Methotrexate - the medicine from hell

Posted Sun 31 Jan 2021 19.19 by GS

My rheumatology practice seems very pushy with the use of Mtx. They refer to it as the "Gold Standard" treatment for PsA. I am aware that it is actually one of the cheapest treatments, so perhaps that is why. I started with the tablets at 20mg - they didn't work and made me sick. I went on to the injections - they worked temporarily but made me sicker. In the last few weeks, my ALT/AST rocketed and I was told to stop everything immediately. At that point I had been in bed for a week with what seemed like the worst hangover ever, without the fun part (because let's face it, Mtx is a sober-sentence for life). When the ALT/AST began to drop, I was told, "time to start taking the Mtx again!" which I did not expect to hear. This is despite complaining to the practice several times of how awful the side effects are, with the nausea, headaches, horrible weird pains, unexplained skin rashes, stomach upsets and fatigue, alongside the obvious which is that it's only a matter of time before my liver has another hissy fit. The Mtx was already losing any effectiveness against the arthritis before the liver issues started. In total, I've put up with Mtx for about 7 months now, so they can't say I didn't try, but it does all seem a bit ridiculous for a "Gold Standard". What are people's experiences with Mtx? Is it worth pushing for the biologics or do they have just as many issues? (Probably not right now, maybe they are too risky to start in a pandemic).

Posted Sun 31 Jan 2021 20.40 by uliajay

I had the same experience With Methatrexate tabs. Rheumy prescribed tablets first then the injections. After 12 weeks of feeling worse than I did before I started. Once in the injections I had great results on my joints and pain and no psoriasis but it just made me feel so nauseous, fatigued, tummy pains diarrhoea & Hair break off so I Came off those and went onto Sulphasalazine last March. Progressively I’ve deteriorated as like you ai was told Methatrexate was the gold Dmard !!! I have had Many prednisone tablets and rescue remedy injections but they don’t work now and just make me worse. My chest goes tight and breathing is hard. The Sulphasalazine has given me Psoriasis is my scalp and I can barely walk. I’ve now Just been screened for Biologics but I’m reluctant to start the Amgivita due to Cancer risks. It’s a Biosimilar of Humira I believe part of the Adilumunab family. Currently seeing a GP Homeopath to see if she can help before I relent onto a Biologic. It just sucks 🤦‍♀️

Posted Sun 31 Jan 2021 21.22 by GS

Hey uliajay, thanks for the reply. That sounds so awful :( I had a similar effect with prednisolone - I got such a rebound coming off them, like a big flare up before it settled again. Sulphasalazine didn't do much for me either. Regarding the biologics and cancer risk, I did come across something recently suggesting it might not be as much risk as previously thought: https://creakyjoints.org/treatment/tnf-inhibitor-biologics-do-not-increase-cancer-risk-in-survivors/ https://www.webmd.com/rheumatoid-arthritis/do-ra-drugs-cause-cancer So if your homeopath treatment doesn't work then it's worth having a look and asking around to try to put your mind at ease a bit :) Really hope you find the right treatment very soon X

Posted Sun 31 Jan 2021 21.37 by toothlady66

Hi Well I’ve had a different experience with methotrexate. I’ve been on it 8 months starting at 10 mg and now at 20mg and I must say I have no side effects whatsoever. I feel much better and my psa has improved greatly. I suppose we all react differently so we have to take what’s best for us . Good luck with your treatment

Posted Tue 30 Mar 2021 14.20 by Redsquirrel

I’ve been taking Mrthotrxate injections for a few years but have always struggled with fatigue and nausea for the days after taking the injection. I have been prescribed gel for my dry mouth and eye drops for dry eyes. The gel is revolting and just makes me feel more sick 🤕 I soldiered on because my inflammation came right down and most of the psoriasis cleared up. I made the mistake of stopping taking the drug for about 6’weeks earlier this year because I just wanted to feel Norma again! (against the advice of my consultant) and gradually my PA has flared, My toes and wrist are swollen and psoriasis has come back on my face and behind my ears! I gave and started taking my injections again and now, I have horrible nausea 2 days after taking it. I don’t know which is worse? I take folic acid on 6 days. I work full time and am studying part time for a masters and I don’t have time to rest! Has anybody got any advice - I’m struggling. Tips for tackling nausea?

Posted Wed 31 Mar 2021 21.30 by GS

That sounds awful Redsquirrel. It is such a tough decision isn't it. Have you been able to speak to the consultant regarding trying something else? Surely they can offer an alternative, it is not fair to have to live that way and have to choose between two horrible situations. Sounds like you're seriously battling with all those gels/drops/folic acids, surely you have a good case that you're not winning the battle on mtx! I gave up on the methotrexate injections, the side effects were too much for me. I went back on sulfasalazine at a higher dose, and the arthritis is acceptable for now, although probably I am in a temporary dip in severity and will flare up again in the future. The psoriasis is back however, but I don't have much of it so I'm just putting up with it. But I feel wayyy better overall having stopped mtx. Sorry that isn't very helpful :( I would suggest you make an appointment with the consultant (not the nurses) and be firm that you want to try something else and how much it is affecting you, your work situation, and how much you already are trying to fight the side effects. They can also lower the dose of mtx, which is something they suggested for me. You may also qualify for anti-TNFs. Regarding the nausea, I have never found anything that can successfully combat it!

Posted Thu 1 Apr 2021 20.18 by Northerner21

The immune system is a natural part of being a human, it protects us or can be our worst nightmare when it goes haywire like it does with psoriasis. So what do we do, do we suppress it with drugs and risk damage to vital organs, or try and fix it? Get a vitamin d deficiency test before you make a decision.

Posted Fri 2 Apr 2021 09.41 by Redsquirrel

Hi thanks for your comments Northener21 and GS. I have my appointment with my consultant in a couple of weeks, I’m pretty sure he’ll offer me sulphasalazine. I wanted to see if I can manage the side effects of methotrexate first because it does keep the arthritis under control. I’ve been told that I have a vitamin D deficiency quite a while ago and was prescribed a strong supplement (stronger than the ones you can buy off the shelf). So I take those daily but I haven’t been tested for that in a while. I’m due to take my injection on Monday and I have mouth gel, peppermint tea and gingernuts lined up! I’ve also been told to hydrate, so I’m trying to drink water regularly. Fatigue is also a problem, other than rest (which I can’t realistically do) what can I try?

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