Hey folks...been awhile since I posted but have many questions so thought I'd ask and see if anyone has any answers. For the past 4 years my Rheumatologist has been trying to get a complete diagnosis on me, but so far concludes its a connective tissue disease possibly Lupus and R.A.. I'm currently on Prednisone, Plaquenil, MTX, and Enbrel, and am seeing slow improvement with the Addition of the Enbrel about 8 weeks ago. My first question is about intolerance of sun and particularly heat. Since getting sick it's like an internal furnace has been turned on and won't go off. When I get too hot my face, neck arms and chest get red as a beet and stay that way sometimes for hours or days until I can cool off. Coming out of the sun does not help, I still stay red. It looks like a bad sun burn, and my husband says he can feel the heat radiating from me. Is this Lupus, R.A., or some weird drug reaction to heat and sun? I avoid the sun as much as possible even though I love the beach, but even stepping outside to walk to the car on a hot day can set it off. I also find a flare much worse in the heat.
The pain in my joints particularly in the fingers has recently taken on a burning sensation, on top of the usual aching, is this normal?
That's all for now, appreciate any comments or advice.
THANKS MUCH
Becky
Hi Becky,
I don't really know if that sensitivity is from Lupus or the Plaquenil or a combination of both. I know when you are on Plaquenil you are suppose to avoid the sun completely. I am 45 now and have RA, but when I was in my 20's I was suspect for Lupus and would get a itchy/slightly painful rash when exposed to the sun(I also love the beach, and was born and raised a few blocks from the Pacific Ocean). My son has JRA and sometimes is very sensitive to the sun. His is more of an ill feeling imediately on exposure. His Dr feels it is "mixed connective tissue disease" as he has other Lupus symptoms . I once found a book while waiting for my husband in Barnes and Noble that actually had a name for Lupus/RA. They called it RUPUS, it was really interesting as my son and I both have symptoms of both diseases. As you have both it might be of interest to you too. If you google RUPUS, you will probably come up with some info.
You should let your RD know that you are these problems and see if you can get some definite answer. I am sorry to say though I think you need to be staying out of the sun and making sure you are well protected when outdoors.
I'm not sure about the burning feeling in your fingers.....I wish I could be more help.
Have a nice day
Thanks for taking time to reply Pam....I am aware that I need to be very careful of sun exposure while taking Plaquenil and avoid direct sun light as much as possible. With a 4 and a 6 year old its a little difficult to stay out of sun completely but do take precautions. I'm definitely going to look up Rupus and see what I find. I see my Rheumatologist tomorrow so will see what she says about the redness and heat intolerance.
THANKS Again
take care, Becky
Please let me know how the apt goes....I'll be interested in what your RD has to say about these symptoms you are having.
Good luck tomorrow, I'll watch for a post
I'll let you know if anything new and exciting happens.
Becky