SS Flare

[Bettyboop71345]

Hi all,

I seem to be experiencing a flare..Not horrible, but the paresthesia is back ! Lots of eye issues. Pain in my rt. hand is spreading to more joints. Right now I'm feeling like my face and arms are covered with hairs that are prickly ! Pretty miserable. Still on 400mg Plaquenil. Guess I just needed to vent‼️

[Tally]

I feel for you Bettyboop take care please xx

[Megansheart]

Sorry ☹️ to hear that you are feeling miserable, Bettyboop. Such diverse symptoms we have, which makes it confusing to us and simply dumbfounds the doctors! 🤓

For me, today is the first day ever that I have not not worn my wedding ring as my joints are swelling so much and my ‘ring finger’ is the last to join the ranks.

On a separate issue to SjS, is my broken/shattered patella. The third week now, with three weeks to go at a minimum for total immobilisation....then there is the rehab. Fortunately I have been spared surgery to date. If healing does not happen then it will be wired together.

The effort of getting about with crutches is putting a strain on all my other joints and muscles, such that I have been feeling pretty miserable at times, along with the parasthæsias. Today I bit the bullet and took some anti inflammatories in addition to my regular meds, so hopefully tomorrow I’ll feel a lot brighter. 🙏🏻😁

So yes Bb, Sjs does present its challenges, aplenty. It’s like an ever moving target!

[SusieW2 in reply to Megansheart]

Ever moving target is right! Best wishes on feeling better.

[25clai]

That is miserable. I’ve experienced the paresthesia fun during a recent hospital stay, when every drug given to me seemed to cause a reaction, admittedly I already nerve problems flare up before I went in, but that feeling is awful. For me too it was on my face, as well as spread all over my body, just a grim sensation.

I’ve been on plaquenil (hydroxychloroquine)400mg per day for 3 yrs. feels like it’s not enough at the moment, with nerve probs etc.

You have my every sympathy. Wish I could recommend something remedial to help, but I haven’t found anything yet...hope it dies down for you soon .!

[SusieW2]

The prickly thing is, I think, related to an allergic reaction. It is with me anyway. Try limiting your diet to foods that don't cause inflammation.

I take fish oil for my eyes and use an eye lid wash (Theratears brand). It helps me.

Good luck!