Can I ask if anyone else has had any problems from Tinnitus since taking Methotrexate ? I have taken Methotrexate for just over 5 years and have developed awful Bilateral Tinnitus, and it's driving me insane, they have admitted that Methotrexate can be the cause of Tinnitus but are arguing that the effects would have been felt soon after starting mxt, but I have read online that it is the case that Tinnitus is one of the side effects that only becomes apparent after a moderate length of time of taking it.
My audiologist has asked me to go to my rheum team and discuss any other alternative drugs that I can take instead of mxt, or to try a trial without mxt and see if there is a difference, but did warn that now Bilateral Tinnitus has been diagnosed, nothing will stop it, I will only be left with a diminished noise. I now have 2 hearing aids which play music or background sounds to mask the noise, but would prefer to see if a change in meds may be more beneficial.
My problem is that I have now been off mxt for nearly 3 weeks and my knees are so bad I can't get up the stairs, my joints are screaming at me and I am so tired I feel completely useless but the noises in my ears have lowered. When I finally spoke with a nurse about options she said "mxt is working for you, why do you want to come off it ? What do you want, it's a little bit of noise, but your body is working, you choose, noise or agony" and now because of this I am apprehensive about telling them that the reduction of mxt in my body, although causing agony in my joints is actually lowering the noise from the tinnitus.
I have never read any posts regarding this, but I am hoping someone can offer their thoughts or advice.
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AlleyJ
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I’ve not heard mention of this, I’ve been on mtx 25+ years but it was hydroxy that caused my tinnitus. It didn’t diminish when I stopped hydroxy but I have got used to it although it does vary in loudness. Not much help I know but sometimes we do have to weigh up benefits versus side effects and as the hydroxy was working for me and the tinnitus was here to stay I carried on taking it.
I can't wait to restart the mxt, my body is so painful, it has proved that it is the route cause, or at least, makes it so much worse, but yes, I choose a pain free life over noise all the way
I have tinnitus and I find it distressing. I also have hearing aids with a masking function that ameliorates things, but it's still very intrusive. I believe it predates the MTX but it's not certain.
Nurse sounds callous Tinnitus can be debilitating I have a milder form but have various stuff going on Methotrexate appears to have lowered my thryroid function so focus on that subclinical thyroid at moment.
So true. I couldn't believe what I read. How can a nurse be so dismissive and say such a thing???!!! So awful. We are human beings. I wonder if they forget that sometimes.
I would have lost it for sure. I don't understand why anyone would behave like that. It's just nasty, cruel and very hurtful. That's the last thing you need when you're already in distress. Wholly unacceptable and it leaves a feeling of being totally let down.
You're welcome. I've been in a similar situation and I know how much it hurts. You are never wrong for asking for advice. It's your health and she had no right to diminish the importance. She needs to do better. Wishing you all the best. Take care 👍
As with KittyJ - MTX did not affect my tinnitus (which I had prior to starting MTX) but hydroxy certainly made it worse. The nurse was not helpful and obviously doesn't understand tinnitus
She really doesn't understand, and no she wasn't helpful at all, but 3 weeks off mxt, luckily I have the answers now, I can't wait to get back on my mxt
The nurse sounds awful. There are alternatives to Mtx. Can you contact your consultant through their secretary and state your case for an alternative? Good luck.
This nurse really isn't a people person, she was rude and abrupt and when your ears are screaming at you and all you ask for is advice, it truly hurt me if I'm honest
I'm so sorry you were treated like that. Why be a nurse if you're not a people person. My uncle suffers with tinnitus and sometimes it's so bad that he can't do anything for days. You're suffering and she's talking to you like that and causing you even more distress. Where is the compassion?! My goodness. I truly hope things continue to improve for you with the tinnitus and the pain. Have you ever tried acupuncture to treat tinnitus?
I recently had a course of 12 weeks of Methotrexate and then changed to the injections. Suddenly I’ve got Tinnitus, the Consultant said is was probably due to the Methotrexate. I’ve stopped it now, it’s improved but not gone away!
My audiologist said coming off mxt wouldn't fix it, unfortunately once here, it's here to stay, I wish they made this side effect more widely known, it's awful
I have it , mildly thank goodness, i think its due to the mtx as its worse the day after the injection. But I also think it may be the sulphasalazine. . Or the combination of the 2 drugs together. 🤷♀️Best wishes, i hope you get it sorted out .
I also found that it was much worse the day after the injection, I see a few people mention Sulphasalazine, this was the alternative I was offered, yet it also has this side effect, crazy
I got it to. I blame the drugs. Really doctors don’t take it seriously but it is awful. At night when I wake I feel like I’m in a space ship. I’m not sure if it will ever go away. So I use headphones to listen to audio books or music sometimes so it blocks it out. Good luck.
I have to go to bed with my iPad playing something to drown it out, when the hearing aids come out it is so loud, and yes, sometimes when I wake up I wonder what the noises are before I realise it's me
My tinnitus started about 4 years ago. Am on methotrexate and hydroxychlorequine. Does anyone else find that sometimes tinnitus affects how you hear words? So much that I have to ask the person to spell it. Was given hearing aids but still found distortion in hearing. I hadn't realised that those medications could cause it.
Hi AlleyJDefinitely, I was diagnosed with psoriatic arthritis and put on 20mg Mtx. Ater taking it for a few months I got tinnitus. Never had it before and this was my first experience of taking medication for psoriatic arthritis. Now on sulphasalazine but tinnitus has remained although no worse.
