I was last on here in January, after seeing the Rhumey and he says my lupus isn't very active, and don't come back unless Gp says so...I always wondered if i ever even had Lupus but that's a long over lapping story...He had me on the meds, but he kinda gave meds, asked questions later kinda guy...I in beginning had the funny ANA.... & very mild knee pains...OK....not much sleep last few days, getting ready for Easter, and visiting daughter....I noticed my left knee super stiff...(I do ballet plias' for stretching, so thought i messed it up that way)....BUT, then my left thumb near the base joint bit, really started hurting! Ive had that thumb hurt tiny bit before, but not like that!!! It hurt for like good 5 days off and on, but mostly on, and very ouchy....(No swelling look, no deformed look).... Extra Strong tylenol wouldn't even touch the pain....its very damp and chilly where my daughter lives....Ive had a real good sleep, and it seems to have gone for now....Im also slightly over medicated on thyroid meds, and have been off and on for some years, i noticed looking over my records...GP don't seem to say much....I sometimes wonder if this could have been the trouble from the start.....Menopause started all that bouncing of thyroid, and im sort of past that, but prolly not totally...I was hypothyroid in my 40's, but meds kept it normal...almost 60 now...To you with the joint pain etc...my hat goes off to you big time, that is one ugly pain....I never felt it quite like that before...Ive heard there is menopause arthritis, read somewhere thyroid can cause arthritis of some kind, then the Lupus....I had the 1:320 ANA, homogenous and finely speckled back in 2013....and found GP records from 2008 and had elevated ANA, and i think it was just homogenous then(no one said anything)...So, guess i just wanted to touch base here again....I may be back...
Forgot to say...I havent been on plaquinil or anything for 1 year...
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dgleds
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Hi Dgleds. I am in a slightly similar boat to you, only I was diagnosed with RA rather than Lupus in 2011. The pain was very intense back then and I have a high pain threshold. I know from friends with severe, erosive RA that the pain is often unbearable. It has to be if it's capable of eroding and deforming through synovial swelling - like acid burning into the joints and tendons. It's scream worthy pain when it's flaring and generally affects joints bilaterally. However mine was non erosive and I think it was chased off by a few years of Methotrexate with Hydroxichloraquine - which puts me in a small percentage of lucky cured people I guess.
But the fact is that I'd take RA back now in exchange for the relentless uncertainty, dizziness and neuropathy that I have now. Like you I'm hypothyroid and post menopausal. I have read that hypothyroidism can cause arthritis, as can being post menopausal too, and for this reason I took myself off to a private endo ten days ago to see if my thyroid bloods might be out of whack, despite 11 years of various doses of Levothyroxine. He has put me on Lirothyronine (T3) as well now. Too soon to know if it's going to make me feel any better - I just get stiff and achy these days rather than having the fracture-like pain of RA. Maybe I've been consistently under treated for my thyroid disease for many years or perhaps I have a sero negative form of Sjogren's - but I do feel worse now than when my RA was very active.
I see a new neuro next week and my third rheumy in five years within a few months. I'm not expecting them to be able to help me much anymore - resigned to finding my own way through the autoimmunity to a large extent. What I'm quite sure about though is that I do have autoimmunity and that it's a slippery beast which likes to change direction regularly and rarely shows its face in terms of antibodies or visible signs. I have fluctuating inflammatory markers and paired bands in my spinal fluid to prove something is going on. But it's very rare and so I'm unlikely to get real answers I feel. I'm not on any RA drugs anymore either. Take care. Twitchy
non sleeping sure doesnt seem to help, but i guess non sleeping gets weird chemistry going in your body as well....
yes I agree Twitchytoes...its almost like the autoimmune thing plays cat and mouse.....The high dose vit D seem to be helping, so I lowered it a tad....I may need to increase it again...
My Gran had RA, but i tested negative last they checked that....I just have that moderate higher CRP, and the higher ANA and funny pattern...thats all they ever saw...
RA can be seronegative for 30% of sufferers. But yours doesn't sound like RA somehow as different joints affected to those you describe. Oh well good luck to both of us.
Thanks Misty. It's a she I'll be seeing and she's still a registrar i think, not yet a consultant. But that might be a good thing and friends say she's young and very nice. Keeping expectations minimal to avoid disappointment. Happy Easter to you too🌷🐣🐰🍫x
Funny you should say that...Best Gp I have ever seen, was a student doctor that was passing thru our town....This fella listened, and knew his stuff....He was genuinely interested...
So far the most unexpected people have been brilliant - from podiatrist and physio back in our island home, GPs there at times and most recently an oral surgeon - and a young chap (junior dr) who looked like Johnny Depp in hospital last year and a professor of connective tissue diseases a few years ago. Oh and a final year medical student in August, who told me what paired Oligloclonal bands meant and shook my hand and said it was a privilege to speak to me because she had learnt loads. How lovely was that?!
The ones I have expectations of invariably disappoint! Twitchy x
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2017 and difficulty when my rheumatologist retired 🤦♀️
Positive dsdna, then negative and my rheumatologist says I don't have lupus...
Anyone had change in ANA pattern? Mine gone from homogenous to negative to speckled
