New member.: Hi, I am Mark, I am newly diagnosed with... - NRAS

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StateOfPlay profile image
19 Replies

Hi, I am Mark, I am newly diagnosed with RA (July 2023). I am also lucky to have Trigeminal nerve pain and Angioedema, so I must have upset someone in a previous life.

I am learning a lot about this illness, and I am now in the hands of the NHS. I take Methotrexate, Prednisolone and Hydroxychloroquine for the RA.

Looking forward to meeting other people here.

Cheers.

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StateOfPlay
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19 Replies
springcross profile image
springcross

Hi Mark and welcome to the forum. Sorry to hear about your diagnosis and the Trigeminal Neuralgia - ouch, you have my sympathies!!!! I hope your drugs are working for you and keeping you comfortable - if you have any questions, there are many experienced people here to answer them.

welsh12 profile image
welsh12

Hi I am newly diagnosed too on Methotrexate and hydroxychloroquine just getting my head around tests vaccines and reading too many horror stories lots of information out there on diet supplements etc. Saw a physio today who was amazing and hopefully can see podiatry for foot pain. Best of luck. Trying to remain positive.

sylvi profile image
sylvi

Welcome Mark to a club no one wants to join. There are plenty of people here with what you have darling. I have had RA for over 20yrs now and since i was diagnosed i have developed fibro and now i have a heart problem which will need surgery. Know your not alone and if you have any questions however silly it may seem to you someone will have an answer for you.xxx

lupus_01 profile image
lupus_01

My husband used to have tri geminal neuralgia so to have that as well as ra is very unlucky.

Jackie1947 profile image
Jackie1947

Welcome to the group.

helixhelix profile image
helixhelix

Welcome. Hopefully the RA drugs are now starting to work for you. Which will be one less source of pain and discomfort!

Jan101050 profile image
Jan101050

Hi Mark I have psoriatic arthritis and have had trigeminal neuralgia. I had many injections to freeze the nerve but it always came back. What worked for me was cauterising the nerve. It’s the most awful pain I have ever had. I wish you luck in your journey.

StateOfPlay profile image
StateOfPlay in reply toJan101050

Thanks for the reply, I hope that you are all sorted now. The Mri scan shows I have an issue on both sides of the face. I am currently taking 2700mg a day of Gabapentin and this is really helping. Apart from the fact I rattle when I walk, I am happy to maintain the drugs as the alternative is surgery, and I don't really want that while I am still trying to get on top of the RA.

Haz58 profile image
Haz58

So sorry you needed to join this group but welcome! Lots of wonderful helpful people on here. If you're not sure on anything or just need to rant this is the place. I hope your meds work fast.

janmary profile image
janmary

Welcome to the forum - hope y ok ur C treatment is helping

helenlw7 profile image
helenlw7

Hi Mark, and welcome. This is a friendly forum. You have lots of issues. I hope you get the help you need.

stbernhard profile image
stbernhard

Hello Mark and welcome to the forum. You'll get a lot of good advice from many people who are living with RA. Another good source of information and help is the National Rheumatoid Arthritis Society NRAS. If you haven't been on their website yet, I would highly recommend it.You'll find answers to many of your questions, everything about the medications and also a lot of self management tools. There's also Versus Arthritis and an app called MyArthritis which I use a lot. Looking forward to hearing from you again. All the best.

medway-lady profile image
medway-lady

I like your attitude and what do you think you did ? My brother did the family tree hoping for a criminal preferably one deported or hung but found they were justiciary so on the bench not in front. I think I might have been really bad but hopefully enjoyed every minute.

thinkhappy profile image
thinkhappy

sorry to hear, I don't know if you have tried amitriptyline for the trigeminal pain , it helps me, I take 10mg an evening , increasing to 20mg when its particularly troublesome. wish you well

StateOfPlay profile image
StateOfPlay in reply tothinkhappy

Yes I asked my GP for amitriptyline as the pain was getting worse when I started on the RA medication. It has really helped.

Stills profile image
Stills

hello, glad to hear your getting treatment and wish you better days

rmros profile image
rmros

Hi. That's some rotten luck. I had episodes of trigeminal neuralgia several years ago - absolute worst pain I have ever experienced, so much sympathy. Hope the RA drugs are working for you at least.

Rosie-NRAS profile image
Rosie-NRASPartnerNRAS

Hello StateOfPlay, sorry to hear about your recent diagnosis of RA. If you would like to speak to someone about your diagnosis or have any questions then please do not hesitate to call the NRAS Helpline on 0800 298 7650, we are always happy to help. We are open Monday to Friday, 9.30am-4.30pm, and if we cannot answer your call at the time, please leave a voicemail and we will call you back. NRAS is here to support people living with rheumatoid arthritis. Kind regards, Rosie @ NRAS

Daisylazy4 profile image
Daisylazy4

Hi Mark,

I was also diagnosed with bilateral TN over 10 years ago and RA in 2021. I was taking Gabapentin for TN but now I just deal with the pain and no drugs. They were making me feel like a zombie most of the time. Have you found anything helpful?

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