View Full Version : Slight Update on Me

01-30-2008, 03:14 PM
Just a little update from me.

On Monday of this week I saw my Dermotologist again regarding the horrible bumpy rash that often flares up over my entire face. He decided to do some patch testing to rule out possible allergic reactions to anything so had the patches put on then.

I looked as though someone had attempted to embalm me when I wasnít looking. My entire back covered in the patches and then wads of huge sticking plaster stuff. Same on the top of both arms and then sock bandages put on from my elbows to my shoulders. I could hardly move but at least it let everyone have a good laugh.. Including me ~lol~

While there he told me that he doesnít believe that its Lupus (I assume because my ANA was negative) but he said that I do have anti-bodies which would explain my terrible joint pain, fatigue etc. I told him that the dentist had mentioned that I was showing signs of having a dry mouth so am kinda assuming weíre looking at Sjogrenís Syndrome. Unless thereís another anti-inflammatory disease with dry mouth as a symptom? I didnít tell him about using drops in my eyes as Iím seeing a Rheumatologist for the first time a week on Friday so will go through everything with them.

Had the patches taken off today and am so far only showing an allergy to Nickel which wasnít a surprise, have had trouble with gold jewellery for a while now so tend to stick to silver. I go back for the final results this Friday so will ask him what the antibodies were exactly and what they might point towards.

I donít only get pain in my joints though. Sometimes I might have pain in my hip and knee and at the same time its as though thereís someone tightly holding my thigh and every so often they squeeze tighter and let go. Will make a list to take with me and see what they say. Will assume lots more tests are in my near future.

Will update in a few weeks when I know more! Thanks for all the support I find here and hope you are all in good spirits and good health.


01-30-2008, 05:26 PM
Claire, I have Sjogren's myself, as well as SLE. Yeah, dry eyes, dry mouth, dry...well...other things. :oops: Sjogren's can have lots of the same symptoms as lupus, you know. Check out the Sjogren's Foundation website - they have a lot of good info. http://www.sjogrens.org/

Keep us posted on your test results, Claire.


02-01-2008, 05:27 AM
Saw the dermotologist again today and he said that he thought the rash on my face was probably Cutaneous Lupus. Does anyone have any information on this? :shock:

He wants to do a biopsy on my face but as the rash is only on my cheeks just now, he wants to wait until its more on the outskirts to do this (am assuming that's because it will scar) :(

He said that I did have antibodies though (which I think were RFA but I was reading upside down and that could be wrong) and the level was about 37.5. No idea what that means. But because of my other symptoms he said I probably had another mixed connective tissue disease and would probably need a Schrimers test (sp?) for tear production.

So that's me until next Friday when I see my Rheumotologist.

02-01-2008, 07:51 PM

I have the same pain in my hips and knees. My knees don't hurt as often as my back does. It often feels like someone is just cracking my hips like a nut or something...and my back like someone is just twisting and wringing it out like a rag. I'm taking ambien, and a diaulaud (pain med) every night when I go to bed. I often worry about getting addicted to this and the sleeping pills, but I guess on the other hand since this stuff is incurable, I'll always be taking it.

I've stopped seeing my rhymatologist. I hated him. He was awful, never did anything and always just looked at me like I was nuts and wrote more scripts. I only see my oncologist now. I actually found one that specializes in lupus and hematology. He's great. He listens, and is great. I wished you lived in Oklahoma, I'd suggest you see go see him.

I did read an article written on behalf of a doctor here in Oklahoma City, doing his research at the Oklahoma Medical Research Foundation, that he thinks / believes that he's found the 13 chromosones that is causing lupus, and is beginning more extensive research on different races to test this "hypothesis" and find out what gentic mutation is causing this horrid dieses.

Anyway, just wanted you to know that your not alone with the hip pain. I love dilauded and demeroyl. Try those sweetie.

Keep me posted on your self.