New to rheumatoid arthritis

Hi

my name is Mike and I’m 56 and have had RA since I was 33.I was initially on azathioprine which is not really used for RA today but it worked ok for me and in 2009 I went into remission and stopped all medication.All was good until 2018 when my mother died and it came back really severe and I was put on methotrexate and sulphazaline and it’s now under control

I guess for me it’s been up and down and fortunately never too crippling and my life has been reasonable ok

There are good treatments and good rheumatologist and you can be optimistic about the future

I do get down sometimes but it’s so important to be positive and not feel sorry for yourself because you’ll only feel worse

I wish you good luck and hope you get improvements with treatment

Thank you Poppyjane very much appreciated. I will certainly welcome & appreciate all advice available. Still working it through as is to be expected. Thank you for reaching out. It is very kind of you.

Lau

Hello Lau,

It’s difficult to say how you RA will affect you. I was diagnosed aged 36 in 1987 and for many years I was well enough to work, ride a bike and walk for miles. Now I’m 70 and also have OA and Osteopoosis. I can barely stand and need a Walker to get round. I hope the Hydroxy helps you. I take Leflunomide, MTX and Prednislone, along with Fentanyl patches and Oramorph. May I wish you well.

KatleenT

Hi I’ve been diagnosed with rheumatoid arthritis I’m currently taking codine and naproxen for pain and I’m taking Hydroxyquine.I have never felt so Poorly I’m due to start taking Metratrexate also.I have pain every day the pain and stiffness is in my fingers,wrists,knees,ankles,shoulders,toes under my feet and also my jaw.I feel so unwell I’m extremely exhausted I look pale my eyes are so dry.I have no energy to do anything.when I had some scans done the rheumatologist said I also have lots of inflammation in my tendons also.will I ever feel better?is there anything I can do to start feeling better I’m desperate to feel ok again.

Hello Everyone I have just joined today as well I have been diagnosed with RA at the end of June so still coming to terms with it I am taking hydroxychloroquine and Ibrufan the hospital has mentioned methotrexate but I am not sure I can’t use lbrufan long term I am lucky enough to still be working just now and hopefully it continues I am just worried about the side effects from methotrexate so glad I joined this group the information is great

Hi. You say you were diagnosed earlier this year but are still only on diclos. Were you actually diagnosed by a rheumatologist? Or by your G.P and now waiting to see a rheumatologist? If the latter then I think you should ask the GP to hurry them up. If you have already seen a rheumatologist I do 't understand why you've only been given an NSAID. Are you waiting for the necessary tests before DMARDS. How long have you been waiting?

By the way, your post isn't miserable, just straight. I hope you can get something happening soon.

Hi @Saw74 , just under a year ago I was in the same place you are now. Please note @stickywicket ’s response carefully, there’s loads of experienced wisdom there. The key to managing RA effectively is getting it diagnosed early, and treated hard and fast, ie, no half measures. The longer you leave it the worse it gets and spreads from your small joints to larger ones.

I was diagnosed later than desirable, and I hesitated with hydroxy & methotrexate (MTX) at a time when covid was still rampant. However I eventually did go on it and am on the max UK dose, I take 15mg at night and 10mg in the morning each week, split to reduce the overwhelming nausea. A day later after the MTX has done its thing, I take folate or folate containing foods like leafy greens eg romaine lettuce, oranges and spinach or take folic acid tabs to stop the nausea or mild mouth ulcers. Sounds horrible when you read it, but its loads better than being in pain struggling with any movement or opening lids.

I also found dropping legumes reduced the pain of flare up intensity. Since last February my pain is mostly gone with just a burning sensation occasionally to remind me I’m not cured, but my strength has returned and no longer need my walking stick or can & jar opening devices, this I attribute to getting medicated effectively just in time before too much irreparable damage gets done to the ligaments holding the joints together.

I also turned veggie, which seems to help as well.

Under NHS NICE guidance (NG100) your GP is supposed to refer you to a hospital rheumatologist promptly and they need to see you within 3 weeks of a positive ACCP test, which is quantitative and steadily rises with untreated RA, so gives an indication of how aggressive it is when you start treatment.

Please see a rheumatologist ASAP, and get yourself started on meds.

All the best

Hi @Saw74 and the rest of the group

I'm in a similar position, have been struggling with joint pains now for 19 month having initially fought to get a referral from my GP (they pretty much stopped doing them during COVID). Have seen orthopaedic consultant who said bloods show inflammatory markers and suspects inflammatory arthritis as a result of COVID so am now on another waiting list. I'm taking paracetamol and diclofenac but experiencing side effects such as dizziness and fatigue. Hoping to be seen and diagnosed soon but not hopeful as I've recently found out my maternal grandmother had RA and I'm only 50 and had surgically induced menopause to add to that list. Also an NHS employee but not feeling very supported by work management. Feeling rather fed up but pleased to have found this page.

Hi all, I have RA, I already had arthritis in my spine, my legs but then my hands started to lock, I could not move my fingers first thing in the morning and it takes time for my legs to wake up and I now need help getting in and out of bed I've already had a double heart attack and then a stroke it just seems one thing after another I'm fear of my electricity and gas bill coming through the door my bills was £170 this time last year a month what's it going to be now I've already cut down on food I have one hot meal every 2 days I have some digestive biscuits 2 times a day the £150 we got off the government was a joke and this £400 is a joke my bills this year are 3 times of what they were last year and the energy companies are getting away with holding us to ransome Conservatives don't care all there heating bills are paid for even £300.000 for one MPs horses to be heated in the winter they don't pay gas or electricity so they just don't care I can't afford to buy new batteries for my disability scooter there £900 how the hell they came to this I will never know I have not been able to afford to charge them up since march last year so now the £900 batteries are dead it stinks