MTX and Cimzia - Labyrinthitis

[teresa2711]

Hi everyone. I have a question for all MTX and Cimzia users. I’m into my 3rd week of having Labyrinthitis of which I was stuck in bed for 2 weeks. I got over the sickness after the first week but the dizziness has kept me indoors along with deafness and headaches I feel totally exhausted all the time. On top of that had a massive RA flare which hasn’t helped. Has anyone else experienced this illness as there is some suggestion it’s connected to long term use of MTX and how long does it take to get back to normal. I’m getting so frustrated now as it’s so debilitating. Sending hugs to all you sufferers.

[pip12]

Hi Teresa. I had a really bad do with Labyrinthitis a few years ago and my heart goes out to you, it’s a horrible thing. When I started with it I thought I was having a stroke, the dizziness is frightening, never felt so ill in my life. The doctor came out and prescribed tablets but cannot think the name of them now. It lasted two to three weeks and I have never had Methotrexate ever so I cannot blame it on that.

To be honest, I have been having a really bad flare since Christmas and thought it was coming on again about two weeks ago. Started being a bit dizzy again but it seems to have settled down again now thank God. I put it down to just another horrible condition caused by the RD.

Hang on in there Teresa, It will eventually go. I know when you are suffering it, there never seems to be any light at the end of the tunnel, but there is and it WILL go.

Just a shame the RD doesn’t go with it. Sending gentle hugs and hope you are feeling better soon xxx

[teresa2711 in reply to pip12]

Thank you for the reply much appreciated x

[pip12]

Sorry Teresa, meant to say never had Methotrexate OR Cimzia ever.

[AgedCrone]

Poor you!

I first had Labrynthitis before being diagnosed with RA & I hadn't even heard of Mtx let alone taken it! So it definitely didn't cause my episode.

Labrynthitis is a virus.....very common in children...& as you up have found out in adults it is really debilitating.

But stop worrying it does clear up ...but the timescale seems very flexible & differs with everybody.I found the first time I was off work for a month.

That was 20 years ago & I have had it twice since, when it lasted about three weeks & wasn't nearly as bad as the first episode.

Unfortunately I think the only thing you can do is check with your rheumy nurse if you should continue taking the Mtx whilst you are still feeling under the weather....then taking it easy & waiting for it to pass is the only answer I know of.

Really hope you feel better very soon.

[teresa2711 in reply to AgedCrone]

Thank you for replying. It’s nice to speak with people who have experienced this awful illness.

[Kai--]

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Kindly consider, Hazel’s experience ( nhs.uk/Video/Pages/Labyrint... , nhs.uk/conditions/labyrinth... ), teresa2711. May be some useful bits in there? 🤔

Labyrinthitis and Vertigo (BPPV): Hazel's story:

m.youtube.com/watch?v=aFe4K...(Not working as expected?)

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Wishing you speedy relief, teresa2711. 🙏 🍀 🌺 🌞

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Aside: You’re in good company, teresa2711, Ronnie Corbett also had Labyrinthitis. 😳 If you google search "Ronnie Corbett talks about his battle with Labyrinthitis", you’ll hear a bit of his experience. ☺️

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[teresa2711 in reply to Kai--]

Thank you that’s very helpful