate those you can speak to your team about switching to a different treatment altogether. It's very common, don't suffer too long.

@Skippingaround I'm on injections if you see my last post.

Thing is it's working. For the first time in ages I am not in pain and don't feel exhausted and fatigued all the time. So if I can overcome the side effects I'd like to stick with it.
The next treatment would probably be biologics but my rheumatologist is a year behind with appointments. Yes a year.

That was my experience. I had anti-nausea medication to take with it, but the injections are so much better. I don't get nausea, although large doses of folic acid and Nystatin are the only thing that keeps the mouth sores and burning pain under control. I occasionally get mouth lesions even now.

Hope you make the switch.

I’d call your Rheumy hotline and explain any side effects, I’ve done this with mtx as I was in a 2 day brain fog with it so the specialist nurse saw me, she liaised with the consultant before and after I saw her and consultant put me case forward to the medicines label for biologics (my hospital does this because of cost of biologics). I’ve now been taking adulibmumab since early August and the PsA pain is much better, albeit it’s unlocked another layer of pain which SN thinks is fibromyalgia, so GP put me on amitriptyline before I see my consultant in February
good luck! What condition do you have by the way?

@Beenwhereyouareagain if you read down the thread I am now on injections but I still have nausea with the added symptoms of bloating and gas. I think some of this is caused by the folic acid.

@chunkyBoo I have rheumatoid arthritis. I am going to call the nurse. I'm just keeping a daily diary at the moment so I can work out whether the folic acid is responsible for some of it. I think it is because I switched from taking it in the morning to the evening and timings the bloating and gas moved as well.

Sorry, I replied without reading all of yours. (Bad Been!)

I do my injections at bedtime because they make me sleepy. I have IBS, so I hadn't thought about gassiness being related.

It does make me ache in other places than my joints, usually days 2 &3. Soft tissue pain.

You may have found that you'll develop other autoimmune and inflammatory diseases. Over time, the sarcoid worsened and I have Polymyositis and a few less debilitating issues as well. Most us have several. My medication has changed and increased over the years and I've tried to accommodate each time. I never thought I would end up disabled- retirement looks very different than I thought it would.

I guess what I mean is that the side effects are terrible sometimes, but at least I can still get around for short distances. I can't imagine how bad this would be without treatment. You obviously take good care of yourself, and I hope you get the methotrexate worked out.

I’ve been on it for 8 years, 25mg. I had tablets first, which gave me a bad stomach, so moved to injections for a few years, which didn’t give me that.

I’m back in tablets now, as where I used to inject is a bit of a mess. I don’t have the bad stomach now.

I get the usual side effects of fatigue and nausea.

After starting injections in September I was getting some nausea in spite of 5mg of folic acid 6 days a week, so 40mg a week..
The rheumy specialist nurse suggested I increase in the day before and day after to 10mg, so 60mg a week.
My nausea kept on getting worse.

So I called the nurse and we had a discussion around folic acid. I mentioned folinic acid which she had only come across once. I said the nausea reminded me of pregnancy. I had hyperemesis in both pregnancies with sickness and nausea for nine months.
She suggested I reduce the folic acid to once a week to see if the folic acid was to blame, (which is the norm in most regions of the UK).

Lo and behold the nausea has gone. It seems it wasn't the methotrexate but the folic acid causing it. Makes me wonder how much of my pregnancy nausea was folic acid!
I'm to report back after a couple of weeks but I will still ask for the folinic acid because I have mouth ulcers and some hair shedding.

Me again.
After reducing the folic acid my nausea disappeared but the headaches increased.
I rang the helpline and got a different nurse who wasn't hugely helpful. I wasn't ready to give up on mtx but wanted to try tweaking the folic acid or try folinic and.
She said no to both. Told me to take a two week break and had booked me to see the consultant in January.

My headaches have now become unbearable because they are continuous and don't respond to paracetamol. It could be something else, viral perhaps,<clutches at straws>.
So frustrating as it's working really well. I'm not sure if they would consider me for biologics , not least because I have no inflammation due to the mtx working. I also have a history of breast cancer 5 years ago.