Stopping Methotrexate

[Mackymay]

I was diagnosed with RA in July and after 3 months on mtx (2 weeks on tablets and the rest in 10mg or 12.5mg injection). I have told my rheumatoid team that I can’t bear the side effects anymore. They have now advised that I stop taking it and have a review appointment with my nurse this week to discuss further treatment options. I think I’m going to be offered sulfasalazine or leflunomide. I’m so scared of side effects especially with sulfasalazine as I had a bout of labyrinthitis last year which left me with tinnitus which is now better. I also like a glass or 2 of wine at the weekend so this puts me off leflunomide. I know meds are different for everyone but has anyone got any positive stories about either of them ?

[Brychni]

Hi M - what side effects have you had? I get the high whining noise in my ears too, but I thought it was something to do with my migraines and head medication...

[Mackymay]

I had lots of nausea, fatigue, hair thinning, mouth ulcers and just generally feeling unwell despite being on folic acid 5mg x6 a week.

[Yansouneh in reply to Mackymay]

You could try methylfolate rather than basic folic acid. My understanding is folic acid is synthetic and some people don't absorb it. Methlfolate is bio-available straight away. I'm using it and when I forgot to take it I ended up with mouth ulcer. Back on it now.

[Riddlemethis]

Just had to stop methotrexate again for second time hurts my liver n made me real poorly second time - gastric problems , vomiting green puke for days so days and just been poorly and flaring still, now on hyroxy , back at hospital in a month to start methotrexate injections, I can’t get my head round it! But rheumy says injections are more tolerable, hhhmm we will see !!!

I’m same duck , all this trial an error with meds, but we have to try! Don’t be scared to try new meds , ask about hydroxychloroquine, - okay for a tipple on that too , thought I’d mention it duck just in case!

Hope your appointment goes well 👍🏻

[Mackymay in reply to Riddlemethis]

The injections were ok at the start and every week the side effects got worse for me. I’ll definitely ask about hydroxy too. Hope the injections work better for you 😀

[Riddlemethis in reply to Mackymay]

Well methotrexate twice already I don’t think injections will work , I think if you don’t tolerate it it builds up in your system then boom your down poorly! Shall see!

Yeh hydroxy I’ve tolerated well duck worth a mention 👍🏻 let me know how you get on 😊

[Mackymay in reply to Riddlemethis]

I will 👍🏼😀

[Flipper12345yellow in reply to Riddlemethis]

I had to change toMethotrexate jabs as couldn't do tablets.

Much better tolerated and I have 25mg weekly jab

[AgedCrone]

Please just take your doctor’s advice. Hearing all the unpleasant effects other people experience just encourages anxiety.....which has its own side effects.

Voice your fears to your rheumy nurse of course, but don’t slow down getting the right drugs by reading all the doom & gloom stories offered by those who have not yet found their perfect drug .

Once you are settled on a suitable drug & your Liver function tests are good, a glass or two of wine is perfectly acceptable.....so if I were you,I’d go ahead with your doctor’s prescribed meds.

[Tompark]

Yes sulfasalazine has been very good for me with Anklosing Spondylitis. Almost but not quite pain free on the 4 tablet dose started in July. I’m now going to the 6 tablet dose and am hoping that cures it however rheumatologist says I may need some methotrexate as well.

I hope sulfasalazine works for you

[bpeal1]

Sulphasalazine was the first medication I started. I’ve been taking it for 13 years now with no side effects. I’ve gradually increased it over the years and now take 4 tablets twice a day, double the standard dose for R.A. and still no issues.

I tried methotrexate but couldn’t tolerate it at all. I had nausea for 5 days every week, unbelievable brain fog and a feeling of being totally wiped out. After a couple of months the rheumatologist agreed it was not for me. I switched to leflunomide, it’s the single drug that made the most difference and again I’ve had no side effects. I’ve now been taking it about 9 years.

We are all different and unfortunately it’s a game of trial and error to find the ones which work for you. Just because one drug gives you unbearable side effects doesn’t mean they all will. Good luck finding the right ones for you.

[Knit12]

I was on sulphasalazine for over 20 years with no side effects. Suddenly my body stopped it working and I have had problems with all the drugs in the last 2 years (5 so far). Everyone is different so you have to give it a go. As you shouldn’t take antacids with sulphasalazine I switched to sherbet a great excuse for a sherbet dib dab in the odd turn for reflux

[stbernhard]

I am sorry that MTX has bad side effects for you. I am on MTX since 2010 and was on Sulfasalazine for five years. I had to deal with side effects, but my thought was that if I stopped taking my meds the damage done by RA to my body outweighs the inconvenience of the side effects by far. So I put up with them and over time they got fewer and I got used to living with them. I hope you find a solution.

[Hidden]

Sorry to tell you I only took SSZ for 5 weeks and it caused tinnitus. I stopped taking it and I still have the tinnitus 15 months later. It's very common with SSZ.

[Mackymay in reply to Hidden]

That’s my biggest worry.

[Hidden in reply to Mackymay]

It was mine too. I'd read up about it before I ever took SSZ and the rheumatologist and the rheumatology pharmacist both dismissed my worries and said they had given it to lots of people without them getting tinnitus. It said on the leaflet in the box that it is very common (more than 1 in 10) but they just didn't want to listen. I'm angry with myself that I let them persuade me. At least I got them to start me on 1 tablet per day. They wanted me to take 4 daily and I was already taking 3 other drugs! Now it has happened they still don't accept the SSZ caused it. Only you can weigh up what risks are acceptable to you. I hope you find a good solution. x

[Mackymay in reply to Hidden]

Thank you