Rheumatoid arthritis.

I am truly sorry for all your medical issues.
I am curious what you use for your lichen sclerosis?
I have had this autoimmune disease over a year now, tried various creams and have very little relief.

Wow, reading your stories are unbelievable. I am 78, walking 2 miles one day, not able to walk to the bathroom. Went to primary Dr, gave me 5 prednisone and did bloodwork. Prednisone did the trick, pain from 10 to 3. I always been pretty healthy so this was a shock, everyday I would wake up thinking it would be gone as fast as it came, nope. Bloodwork, high Rf and ccp, Off to the Rheumatologist, looked at my knees, where most of pain is and at that time only area. No, you don’t have RA, took more blood for more testing, waiting. I did fall in my vacation in February still hurts so went to Orthopedic just to check it out. He looked at X-rays blood work and said yes you have RA, ugh. Now pain in shoulders, and wrist but not always. Knees bad. They gave me another Rheumatologist to go to, just need a diagnosis. PA said ask for hydroxychloroquine, least amount of side effects. Might effect eyes, but I am blind in one eye, scared. Oh, I have been diagnosed with BE and MAI, stable. Any advise greatly appreciated, living on aleve.

If they put you on Plaquenil they will ask you to go for eye tests every six months to check for macular degeneration.

I've just had this argument with my rheumy. By the time damage to your eyes is seen on scans there will already be damage to your colour vision. By the time damage is done not only is it impossible to repair bit of can continue AFTER you have stopped taking the drug, sometimes for many years or many years after.

I got color changes in red in the middle of my vision and I have refused to take any more.

7.5%, I in 13 people will have changes on scans at 5 years. But the time you see it on scans, it's too late, the damage is done.

I am partially sighted in one eye, I would refuse to take it if I was already blind in one eye. The risks really are underplayed, I think they hope you die of old age before the true effects come through.

I would rather be in a wheelchair than unable to see well enough to drive.
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Omg, Thanks for info, I am old but not dead yet. Seems as soon as they see how old you are, they throw pills at you. Going to Rheumatologist Wednesday, hope I get a diagnosis at that time. Maybe, options to get thru this.

In the UK a clearly out of range anti-CCP blood test result is an automatic referral with rheumatoid arthritis diagnosis and would get you put straight onto hydroxychloroquine and methotrexate.

I'm waiting for methotrexate, 2 months before the pharmacy will talk to me but meanwhile I'm having some really decent reactions to MSM and licorice, both antiinflammatory. (You can't take licorice with steroids).
I'm adding turmeric and Cats Claw this week (both anti-inflammatory but CC is also anti TNF, which is part of what methotrexate does).

I'm going to retest my own bloods in September and if my markers are down I'm going to refuse the MTX, it's as nasty a drug as HCQ, just in different ways!

I'll go on it if my bloods show that I need to, though, I have vasculitis that's having a nibble at my kidneys and blood vessels and that needs keeping at bay.

Good luck Wednesday

Thank you, I am becoming a different person without a definite diagnosis, I hate it. My ccp was 230, I guess I wasn’t in enough pain, am now. Trying to stay positive.

While you are self testing run a Sjogren's panel. I am not a dr. but had several autoimmune diseases and a few of your symptoms sound suspiciously like Sjogren's. Good luck.

Oh, sorry to hear about your struggles! Autoimmune whether it’s rheumatoid arthritis or undifferentiated, connective, tissue or many others is difficult to pinpoint. I had my right knee swell up, leading to exploratory surgery and a synovectomy, which is classic for rheumatoid arthritis. However, it was 10 years before I had any indication in my blood work for 10 years, my ANA was negative; my RA was negative. Now,they call it serum negative RA. Unfortunately, it sounds like you’re in an exacerbated state right now. I wouldn’t advise gardening or anything like that flares your present circumstances. You need to do passive range of motion, use ice through a cheesecloth 10 minutes on 10 minutes off, swim, and then get yourself some soft hand and maybe arm immobilizers for sleeping at night. Walking is very therapeutic just a little bit of exercise each day twice a day and decrease any stress in your life. My exacerbated state was a while ago and it was rough. My left hand is permanently deformed, but there is hope! Right now, I’m not on any medication. I haven’t been in pain for a number of years. I do use compression, gloves, compression sleeves on my arms and compression on my knees and lower legs whenever I have an exacerbation. I am living my best life and I pray that for you soon too. Kay🌺

Thank You Kay, I am definitely in a full blown flare. Both knees, right wrist, both shoulders. I haven’t gone to Zumba class in months. Go into pool and do some work out but doesn’t take away the pain. You have found a system that works for you, that’s great, I hope I do too. Do Doctors help you or just give pills? Trying to stay away from heavy duty pills but the pain is getting to me. New RA Dr Wednesday, hope he is the one that can give me a diagnosis.