New with a question

[momofmany]

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

[missy1306]

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

[momofmany]

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

[Scottietottie]

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 

[missy1306]

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

[Crabcakes]

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!

[Leisa]

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 . 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 .
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