Hi, this is my first time to post on this forum although I have been reading here quite a bit.

My story is a little long, so I am going to try to shorten it. in 1995 I was dx with fibromyalgia. In 2007 I was dx with Primary Sjogren's. I began taking hydroxychloroquine for the Sjogren's (pSS). I have always experienced a lot of pain due to fibromyalgia and pSS over the years. Off and on I would experience burning feelings in my skin. That too was attributed to fibromyalgia. I began to feel like fibromyalgia (FM) was just a 'catch-all' dx for anything the doctor(s) could not explain and they never really told me how pSS would affect my body. By the end of 2018, the toes on both of my feet were burning and numb feeling at the same time and I felt like something was happening. I also have Essential Tremor and it has been a lot worse this last year. So I went and found a neurologist.

The neuro said that Sjogren's is causing the peripheral neuropathy and he gave me some material to read about it. About that time I came off the hydroxychloroquine because it was felt that I had been on it an extremely long time. So I came off the hydroxy in Feb. of this year. In the ensuing months, I feel like the PN is worsening pretty quickly considering how long it took for all my toes to feel numb. The sides of my feet and the bottom of my heels sometimes feel that way now too. But what I'm most concerned with right now is my upper body. I feel like I have that hot/cold feeling in my hands and arms and even 'inside me as well. When I breath it's like a nauseating feeling of hot/coldness with slight burning and then a feeling of tiredness. It's hard to explain and I hope it makes sense. Does anyone else have an experience like this or know anything about what I am experiencing?

With pSS there is a greater chance of having some type of lung involvement and it worries me that that is what may be happening.

Has anyone taken hydroxychloriquine for more than 12 years? I know the longer you take it the greater the chance for retinal damage, but what about nerve damage? Now that I'm off the hydroxy I wonder if it will work a second time. I know the FDA says that quinine doesn't help neuropathy, but I have heard two people with firsthand knowledge say that it worked for them and one was a pharmacist. Hydroxy is made from quinine. I wonder if it is just a coincidence that my PN has worsened this year just after I went off the hydroxy.