Another Newbie!

[beckysmom]

Hello Everyone!   Just diagnosed ,negative blood test but positive results from Plaquenil(immediate). Symptoms are dry nose-eyes, eye pressure-pain,weakness and fatigue. I have been on temporary disability for 1 year now searching for a diagnosis. So far I have Latent Celiac Disease-Sjogrens-and possibly Myasthenia Gravis(awaiting blood test results).My diet is pretty riduculous- no gluten,no casein,(dairy)molld -free. It appears my Immune system is thorougly WACKO! I had Cervical Cancer 2003- chemo and radiation left me with a fragile digestive system-in turn autoimmune disease(s). My concern this week is my swollen parotid glands-after a facial sunburn. Each morning I wake up jaws ache, swollen parotid-swelling goes down throughout day-next day same thing. Today I swept the deck and spent some time outside and my jaw aches parotid swollen-Can allergies(tree-pollen-mold) cause this? Also my fatigue is so intense--both muscular and whole body. I can't believe how severe it can be some days-Is muscle fatigue usual? Does heat or hot water make your symptoms worse? My Rhuemy knows of my swollen parotids-does'nt want to go steroid yet- Is there another choice(medical-natural) for this inflammation? Thank You all for help!

[Linda196]

Hello and welcome, Beckysmom.

Sounds like your doc is on the ball, getting you on Plaquenil without waiting for positive blood result, I'm glad you're having good results. Often the antiinflammatory action of the Plaquenil can help control the parotid swelling, but, since you can trace your's almost directly to sun exposure and probably exertion, it sounds like a flare of sorts, and without steroids, may have to run it's course. There are other DMARDS/immunosuppressants like methotrexate and Imuran, but they all have their list of side effects and potential problems. Would he consider a very short treatment with steroids to bring down the immediate problem, and then you could stop taking them?

You may find that hot packs (especially the rice or grain filled ones that you put in the microwave) can help because you can mold them around the cheek and jaw for the most effect. I find that hot weather aggravates my fatigue, while cold triggers the pain in my hands and feet...not very helpful I know, but SjS is a highly individual disease, and we all seem to have different reactions and symptoms,

[beverley]

Hi and welcome Beckysmom,

Sorry you are flaring right now.  The fatigue really gets you down, but it will pass.  The Plaq will take up to six months to really kick in, but when it does you'll really notice the difference.  Short term steroids work well if you are stuck in a bad one that won't shift.  My rheumy put me on six weeks treatment last Autumn, decreasing the level of Prednisone each week.

Hope you feel better soon.

Beverley

[wednesday mc haggis]

welcome to the forum.

I agreee sounds like a good doc, whose being proactive.

since your diet is strict, you may find the benefit of candida diet recipie books, all the recipies are dairy and mould/yeast free, most are gluten free, ive been trying this diet myself, and have seen an improvment in some symptoms, though i know  its not easy and pretty restrictive .

  Thoughts with you, take a look round the forum, you ll find lots of great advice, planequil   though working straight of the bat for you wont hit its full effect for up to 6 months, so hopefully you ll get even more benefit from it soon .

T x

[Scottietottie]

Hi beckysmom 

Welcome to Sjogren's world. Glad the Plaquenil's helpful. Hope you get the answers you need sooner rather than later!

Take care - Scottie 

[lynnmarie219]

Hi Beckysmom!

Just adding my welcome to you as well....I hope you continue to find this site useful.

Please keep us posted on how the plaquenil works for you...it sounds like you are off to a good start with it! That's great! 

[jonnell]

Hi Beckysmom welcome to the forum.  My 4 year old has sjs and the heat does make it worse.  In the summer she cant even walk around the block her legs hurt so bad.  She also has the paratoid swelling she looks like a little chipmunk.  And the sun bothers her a lot.  Our thoughts and prayers are with you.

[Patze]

Hi Beckysmom,

Let me also welcome you to the SJS World!  Please peruse the board as there a lot of topics that you might be interested in.

I'm also glad to see that you have a proactive doctor, how lucky you are!  A lot of doctors won't prescribe Plaquenil without positive blood work; I'm also lucky that the rheumy I see does prescribe for me being sero negative and all .

I do know the warmer I get, the worse I feel, and I get so darn weak - it's a weird feeling!

Again, welcome!

Take care -

Patze