Needing advice on hydroxycholiquine

[TillyO]

I’m in a quandary... diagnosed with lupus sle in May the year. Had a lot symptoms with joint pain in my wrists and GI issues awaiting polops biopsy results. Been on prednisone 10mg and hydroxycholiquine 200mg tablets

Last visit to RH last week and described more symptoms He’s says it’s more likely Not lupus but something to do with nervous system. I’ve previously asked him can the following to which he said no...

Can lupus be related to hormones - no

Can lupus be hereditary- no

Can a special diet help lupus -no

Are my GI problems related to lupus - no

Are my palms and finger tips going red and burning lupus - no

Sharp pain and tinnitus in my left ear - not lupus

Asked if lupus can affect nervous system- no

I’m literally in and out after 5 mins but I get my bloods and urine checked regularly .

He says come off both tablets and start again. I’m tapering prednisone now and stopped the hydroxycholiquine last week. I’m not really sure how I’m feeling but just not right .. feel jittery, nausea and Not sure I feel worse or no different.

Feeling anxious as to what is the best thing to do

[Spanielmadlady]

Hi TillyO .not sure my experience will help or not as I wasnt on hydroxychloroquine at the time 🤔.nearly 3 years ago I saw a professor of respiratory who thought my health issues were AI and told me to come off the steroids as he thought they were making something.i managed to do so and after about 2 months I went stiff , felt shocking,my lungs flared and i ended up in hospital with pneumonia.it was then they sent me to rheumatology and only then did I get a diagnosis of lupus.since I've been on my treatment plan I've been stable 🙌. Looking back it wasnt a pleasant experience to go through but I could still going round in circles if I hadnt.

Good luck honey I hope you get through it and get some answers xSMLx

[TillyO in reply to Spanielmadlady]

Thank you for your reply. My blood tests all come back with a lupus diagnosis as much as they can anyway. I just need to get on the right meds but my RH doesn’t recognise my symptoms as being lupus which is where there is conflict from what I’ve read all my symptoms can be related back to lupus so maybe I just need to find a different RH as all he seems to be concerned with are my swollen hands and wrists

[Spanielmadlady in reply to TillyO]

My symptoms were lupus but I was told repeatedly there was nothing wrong with me by respiratory at my local hospital who I now refuse to see.you need someone to look at the whole picture not just bits of it so maybe a second opinion is a better option xx

[TillyO in reply to Spanielmadlady]

I think you’re right thanks 🙏 for the advice

[miccika1]

You will probably know soon enough. When i reduced my hydroxychloroquine i started having horrible wrist and finger joint pain. Stiffness. Could not lift a cup. How did you end up with lupus diagnosis in the first place? Was your ANA high? Do you have any autoimmunity antibodies? Did you do autoimmune panel?

[TillyO in reply to miccika1]

Hi ...I got hospitalised With a rash All over my face and body l, a severe migraine and a fever With chest pain. They thought it was Covid but ended doing lots of tests and ended up with a lupus diagnosis And since then I’ve had lots of symptoms. Previously I put many things down to menopause like brain fog, dry eyes, fatigue etc but now I have wrist and hand joint pain, RaynaudS Etc . I also have GI problems which have worsened since hospital and nerve issues too with my hands.

All the tests had so many markers towards lupus.

I’ll just try it and see what next blood test results are and see if the meds have made a difference

[miccika1 in reply to TillyO]

Do you mind sharing ehat particular markers pointed towards lupus? There are many similar AI diseases and it's important to be very specific on which markers are positive and which negative in order to determine proper therapy and prognosis

[Djallen60]

My mom has Dermatomyositis which is rare and before knowing what it was they thought RA, Lupus etc.

Finally helping her with Hydroxychloroquine, and something else. But if she

It’s totally under major stress she breaks out everywhere it’s like chickenpox all over her hands just face net and it’s just horrible pain in her hips and joints. It’s awful. But the Hydroxy Clore Quinn continually keeps her OK