Hi new member here seeking advice.

[Frankiefocus]

Hi everyone, glad to see this forum as I could do with some answers...

I used to Dj back in the 90s and the load music must have damaged my ear drums as this tinnitus has been with me since around 2005. It comes and goes and its not actualy a ringing in my ears more of a hissing noise in the middle of my head ...really wierd. If I drink coffee or tea or smoke a cig it goes mad...so I have stopped all that about 3 years ago as I was diagnosed with rheumatiod arthritis.

Now the real problem is I have to take methotrexate (DMARD) and Naproxen which is a (NSAID) and it makes the tinnitus get worse.

I am now noticing that when I'm busy through the day its low but when I retire in the evening to watch a bit of TV or read its really loud and waking me up in the morning around 4-5 am.

I have tried ginkgo and magnesium with no joy and my doc just tells me theres no cure...any advice welcome please.

Thank you.

[Kalimers65]

Hi Frankiefocus I too am starting methotrexate ( taken first dose tonight , slightly nervously). I haven’t got any advice re tinnitus but thought I’d give you my experience of Naproxen. I was on it , on and off , for over 3 years until doctors were worried about my haemoglobin . I was told to come off it and within a few days was feeling better in myself although more achey. In Greece you’re only allowed to be on it for maximum 17 days.

I hope others will be able to advise you on tinnitus- it sounds very distressing, especially waking you in the early hours.

[Frankiefocus in reply to Kalimers65]

Hi Kalimers thanks for the reply, I will be thinking of calling my rheumatologist about the naproxen as it is not good long term. Hopefully try another drug but when it comes to methotrexate I can tell you that if your on tablets and they make you nauseus or bad guts ask for the pen injection as it far better. I take my injection on a Sunday night just before bed to sleep of any groggy feeling that it brings. On Sunday before the injection I make sure I eat a large dinner with plenty of water all day. The extra water helps. It will take 4-6 weeks for the methotrex to kick in.

[Kalimers65 in reply to Frankiefocus]

Thanks for the tips Frankiefocus. I’ve had the worst flare of over 30 years of RA. My GP thinks it was caused by having my first ever flu jab early March. Apparently the dr said, ‘ it was a known risk for people with RA.’ Nobody told me and I certainly wouldn’t have had the job if I had known . Pre March I was doing really well. Now I can barely walk. Fingers X for methotrexate.

[Frankiefocus in reply to Kalimers65]

Thats news to me also as I was never told I could flare after flu jab. I got mine 2 months ago...all ok so far. My first RA pains were in my knees and finally got so bad I could not walk. My doctor was useless and could not diagnose it so I paid £200 to see a private rheumatologist. Best money I have ever spent. Within 2 days I could walk again with a steriod shot and put on MTX, sulfasalazine and hydroxy. That was nearly 2 years ago and I have sorta weened myself of the tabs as they dont agree with me and have been on a plant based diet with a bit of fish for protein. This diet works so well if you have RA if you can stick to it and the shops have loads of plant based foods now. You need to find out what your arthritis trigger foods are (make you flare up) My trigger foods were sugar, gluten and alcohol so I also cut out . All this has lowered my ESR CRP. Give it a go its worth it.

[Hidden in reply to Frankiefocus]

Hi ! My sympathies to you !! My tinnitus is dreadful at night whereas in the day I can ignore it !! I find listening to water/river sounds helps at night ! There’s loads of these on YouTube 😊I tried acupuncture which did help for a day or 2 but expensive to keep up ! I am now trying Lenire which is a tongue stimulation and sound system !! I’ll keep you posted if I get any help from this I have only started !! The very best of luck to you !! It’s such a depressing condition!! Frances

[Frankiefocus in reply to Hidden]

Thank you please keep me posted.

[Kalimers65 in reply to Frankiefocus]

August 2019 I too went about 80% vegan and my CRP dropped from 99 in Aug to 12 in December 2019. I felt so well - no pain or stiffness . I cut out alcohol and coffee as they are acidic. I haven’t really missed them.

Then in early March this year I was persuaded a flu jab might help with giving some protection with the virus. 3 days later my knees were painful. Now it’s both heals, knees, hips and the tendons in my neck. The worst flare I’ve ever had.

I’ve had RA for nearly 30 years and I’ve been blessed with remissions. Two remissions were triggered by getting flu which seemed to kick start my immune system working normally. Each of those remissions lasted 3 years.

I’m on Sulphasalazine and hydroxychloroquine. I don’t think Sulphasalazine has done me much good and hydroxy is week 8 so may be at week 12 something might happen. This morning when I woke my right big toe had no pain so may be my first dose of methotrexate helped a bit. Even that big toe feeling better is an improvement!

I hope your tinnitus improves.

[Frankiefocus in reply to Kalimers65]

Thank you it sounds like your on coarse, maybe no more flu shots. Keep me posted. pS I have been booked into seeing an ENT nurse soon for the tinitus so fingers crossed.

[Kalimers65 in reply to Frankiefocus]

That’s good news. I hope things improve for you soon.