I was wondering two things if someone has this syndrome, how long will a flareup last, ever since I have had a paritod infection in my gland ear, no more pain just cannot hear completely from my ear, has anyone had this. also was wondering on the same side of the pariitod infection that has now gone down with antibiotics, my body feels very weak, both sides under my ears feel down my neck is sore does anyone have that. I feel so tired too like I just want to sit in a chair and not do a thing, my mind feels very confused is this part of this syndrome. I feel so strange like I cannot even think. If this is a flare up how long will my body feel this way. Going back to the ent on monday, On cirproflexin and wondering is it the medicine. sorry for all the questions, wondering why I cannot hear very well is it maybe the gland below my ear, it has gone down alot. If anyone has experience with this I would be so grateful to any input.
thankyou all for listening
Laurie
Hi Laurie :)
SjS is such an individual disease there is no set answer to your question. I wish there was. Some people flare for days, some for weeks and some for months and there's no rhyme nor reason to it. There is no predicting who will do what. There's no set course for progression and some people don't have any progression. It all a big unknown.
Most people feel pretty tired after an infection of any kind. Put that on top of Sjogren's fatigue - and feeling that tired is not unusual. The not being able to think is the 'brain-fog' people refer to. I found Plaquenil helped with this and also thyroid medication as that was affecting me too.
Have you been put on Plaquenil or Prednisone? (I can't remember)
Take care - Scottie :)
Thank you for responding, I was on predesone, 20 mg 2x day, could not stand it was only on it to bring all the inflamation down felt so horrible edgy racy it was so horrible, what does the other drug do.
thanks
Hi Laurie, I constantly have the parotid glands swollen. As mentioned above the flares are different for everyone and are set off my different things. For me, the heat or exertion sets me off. Hang in there. You are not alone.
Steve
Hi Laurie :)
Plaquenil is acually an anti malarial but seems to slow the progression of AI diseases like SjS and lupus. I'm not sure if anybody knows quite how it works - only that it does. It's no quick fix though as it can take up to 6 months to be effective. It helped me with energy levels and brain fog though. Some people find it helps the aches and pains but I didn't find that.
Take care - Scottie :)