What’s right what’s wrong

[Lauranorder]

I’ve been on Methotrexate since I was diagnosed last September. I was pretty chuffed because I didn’t appear to have any of the usual side effects, no nausea, no flu like symptoms 😊

However, I was plagued by constant ulcers, sometimes 8/9 at a time and the pain....arghh. At my last rheumy appointment they said it was a side effect of the MTX and decided to try me injecting it instead for a trial period of a month. It’s been 3 weeks and the ulcers are just as bad as ever. They mentioned that if it didn’t work I’ll be tried on hydroxychloroquine.

I’m not reading very good things about this though. Has anyone else had a similar ride to me and what have you found?

[JFlay]

Hi there, I was diagnosed in January and was on MTX tablets, I came off it mid June due to side effects (no mouth ulcers), it was a shame because it was working for my RA symptoms. I've switched to Hydroxychloroquine, now on my third week. So far the only thing I've had with it is bad wind 😂 but that's easing off now. I already have tinnitus and it doesn't seem any worse. Have to have eyes checked yearly which I did before starting. Last night was the first night that my feet were ok in bed 👍 so think it's starting to work 🤞 hope it goes well for you if you try it.

[wishbone]

I had to come off mtx and go on hydroxy. It's one of the milder/safer meds but was not as effective as mtx for the 2+ years I was taking it. That said, it did help my RA and was a lot better than nothing, which was my only other option at the time.

I used to have the occasional ulcer with mtx but nothing to talk of with hydroxy. I think it may have contributed to gut issues, but I was taking other possible stomach irritating meds at the time so can't be certain. Also, I've had mild tinnitus for many years, which hydroxy didn't seem to affect until I stopped taking it for a couple of months then went back on it...2 days later my tinnitus went crazy. I stopped taking it straight away and the tinnitus gradually returned to around the level it was though possibly slightly worse. Following that little episode rheumy decided to stop me taking it. Many people seem to manage with it just fine though.

Importantly you will need to have regular eye tests. I had one before starting the drug then annually.

Good luck.

[Hidden]

Hi there, you may find the below post and replies useful:

healthunlocked.com/nras/pos...

Some of our members have agreed that warm salt water held in the mouth for a while up to 5 times a day will stop the mouth ulcers and to do this again at the slightest tingle will stop them coming back. Lots of good tips above as well.

[helixhelix]

I had ulcers from the tablets and was swapped to injections. That plus salt water gargles for a while, and increased folic acid, solved the problem. I don’t think it took too long. Can’t really remember now but a matter of weeks. Maybe it will all change next week? Fingers crossed!

[Lina282]

I am on Metoject 17.5mg per week and Hydroxychloroquine 200mg daily for a year now. I still have mouth ulcers quite often and tinnitus but my rheumatologist doesn't change my medication because of these symptoms. Do I have to ask for it? 🤔

[stbernhard]

I had mouth ulcers for quite a while when I was started on MTX, but the benefit far outweighed the inconvenience so I stuck with it. Only occasionally get them now.

[Georgiab123]

My doctor told me to take folic acid 6 out of 7 days it helped a lot

[Shelly1969]

Hi I had big trouble whilst on the methotrexate hair falling out in chunks lost 3/4 of my hair headacheahes (migraine) and I'm now on Hydroxychloroquine and touch wood so far so good no side effects and Im not getting those burning feelings when Im lying down on my side before the pain was unbearable on my hips but since I've been on the Hydroxychloroquine no more burning or my joint pain has subsided immensely hope this helps good luck xx

[JFlay in reply to Shelly1969]

That's good to hear 👍 I started hydroxy 3 weeks ago after giving up MTX so fingers crossed 🤞

[Shelly1969 in reply to JFlay]

Fingers crossed for you that it works on you the way it has on me Good luck x

[Sencosheep]

I had mouth ulcers but upping folic acid to 6 a week sorted it.

[RAlife2018]

Same happened to me with my first dose of 10mg; got off for them to clear. Then got back on at 5mg then 10mg the next week; this was March 2019. Now I’m still on 10mg, but feel I need to go to 12.5(5tabs).

[Carolsos]

I have never had mouth ulcers. I take folic acid 6 times a week. I am also on leflumomide and hydroxy and 20g mtx. Good luck.

[Lyneal]

Hi, I am on Methotrexate injections, but just had to stop because of repeated infections. But I had a lot of mouth ulcers, I got a brilliant mouth wash from the GP and it worked wonders. Side effects from MTX aren’t nice. But don’t know anything about the new drug you are going to be put on.

[Wrh03]

I’ve been taking plaquenil (hydroxychloroquine or hcq) for about 4months. And just started MTX as well 3 weeks ago. I take Hcq in the morning with breakfast because it impacted on my sleep if taken with dinner. Sometimes I get Mild nausea so always take with food. It takes ages to have an effect, like 4 months. Less impact on liver so no need for all the blood tests that you need on ssz or MTX. The eyesight side effect is extremely rare I’m told. Hope this helps

[Hidden]

Hello Lauranorder,

I was started on MTX and HCQ simultaneously in March with Prednisolone added soon afterwards. I had also been put on iron tablets by the GP a few weeks earlier, so it's hard to know where the side-effects came from. I had a degree of nausea, not too bad, in the mornings, bad wind, black stool varying from normal consistency to liquid, almost diarrhoea. As the medicines were working, I found I could tolerate these things, but I was very relieved to be able to discontinue the iron after three months as that put an end to the diarrhoea-type symptoms.

The MTX had been increased gradually and at around the same time as stopping the iron I reached the maximum dose of 25 mg MTX daily and I was started on Sulfasalazine. I also started tapering the Pred.

After about a month on SSZ I got tinnitus. I'd never had it before. I first reduced and then stopped the SSZ. A fortnight later, with no change to the tinnitus, I first reduced and then stopped the HCQ. That was only a couple of days ago. i still have the tinnitus, but I hope it will go away.

I had taken the precaution of having my hearing tested (at Specsavers!) before starting the SSZ because I was worried that it can cause hearing damage. I am going for another check tomorrow to see what effect it has had. I'm seeing the rheumatologist on Tuesday and I'll give her a copy of the results. She may send me to ENT, but it could take months to get an appointment.

Please be aware that your experience with the drugs could be totally different from mine.

I would be very interested to know of other people's experience with drug-induced tinnitus.