Side effects of medication

[Vivienham]

I've been on methotrexate and hydroxychloroquine for just over a year, and in the last few months have had some unpleasant mouth ulcers. I assume this is a side effect of the mxt. Does anyone know of an effective treatment? Also, I've been feeling giddy when I drop my head forwards or backwards. Another side effect?

[Hidden]

I know ulcers can be a side effect not sure about the giddy feeling. I do get giddy with fatigue. We can develop problems at any time with our drugs. I have been onMTX for over 4 years no problems then this feb developed appalling fatigue with it .. won’t bore you with the ins and outs but now nurse believes mtx is causing me problems now . Definitely contact your team to be sure all is ok.

[Vivienham in reply to Hidden]

Thank you J1707. I'm very sorry to hear about your fatigue and after having no problems for 4 years. What can you do about it? (Sorry, I put mxt and it should be MTX!)

[Hidden in reply to Vivienham]

😁 brain fog... I’m also on entanercept it’s not working so I’m starting baricitnib in 4 weeks . It’s one of those drugs that can work without MTX the plan is to lower the dose once baricitnib is established.

Do contact your team they maybe able to help.

[Lolabridge]

Do seek medical advice as the other have suggested. I'm on neither so I can't advise you from my own experience. Sorry.

[Vivienham in reply to Lolabridge]

Thanks Lolabridge - I will do that.

[Moog73]

Hi vivienham👋

I have had awful ulcers and dry eyes from the combination of methotrexate and other meds.

I had my folic acid dose increased to daily, except Friday when I have my metoject. This seems to have helped me a lot. Still feel awful on a Saturday though.

Hope you get things under control soon.🤞

[Vivienham in reply to Moog73]

Thank you Moog73. I'll ask my rheumy to increase the folic acid as at the moment I only take it the day after MXT. I'm sorry you've got dry eyes too - that's a symptom of Sjogrens isn't it?

[Moog73 in reply to Vivienham]

Good morning vivienham (in a Robin Williams voice)😁🙄

Yes my doctor did think that and did a blood test to check, but it wasn't.

I was also on amitriptyline, which I have stopped.

I think the increase in folic acid and stopping amitriptyline has definitely helped.

Hope you get it under control 😘

[charisma]

I had mouth ulcers from the start of going on Methotrexate. I’d get the neck issue checked. 🙂

[Vivienham]

I think ulcers are a popular side effect of MXT. You're right that I should get my neck checked. The trouble is GPs don't want to see patients nowadays!

[Vivienham]

Thank you charisma by the way!

[Sheila_G]

Dehydration causes lightheadedness. Are you drinking enough water?

[Vivienham in reply to Sheila_G]

Probably not and I know I should drink more. Thank you Sheila_G.

[Otto11]

I had awful mouth ulcers sometimes up to 30 or more large ones. On my tongue too. I was referred to the dental hospital & had all sorts of meds & mouthwashes but the only thing that worked well was a paste called Adcortyl in Orabase. Not sure if it’s still available as it was 15 years ago.

It’s miserable isn’t it x

[Lizard28 in reply to Otto11]

That paste was great, I used to get it from dental hospital, I’m not too sure it’s available now, it was a weird paste but it did work. I was also given a little pink betnesol steroid tablet that I put straight onto the ulcer, if I caught it before it grew to a large one, it was super. One doctor told me I shudnt have done what another doctor told me to do that but by golly it really worked. Now I buy Difflam spray, I find that gets them under control, it helps take the pain away especially before you eat. They are so painful little blighters.

[Otto11 in reply to Lizard28]

I think I had little pink tablets too that I dissolved in water & rinsed with. Betnasol possibly. The paste was the best for me x

[Lizard28 in reply to Otto11]

That’s what the second doctor told me to do but the first doctor that prescribed them told me to put them straight onto the ulcer, that really killed them and worked better. Strange how doctors vary. I attended the dental hospital for a year with giant ulcers. I also was told my iron levels were low. I tried anything they gave me.

[Vivienham in reply to Lizard28]

I looked up Betnesol on the net and it seems to be used for eyes, ears and nose. It sounds like Otto11 and Lizard 28 you both had really nasty ulcers. I'm not sure mine are as bad as that but they are bad enough!

[Vivienham in reply to Lizard28]

I just replied to Otto11 saying that you can't get the Adcortyl in the UK any more, which is a shame. But thank you Lizard28 for recommending Difflam spray.

[Vivienham in reply to Otto11]

Mine are mostly on my tongue, particularly under it, too and it is miserable! It looks like Adcortyl in Orabase isn't available in the UK any more. That's a shame. Thank you anyway Otto11.

[Otto11 in reply to Vivienham]

That is a shame it worked so well x

[Maxim1]

There are so many side effects. I’m on it too and I hate it! The studies to even prescribe mtx were done so long ago I do question it’s validity today. When I discuss side effects with the consultant he refers to the old studies and evidence...... each of us will react differently. Try drinking lots of water . Hope you feel better soon

[Vivienham in reply to Maxim1]

Thanks Maxim1. I'll certainly try drinking lots more water.

[AKDellitt]

I take hydroxychloroquine and suffer from mouth ulcers from time to time, as well. Mouth ulcers are listed as one of the medication's side effects.

[Vivienham]

I didn't realise that hydroxy can cause mouth ulcers as well as MTX. So if you're on both, which I am, you don't stand much chance! Thanks AKDellitt.

[samjam]

yellowcard.mhra.gov.uk/ If you think you are experiencing a side-effect with your medication you should always report it to the Yellow Card Scheme. Doesn't matter if you don't know if it is a side effect you should always report it. Helps others. There is also a free app.