Rhematoid Arthritis - advice on alternative to Methotrexate

[Tomhardyshadabath]

I've had RA since I was 24 (24 years), been on Methotrexate for six years. It's fantastic in terms of controlling my RA but for the last year I've really suffered from nausea and headaches for around 2 days after taking it. I take Folic Acid, I'm already taking the injectable dose (15mg) but just can't lose two days a week feeling terrible. Are there other DMARDS out there with less severe side-effects? I'd be grateful for any advice. Methotrexate was fine for the first five years. I took Sulphasalazine prior to that but it stopped being effective.

Following this as I’m in a similar situation after 6 months on methotrexate

There are alternatives out there but it's a battle to get them. You need to push. There are biological treatments that work but they don't use them as a first or even second option as they are expensive.

Hi

Are you only on Mtx? Are you in remission? I inject Mtx and Enbrel weekly. You would need a good active disease score to qualify for funding for a biologic and to keep qualifying. Have you spoken to your consultant?

I personally hate Mtx but these days as long as I keep up the folic acid and drink tons of water I can manager without two days of nausea, sometimes I get one but not often now. Your dilemma if you’re well is, do you risk a change and risk your overall wellness but, if the side effects are outweighing the benefits for you then you should defo push hard for an alternative.

I tried Sulphasalazine and then methotrexate and neither made a difference. I was then offered leflunomide which did work and I was able to take it for a couple of years before coming off to have a dc. Maybe that could be one to look into.

Hi all, thanks for your comments. I had a telephone appointment with my Rheumatologist last week who confirmed from the last three sets of blood tests that my RA is in remission. Which makes coming off Mtx more of a gamble! We've agreed a plan to up my dose of folic acid to three times, then six times a week. I've also been prescribed an anti-emetic. If the side-effects are still as bad, then we will look at reducing the Mtx dose from 15mg to 10mg. I think that this is probably the right plan but I've started to dread taking it (I'm due to take it tonight). 🤞 that the folic acid does its thing...

I take sulphasalazine and Hydroxychloroquine. They worked for a long time. I now also take steroids which work really well but I wouldn't recommend for all kinds of reasons.

I take folic acid 6x a week.

I’ve been on MTX for two months

I feel like I’m poisoning myself but that’s about the psychological issues re what it is

My period was two weeks late and lasted a day. It was just like that pathetic period you get as your first one 😂

Did you know in “fat sick and nearly dead” Phil the truck driver was on methotrexate and was able to come off? I’m giving it a few months then going to start juicing and see if that helps

Can I just ask: hiw to they know it’s in remission? I just get LFTs and read blood cells (on it for psoriatic arthritis)

I haven’t taken my methotrexate this week as my GGT has rocketed to 156. Had to get my friend to look that up for me as I haven’t been able to get a phone appt with my GP. I have an appt with the rheumatology nurse next week and I’ll discuss then what to do next

I can't take mtx due to liver issues. Have been successful with leflunamide and plaquenil at the moment. Fingers crossed I can stay on these for awhile. For me, it's all about clean diet. I'm noticing that the cold weather isn't helping matters, but that might just be me.

Following as after 6 months on mtx I have stopped due to continuous bouts of thrush

Just a warning if your RA is in remission. DMARDs often take 3 months to take effect. Equally they take 3 months to wear off. I had no symptoms and bloods were good, Rheumatologist had me stop my treatment. 3 months later * had the mother of all flares, then of course it takes another 3 months to get the drugs working again

Quick update: let's make that leflunamide, hcq and sulfasalazine. Just prescribed the sulfasalazine yesterday. Anyone else on these 3? Anything to look out for with the sulfasalazine?

I take methotrexate 15mg injections & 6 x sulfasalazine a day , though I am also prescribed Ondansetron for nausea, so avoid the 1-2 day yuck feeling with the methotrexate.

I actually came of methotrexate, I had enough of the side effects.

Currently on painkillers and antinflamatories.

I have psoriatic arthritis

Anyone taking azathioprine?

It made a huge difference to me to take folic acid every day, instead of once a week.

I've also taken hydroxychloroquin (sp?) alongside.

Now I'm on reduced Mtx and a biological drug.

Following with interest. Just seen consultant who has done X-rays and ultrasound but thinking RA and seeing specialist nurse in a couple of weeks. Thought my syptoms were menopause as told a few years ago my bent finger was repetitive strain from using a mouse... had a little cry 😭 (maybe a slightly bigger one) as work in healthcare so have seen many patients with arthritic conditions and just signed myself off work as I'm not physically coping, can't grip, on my feet all day and aching like billy-o. Consultant has suggested methotrexate so want to hit the ground running. Shall I just start taking folic acid?!!! My question was, is anyone taking anti sickness but I see some are. Thankyou for starting this thread. It's good so see people talking and so valuable to me xxx

Can you ask for biologics? It might be a fight but so worth it. They put me on them to ttc as methotrexate is apalling for that and I'm allergic to sulfasalazine

Thanks for your reply. Really don't know much about the meds but have enough info here to do some research. Symptoms weren't that bad when I saw the consultant but suffering this week so will keep a diary and and hopefully will get what I need 🤞

@dontdivorceoverchacha
Not everyone gets nausea, I've been on 20mg a week for 15yrs (now along with a jax-inhibitor) and only get nausea when they tried me on 25mg. I take it a night before bed.

I know it sounds daft but when I was on 25mg I did find that marmite on toast helped in the morning. Someone suggested it and although I was skeptical and it didn't work completely it did help.

Biologics are far better, ask for Humiria I have zero side affects.

My yd has JIA/RA and this is the medication she has been on since the age of 8 (now 22)
Medication list (not in use order):
Methotrexate (pills & subcut)
Abatacept (the last one tried),
Adalimumab (Humira)
Baracitinib (Oliumiant - JAK inhibitor)
Etanercept (Embrel)
Hydroxychloroquine
steroid - injections, infusion and pills, Tocilizumab
Tofacitinib (Xeljanz - JAK inhibitor)
along with Prednisone, paracetamol, ibuprofen, Codeine, and currently Gabapentin.

She was on mtx first and it did work well. But, as she approached her teens, she started to have a lot of mental health issues due to her life being school which she hated followed by a weekend of feeling too sick to do anything fun. When it came to a head, I told her dr she was to come off it. It has been years now of trying to find something that will help that doesn't have awful side affects. She is on another JAKinhibitor Rinvoq which she doesn't feel is helping & makes it difficult to eat or drink due to nausa. Antiemetics help but she's not allowed to take them too often.
It might be worth speaking to your dr about JAKinhibitors as they are specifically for RA.

I'm in Spain. I was diagnosed at 31 and given a biologic called Cimzia as first treatment option. It's very good, I'm symptom free and only side effect is I get UTIs slightly more often (although I was always prone to them so talking about getting one 5 times a year instead of 3 or 4 so not much change)

Methotrexate, sulphalazine, plaquenil etc are considered very old fashioned here and biologics are the way forward. Push for biologics.

Hi I had terrible nausea with Methotrexate although it did work well for me. My consultant tried me on Metinject which was worse if anything and she said it wasn’t fair to expect me to continue. I came off all my medication in October 2015 and had to flare to meet the criteria for Biologics. I eventually started Cimzia in July 2016 which was a long wait. I soldiered through with various courses of steroids.