I am currently just on hydroxychloroquine for my RA. At my telephone consultation with my consultant this week I agreed to give methotrexate a go. I am severely needle phobic (it took me 15 years to get the test for my diagnosis!) So the regular blood monitoring is going to be a MAJOR trauma for me 😬😫😪 but I'm going to try my best.
My consultant said that most of his patients tolerate methotrexate well but I have really bad anxiety about vomiting and am terrified of feeling poorly. So can people please answer me these....
1. Does anyone NOT have nausea or sickness from mtx?
2. Is it mostly just nausea or actual vomiting?
3. Has anyone tried mtx and sulfasalazine? And are the side affects less with sulfasalazine?
4. Do most people move on from mtx/sulfasalazine and onto biologics? Do these have less side effects?
Thanks so much 😊
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Emseykins
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I've never had nausia from Methotrexate just a fuzzy head the following day and that has improved after a few weeks.
This is my 4th week on Sulfasalazine and I have had some nausia but again this is improving; no vomiting with either. Obviously everyone is different but many people have no problems at all.
Hi there
Sorry to hear about your needle phobia. Have you seen a therapist for that?
We are all so very different so I think it's best to go for it as someone else's experience can give you anxiety and that probably won't be your experience anyway.
All drugs have side effects I've had more on biologics than when I was on Methotrexate, sulphasalazine and Hydroxy chloroquine.
Methotrexate is a gold standard treatment for RA.
It could be a very successful drug for you and with all RA drugs you need to have regular blood tests.
I am on my 7th week of methotrexate. I would say first 3 weeks I did feel nauseous the next few days but knew I wouldn’t actually be sick. Just felt like I had a bad hangover to be honest. Last few weeks all of these symptoms have slowly improved week on week. I also take hydroxychloroquine. Again I had some stomach upset at start but again over the weeks that settled too. Everyone is different though.
In 10 years I have never vomited due to MTX or Sulpha. Yes when i started both they did make me feel a bit nauseous for the first few weeks, but that’s it. If anything Sulpha was a bit worse to start with as it gave me a very excitable stomach, so I couldn’t eat or drink anything when I was away from the house for the first couple of months. But everyone is different.
Biologics have a different set of risks and side effects, and if you are worried about being poorly then perhaps worse for you as risk of infections is higher.
Talk to your GP about getting help for your anxiety and needle phobia, as shame to end up with physical damage because you avoid treatment.
Oh I understand needle phobia... but after 23 years of RA, I’m ok with them now.
Everyone is different. For me Mtx tablets made me feel quite ill for 3 days, so bad that I went on to depression and wouldn’t touch it again for many years. Now, I’m using the Metoject pen and although I get mild nausea, it really is mild and I can carry on with my life.
I would give it a try, because many people get along just fine with the tablets.
Hello Emseykins, I can't imagine what it is like to have needle phobia. Thankfully I never had that.
Your questions:1. Very little and after moving to injections practically nothing. 2. Ne had vomiting. 3. I was on both for years without side effects that would have made wish I wasn't on them. 4. No answer, but I'd highly recommend that you read up about all available medication to treat RA on the NRAS website. There you get clear and valid information. I hope this helps a little.
I currently take methotrexate, Sulphsalazine and hydroxychroliquine and Ive just started on Rinvoq as they are not holding off symptoms (excuse my spelling)
I inject Mxt and for the first month, I felt a little nauscious after the injection, but was never sick, it lasted about 4 weeks then disapeered. I would suggest having it just before bed so you you can sleep through any side effects, its always worked for me and I've always felt fine when I've woke up in the morning. My tip with Sulphasalazine is dont have it on an empty stomach, if I ever do it makes me feel a little nauscious, but nothing at all if I've eaten. Hope this helps.
Thanks everyone, i honestly don't know what I'd do without all the information on here sometimes.
I am going to try and be brave and just try the tablets. I am planning on having a heavy carb day that day and taking them after tea so hopefully I won't feel much. Im not bothered at all by the prospect of headaches, dizziness, fatigue or brain fog, that I can manage as I run my own business so I can be flexible with work, I just know if I'm nauseous I will give myself panic attacks and then that will make life worse than the pain itself!
My needle phobia is extremely severe so I have a lot to face there, over the years I have had hypnotherapy, counselling etc and in the end I just resigned myself to that face that I was going to be a very undignified experience!! Which it totally was!! I am just going to bury my head in a jumper and cry until its over and then move on 🤣 and hopefully over time I'll just learn to live with it! That's the plan anyway!! 🤣
Dear Emseykins,
I have been taking methotrexate for 17 months without nausea. For a very short time (5 weeks) I was taking sulfasalazine as well. I did not have nausea, but the SSZ gave me tinnitus. That was 13 months ago and I still have tinnitus. Whatever your consultant says - and mine denied the likelihood of it - the British National Formulary gives tinnitus as a "Common or Very common" side-effect of SSZ.
My understanding is that the rules (from NICE) say you cannot have biologics until you have failed on MTX and one other DMARD, so you really need to give MTX a go. if you went on biologics I'm pretty sure you would need a similar frequency of blood tests. You just can't risk taking toxic drugs without monitoring.
Some nurses can get the needle in without you even feeling it. If you find one of those, maybe you could request that s/he always does your test? Ask them to use a butterfly needle and don't take no for an answer on that.
I wish you well... I also have a phobia of sickness and nausea, so my tolerance for a number of DMARDS has been quite low. I was never actually sick, but the nausea did trigger panic and anxiety for me. I just sat extremely still, not moving an inch until the feeling passed. I didn't get much past 3 months with anything other than leflunomide and prednisolone. 2 years after diagnosis (1 month ago) I started my first biologic. So far no nausea, sickness or other side effects noticed thank goodness. It does involve self-administered injections every 2 weeks, but they're so well designed you don't even see a needle. It's like pressing a marker pen on yourself for 10 seconds! Best of luck x
I had no side effects at all with MTX from day 1, but after stopping MTX in February due to liver issues and changing to Sulfa in May, I had stomach pains and diahorrea for a few weeks, followed by random bouts of nausea, reduced appetite and persistent headaches which have only seemed to ease in the last week or two. I seem to have always had a pretty good tolerance for all meds (and a cast iron stomach apparently! 😜) so I was surprised at the effects of Sulfa. Based on my experience alone, MTX would be my first choice, but it’s important to talk all your fears through with your rheumy before making a decision.
I’m on sulfasalazine now for 5 weeks and it has been really effective. Very little pain now. Need blood tests two weekly and I have had some headaches. I do recommend it
I only felt sick when I took mtx in tablet form years ago. Since taking metoject pen injections I feel fine. The pens are so much better than the previous syringe injections I used to take. However, as someone else said it is an individual thing in relation to tolerance. Getting your bloods taken will ease through time as long as your responding to the drug. Every two weeks, then four weeks and so on. I now get my bloods taken every 10-12 weeks. In relation to sulfasalazine, this did nothing for me. I now take mtx by pen injection without any problems and take enbrel (biologics) another day and have been doing well for eight years now. The more tablets you take the more your stomach lining suffers, therefore ask for ameprazole to put a lining in your stomach.
It’s worth noting that most if not all auto-immune diseases result in a leaky gut, it’s worth researching about what to eat and what to avoid. It’s easy to say don’t worry, however try and relax and go with the flow, tweak your diet and stay active as much as you can.
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