Change of diagnosis

I’ve been on hydroxychloroquine for 20 years and I don’t remember one negative side effect. It’s a very old drug that was originally used for malaria, but it is given for diseases like lupus and rheumatic conditions. I’ll be taking this drug for the rest of my life.

Thank you for the feedback. Searches on it say it "might" prevent flares. Have you found it does? What benefits have you had from taking it?

My neighbor has a connective tissue disease and takes hydroxychloroquine. It gives her back her life. She is the mother of 4, 2 are still at home and the grandmother of 1 plus one on the way. It does have significant scary side effects and I know you will do your research before reaching your decision. I am so sorry this has happened to you. I know you have been active in this chat room for a while now. I wish you a successful new medical journey. Please keep us posted. This could be anyone' s story.

It's good you're on such a low dose of prednisone. I found 2 mg to be almost as good as zero.

Every time I see a rheumatologist they come up with something new. Last year, I was told I had gout. At least your rheumatologist removes something from the list before adding something new. My rheumatologist just keeps adding more things to my list of medical problems.

Raynaud's almost got on my list. Nothing happened after the referral to a vascular specialist. I saw a response from the vascular specialist directed to my rheumatologist. The note said something about my medical records were reviewed and in the context of autoimmune disorders the referral was declined. Other than my hands and fingers feeling very cold and my feet turning purple once in awhile, apparently it doesn't change my treatment. My understanding is that Raynaud's is a common symptom of many autoimmune conditions.

I used to get trigger fingers all the time. I had some released by an orthopedic doctor when I couldn't do it myself. Now that problem is called a "history of" trigger fingers.

I just had an MRI of my right knee because of the concern for a neuroma. The MRI report hasn't been released yet.

They already know about the extensive amounts of heterotopic ossification around my knee replacements, They say that was caused by inflammation and abnormal healing but it is best to leave the extra bone alone. The X-ray report said myositis ossificans was likely because the bone is also in my quadricep muscles.

That's right. He didn't want to risk a flare below 2mg that would require a rise in dose, increasing the cumulative dose of prednisone and losing the progress made. The xrays showed no arthritis but blood rheumatoid factor was elevated. He mentioned Lupus when he saw the rash. He seemed to know what he was on about.

It's a relief in a way that I can stabilise on that low dose for a while and be done with the worry of further reductions. Now I can concentrate on exercise and improving general health.

"Every time I see a rheumatologist they come up with something new. Most recently I was told I had gout. At least your rheumatologist removes something from the list before adding to the list."
Hahaha! I needed a good laugh. The silver lining for the day.

Hi @megz, Mike @dadcue brought a smile to my face also, having had my first adventure with PMR start with a hefty dose of gout in my right foot. If you haven't already looked for other discussions on the new diagnosis, here's a list of discussions and comments on connective tissue disease - https://connect.mayoclinic.org/search/discussions/?search=connective%20tissue%20disease.

"It's a relief in a way that I can stabilise on that low dose for a while and be done with the worry of further reductions."
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After 12 years of tapering, I had taper fatigue and taper anxiety too. I stayed on 3mg for 6 months without tapering. I liked the 6 month taper reprieve. After 6 months, an endocrinologist said to simply stop taking Prednisone without a taper because my cortisol level was better. Maybe you will be able to do that too.

I hope Plaquenil (Hydroxychloroquine) works.

Plenty of reading bookmarked for tomorrow. Thank you, John.