Any insight on autoimmune disease diagnosis and experience of hydroxychloroquine medication

[ForkieForkie]

I saw a rheumatologist a month ago re possible autoimmune disease and found it frustrating. Has anyone has been down this route and can help me understand a little better. Perhaps a bit too specific for anyone to have thoughts on...but here goes!

I have what are broadly rheumatoid arthritis symptoms. Results from GP tests show "strong positive ANA suggesting a nucleolar pattern". (Rheumatoid arthritis negative). At the end of the consultant appt I think the gist was could be the early symptoms of an autoimmune disease, its unclear what. It might become clear as it develops, it might never develop further. More blood tests were ordered, further apt in 2 months.

I am to read up on hydroxychloroquine medication. I'm puzzled at the idea of medication without a diagnosis? Are autoimmune diseases typically this vague. If it doesn't stop any "disease" from progressing am I to consider whether my symptoms are severe enough to warrant medication? My symptoms seem not to have been so bad last couple of months.

If anyone is with me so far I have some questions for next appt I'd welcome thoughts on!

Hello. Rheumatological diseases are shades of grey rather than black and white. People develop autoantibodies years before onset of symptoms. And many with autoantibodies never go on to develop any symptoms. Symptoms and signs may develop until they fit a disease diagnostic criteria. Regardless the medication used will often be the same. The ARUK website has excellent patient leaflets that may help explain this in more detail. Hydroxychloroquine is often used for less severe symptoms is a variety of rheumatological diseases from Rheumatoid arthritis to SLE. There is some evidence to suggest that it can prevent progression to all out disease in some cases. Generally very well tolerated with minimal side effects.

Thanks for that. Really helpful. I won't bother with the questions. I'm trying to pin it down but clearly that's not the approach.

I started off with "undifferentiated connective tissue disorder" which became "lupus like" and now is lupus. It's taken about 9 years to be definite. I take hydroxychloroquine which really helps and I am able to control the dosage if I am experiencing a flare. It's good and flexible.

Thanks honeysicklye. So that fits exactly with the idea of evolving or emerging symptoms. 9 years is a long time. Can i ask, did you have regular check ups during then. Or did you just go back when symptoms escalated?
And did you start the medication when symptoms were still mild?

Good that its working for you.

I have been on hydroxychloroquin for ten years. I have had no problem with it and it has slowed down the progress of the arthritis.

Sorry, don't know what happened with the spelling Honeysuckle.

Thanks for info MrsM.

Hi I was put on hydroxychloriquine after seeing the rheumatologist experiencing severe fatigue, joint pain as well as tenderness and itching on the skin on my back. When I started it the rheum thought I had a viral arthritis but he said whatever was causing it the hydroxychloriquine would help with my symptoms.

About 6 months later, several rounds of the same positives appearing in blood tests and a malar rash appearing on my face, I was diagnosed with Lupus. By that time the medicine had made a huge difference to my symptoms and I'm very stable in my condition now. I go for bloods and checkup every six months now.

It took me over 4 years to get a diagnosis. Rheumatology is the most frustrating speciality i see lol. I have a great consultant now. I have ankylosing sponylitis and query sjogrens syndrome. Before my AS diagnosis I was put on hydroxy. Been on it 6 months now. Doesn't really help the pain but helps with fatigue greatly. But I will be asking for more next appt. Its a positive experience though for me after being untreated for so long.