Appetite and taste

[mogs231]

Red meat......I cannot stand the taste of red meat/mince since \i was taking methotrexate for RA which I now do not have I have oesteo arthritis and shouldnt have been sent to RA clinic! It really annoys me that I was taking all those meds/blood tests etc to be told I didnt need them!!!I must have been taking them for about 2 years and my taste buds have suffered ever since!!

[Neonkittie17]

How frustrating, annoying, maddening .. all of those! 😑 Antibiotics change my taste for drinks, but Mtx hasn’t done that for me. I hope as it leaves your system over the weeks/months that your sense of taste returns to normal. 🙏🏻

[Gnarli]

That's beyond infuriating! I can only offer sympathy because MTX did it to me too. Any sort of meat made me feel nauseous at the thought let alone eat it. I can manage chicken sometimes and I'm anaemic now. I do hope the awful effects wear off pdq.

[Neonkittie17 in reply to Gnarli]

Sorry to hear that. Was the rest of your taste for other foods affected?

[Gnarli in reply to Neonkittie17]

Yup. Almost too many to mention. In fact some things to alleviate the MTX hangover, like ginger ale, began to trigger the nausea.

[Neonkittie17 in reply to Gnarli]

Oh gosh .. how long since you stopped Mtx? If it’s more recently I hope the strange sense of taste disappears and more normality resumes as time goes on.

[Gnarli in reply to Neonkittie17]

Thank you. Six years in and and still on 17.5mg metoject but I'm managing to have a less restrictive diet.

[Neonkittie17 in reply to Gnarli]

ahh didn’t realise sorry you’re still on Mtx. I hope there are some things you can still taste normally. 🙏🏻

[mogs231 in reply to Gnarli]

this was months ago..but still cant face rich foods...they should warn people about the side effects! especially as I need not have had them at all!! needs more research before they start dishin out meds..apparently my blood tests were all ok (seemed like every week) and it wasnt until a senior consultant checked ALL of the bloods etc because they were going to start giving me injections!! he told me NO WAY!! and stopped all of the meds apart from pain killers,,and said I may have fibromyalgia,,what a complete wast of my and hospital staff time and effort!!fgs

[Gnarli in reply to mogs231]

You poor soul. It's bad enough to deal with a RA diagnosis, it's horrible to deal with serious meds like MTX but for something you don't have! Words fail me! With any luck, you will find that the nasty effects from the MTX will wear off so that you can start enjoying life again. I'm so sorry you've had all this rubbish going on

[Neonkittie17 in reply to mogs231]

Mtx has been in use since the 50s for cancer and more so for RA since the 80s and it’s been associated with/mlre talked about re the metallic taste for those on high doses for non RA use, but yes the rheumy could/should have made that more clear re the taste alteration and of course associated problems. I am sorry for your awful experience and wrong diagnosis. 😢

[Runrig01]

Sorry to hear, and hope it resolves soon. I’m confused what they based the RA diagnosis on. There must have been something for them to suspect it. Many patients are negative for rheumatoid factor or CCP and sometimes don’t show the inflammation in their bloods. Apparently 60% of RA patients don’t have raised markers. So normal bloods alone should not rule out RA. The fact he’s senior makes no difference. I have a friend who was denied biologics because he didn’t believe she had AS, despite 4 other rheumatologists saying she did, and MRI confirming it. He was the senior, this went on for 4yrs when she filed a complaint and they found she did in deed have AS. Not before she had to give up her career. So I would check what did they base diagnosis on. I find it hard to believe any Dr would start such strong medication without any evidence. I worked for the nhs fir 34yrs, and drugs like this they are very cautious about prescribing. I wouldn’t just accept what he’s saying. I assume you had X-rays or scans, I would be asking for copies of the reports.

[helixhelix in reply to Runrig01]

I agree.

The initial prescribing doctor must have had a clear reason to diagnose and give you MTX. Many people are sero-negative, which doesn’t mean they don’t have it. But diagnosis is not just on blood tests, but an assessment of symptoms you report, physical exam, familiy history and hopefully some kind of imaging.

The other possibility is that Mogs does have RA, and the fact of having taken MTX has put it into remission which is a very few cases lucky is permanent!

[OldTed60]

I’d be a bit wary about this change in judgement and the taste thing with methotrexate too. I was misdiagnosed with seronegative RA many years ago - had horrible bitter taste in the weeks preceding onset of joint pain which thankfully went away. Then came RA and years on various meds including sulfasalazine, methotrexate, Hydroxichloraquine and Azathioprine. By then it became obvious to me that I didn’t have RA but had some kind of issue affecting my hands and my nerves. I’d also developed Raynaud’s and neuropathy.

I quit the meds with my rheumatologist’s approval and moved away to a different part of U.K. Then followed rollercoaster of hand swelling, neuropathy, headaches, gut issues - couldn’t bear red meat, all fibrous food started giving me serious gut pain. Finally got referred to new rheumatologist by a GP who kept finding very high inflammation. To cut to chase was found to have overlap of Sjögren’s and systemic sclerosis and now have scleroderma gut which means my gut is paralysed due to fibrotic changes from disease of same family but much rarer. Still get hand swelling and have nasty taste 24/7 either on or off DMARDs and others.

So all the time I’d blamed the rheumatologist and methotrexate for destroying my sense of taste by misdiagnosing RA - but it turned out to be Sjögren’s and scleroderma gut so he wasn’t far wrong and same drugs anyway. I don’t miss red meat or meat in general but I do miss vegetables, bread, spices and cheese a lot - but not the consequences of eating them!