I was warned by my audiologist that changing my meds wouldn't fix it now it's here, it just may lower the tones of the tinnitus, I guess it's here to stay
I have been on mtx for over ten years and suddenly got tinnitus in one ear I had it checked out but no one mentioned link to mtx at all but I expect it could well be another gift from having RA the illness that keeps on giving! Yes it is a bit of a stark choice noise or agony and again no body has any empathy or time to discuss it with you as to what you feel is the right option for you. Im afraid I have to choose the noise cos the pain is enough even with the mtx.
The nurse just seemed so 'matter of fact', something you'd expect from someone who has never experienced tinnitus and how awful it is, she just didn't seem to care at all, but I agree with you, the pain I am in shows me how important the mxt is for me
yes I seem to have developed tinnitus since starting methotrexate…. Will be raising this when I next have appointment with rheumatology clinic ….I wouldn’t want to stop the methotrexate as it definitely works but tinnitus v annoying…
Exactly my thoughts, I am in so much pain today I can't wait to go back on my mxt, this proves to me how beneficial it is for me, but I am not looking forward to the screeching in my ears getting so intense again
Thank you to everyone who has taken the time out to answer me, I can't wait to go back on my mxt, this pain is unbearable, I will live with the tinnitus using hearing aids, thank you everyone 😊
My tinnitus was coincident with starting Hydroxychloroquine- stopped taking it immediately but of course, too late…….it is still the most difficult thing to cope with- never to experience silence again - to only have memory of that wonderful stillness being beside a Scottish west coast seascape on a summer morning -
I have given up going anywhere to hear live music - impossibly difficult.
The hardest to take is my rheumatologist telling me that it is nothing to do with medications !
I point out the paragraph in notes that says “ototoxic” - this is shrugged off . “You must have triggered it “
I am so sorry to read that so many of us have to live with this side effect as well as all the other stuff ….
Are you taking folate in any form? Methotrexate depletes folate, and folate and B12 work together, along with all the other Bs. A deficiency of either could contribute to tinnitus, and you are generally low in both if low in one. Although it is not hard to rule in a deficiency (if not supplementing) it is hard to rule one out.
Ok, well you could double check your B12 was at a good level prior to starting the folic and possibly think about an alternative form of folate? Some do better with folinic or methylfolate (like me!). Cheers
Cool, I am due bloods so I will ask for that to be checked, it's usually on my results each time so I know my doctor is checking the levels, but I will ask about alternatives if it's below where it should be, thank you 😊
Just remember that you can have a cellular deficiency of either B12 or folate at any serum level. Taking the folic will also alter some of the haematological markers which might have shown more easily that you were low in B12. It is possible that your doctors will not know or spot this, so you may need to do your own research. Good luck.
I was on metho for over 16 years, I started with tinnitus in one ear 4 years ago, then it got really bad in both, it drives me crazy. I had to come off Metho 5 months ago, as I had bad side effects and my tinnitus has since gotten worse, not better x
I was on 25mg Mtx very successfully for 7 years with no sign of Tinnitus…..that only arrived after the AZ Covid 19 vaccinations. ….and that was years after I had taken Mtx.
I have never read of anyone thinking Mtx caused their Tinnitus.Have you asked on the HU Tinnitus site?
I agree that if you are really suffering with the Tinnitus…it’s NOT just a little bit of noise. When my T first started it drove me crazy…but I had other side effects from the vaccines & I didn’t connect the two, but as the other side effects faded…so did the Tinnitus….I now only get strange clicking noises occasionally, & sometimes I think I have left a radio on in another room…but now I know what it is I can ignore it……but the noisy buzzing noises I had originally were not something I could have put up with.
BUT……If you decide to come off Mtx…..& then the T returns…sometimes a Dmard that originally worked well, …..doesn’t kick in again if you re-start it.But different people have different tolerance levels…I do hope you find an acceptable solution soon.
I'm sorry you have tinnitus. I was fortunate not to develop this. Are you able to swap the methotrexate for another drug, or ask to see if you can try biologics?
Audiologist said my tinnitus was likely caused by RA damage to the three joints in the inner ear. Failed out of Methotrexate very quickly several years ago.
my tinnitus predates the methotrexate. I have read meds like aspirin, ibuprofen, Tylenol etc can cause tinnitus. After taking for so long it kills the fine little hairs in your ears. It doesn’t affect me too much unless I try to listen to it..lol When outside doing yard work or walking I never hear it at all. TV overcomes it, conversations with people or music. While texting now it’s there. No I do not put hearing type things in my ears to overcome it.
If your pain is that bad I would go back to methotrexate.
I have taken methotrexate and hydroxy for about 7 years and noticed tinnitus in the last couple of years. At work our Occ Health practitioner asked me if it was worse when I was stressed - and I realised for me there is a correlation to stress. He has tinnitus too and he said this was because focussing on something that is bothering you allows the noise in because you cut out other thoughts and distractions... so when my tinnitus gets worse I work on dealing with the stress - plus exercise, activities and it recedes. But I don't think it is ever going to go away....
How awful of your Rheumy nurse to say that to you! I hope you took her name and made a complaint! I have tinnitus (undiagnosed) but the noise isn’t that bad, just a fizzing sort of sound. I’ve never made the connection with it and methotrexate, (I inject 25mg a week)
I would speak to your rheumatologist and ask them if you can try something else, there are definitely other medication options for you.
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