Hi! I was diagnosed with Sjogrens a few months ago- after 3 years of being sick. I have neurologic involvement (spasticity, ataxia, and peripheral neuropathy). I am really trying to figure out what is what with this illness and am having a hard time. I was hoping someone might be able to help me. I am on plaquenil, baclofen, and salagen.
Last weekend I went to a family reunion held at a park and was in the heat for about 4 hours (I stayed out of the sun for the most part because it made my skin feel like it was burning, but was in the sun about 30 minutes total- after which I had a rash on my face and arms for the rest of the day). My cousin brought her sick son, though I didn't know he was sick until a few days ago. Anyway, last Monday I started feeling pretty bad- I have a rash (petechiea-sp?) on my arms, my spasticity has gotten worse, my balance is bad, my stomach hurts, diarhea, loss of apetite, and a fever every night.
I went to the rheum. on Friday who said she thought I had a stomach bug that wasn't going away because I was on Plaq. so to stop taking it for a few days. Yesterday (still not feeling better) I went to my GP who ran a CDC and started my on antibiotics. The CDC came back normal.
What do I do now? The fever makes me feel awful and I honestly feel like I am going down hill. My joints are killing me (I am guessing from stopping the Plaq?) and just feel awful. Is this a flare? It is a pain to get in touch with my Rheum.- it is much easier to get in with my GP- should I go back to her?
Ugh. Sorry this got so long. Any advice would be appreciated!
Ang
Hi Momofmany,
You sound like me this week, actually for the last few weeks. To me it sounds like a flare, but for sure you should check with your Rheumy. I don't know about your GP - maybe they are more knowledgeable about sjogrens, but I never take possible sjogrens issues to my GP, she just refers me to my rheumy because she really doesn't know what to do with my sjogrens.
I was told that plaquenil will increase my sensitivity to the sun, and I have found that to be very true. Not only do I get that burning feeling and rashes, I think it causes me to flare...though I am just speculating from my own experience.
When I am having really bad sjs symptoms, I also get really bad stomach issues.
I don't know if any of this helps, I just hope you feel better soon!!! Hang in there.
Missy
Missy,
Thank you so much for responding. Can anything be done for a flare or do we just wait it out? How long does a flare usually last? We are supposed to be going on vacation in 10 days, but there is no way I can feeling like this :(
Thank you again!
Ang
Hi Momofmany :)
Welcome to Sjogrensworld.
I'm not medical but it sounds like a flare possibly brought on by being in the sun. The sun is NOT our friend. A lot of sjoggies suffer from photosensitivity and Plaquenil can also cause this so we can beconme doubly sensitive. I can even burn through the windscreen of a car now and yet once upon a time I could sunbathe for hours and go really brown. No more. If I spend long in the sun now even with a big hat, covered up skin, sunglasses and sunblock, I feel ill afterwards. I get a cracking headache, aches and pains and often feel nauseous.
As say - I'm not a doc - so I would see your GP I think, to be on the safe side.
Take care - Scottie :)
Momofmany, flares have kind of a mind of their own, but the best thing is to rest and de-stress. My rheumy always wants me to let him know when I feeling like I am in a flare, so I suggest you do that too. Take care and I hope you feel better soon!!!
Missy
The sun has bothered me for a few years, and I am not yet on Plaquenil. I assume the rheumy will prescribe it, but am not sure. I have my own symptoms, and it seems everyone here has their own variety of flare styles! I get night sweats and burning of th ehands and feet now.
I don't think the lenght of a flare can be determined - it's different for us all. I often have what I call mini-flares. I can FEEL the symptoms come upon me just like that- muschle and joint pain everywhere and faver and brain fog. Sometomes it lasts hours, sometimes days. I can even feel it leave!
Hi momof many :) I was just at the rheumy's office the other day and was telling him about going to Florida and about how i b :)roke out once again after being in the sun. I had a flare that lasted 3 months as a result of being in the sun for 20 minutes. He told me that a lot of us react to the sun and it can bring on a major flare, I also had really bad headache, nausea and fever plus no appetite. In fact i lost 9 lbs this last flare. I too used to love the sun and sand on the beach, no longer can i enjoy those things. I run from the sun and heat now not because it' out there but because i feel as though i've been microwaved ;D. Also i have probs just being in the car and getting rashes on my arm or leg thats close to the window ???. I;m learning that the sun is just not my friend anymore!! Of course alot of things are just not my friend anymore!!
Of course i;m learning to enjoy the good days i have and appreciate the small things that i always overlooked before b/c i was so busy 8).
Welcome to the sight. I found this sight to be helpful and supportive. It has been a lifesaver for me as when i first found this sight i thought i was the only person with this dreadful illness ::) I have learned so much just reading others experiences that i can relate to!
I hope you find this sight helpful too :) Take care