AsI have posted many times sorry - there is no 100% blood test or even lip biopsy to prove SS or disprove SS.
The Sjo IMMCO test is actually ANA anto ro/la plus 3 other test BUT it is only 85% accurate and 90% specific to SS.
In those of us who are sero negative the only way to diagnose is symptomatic by a good clinician backed by Schirmers test and salivary flow test.
You should sue your 1st rheumatologist for professional misconduct and negligence find a good no win no fee attorney.
Confused: I do understand about feeling sicker after u leave the dr. Office be encouraged !!!
Thanks Wendy
I'm not the one with the medical education here, but assybish, joshed, and Ovisaries are.
I know that we are tested for Sjogren's by various means, we constantly find info on the net telling us about new tests, but if you just read the beginnings of this paper from the American Board of Rheumatology, it will confirm what the above members are trying to get across to us as a means of informing us that the tests being given us are not 100% dedicated to a specific disease or 100% accurate, that intrepretation and final diagnosis from a Physician is necessary.
http://www.cap.org/apps/docs/committees/immunology/arpa_124_10_71.p...
If I am incorrect, I would like to hear from those WITH a medical education, please. :)
I also have the itching that when scratched causes a rash to appear. Never knew anyone else with this problem.
Confused, there seems to be a variety of rashes that are connected to so very many autoimmune diseases, that I'm not sure that the rash alone can point to one specific one. I was amazed to learn from my allergist of all the different kinds of hives alone.
I suppose I need to specify that psoriasis can be easily seperated from other rashes, as can the butterfly facial rash of Lupus.
My husband has been Doctoring for a 'undiagnosed rash' for over 2 years now. He has tried at least 25 prescription creams and lotions.
Again, I can be corrected, I'm not a medical professional.
What you are going through must be maddening Has anyone sent you to a dermatologist yet?
Thank you so much SK
I know what I go through with my husband, and I feel for you sister!
I do see a derm. I actually have an appointment tomorrow with him. When he found out about the possible SS diagnoses, he said he was so sorry. He also stated that now everything made sense. I've known this derm. for almost 2 decades. We couldn't figure out why my Lichen Planus was not going away with treatment like it had done throughout the years. When I mentioned the SS....without even taking a second, he had an "Aha" look on his face. He stated that now everything makes sense. He then gave me a hug. I've been seeing him for sooo long. He has NEVER spontaneously given me a hug throughout all the years. It made me feel like we finally had the answer to my skin issues. At the same time, it scared me so much b/c he never had that type of reaction throughout our years of contact. I think I 1st started seeing him in the late 1990's. I've been fighting this under the name "Fibromyalgia" for years. The illness took away a thriving career in return with being on SS Disability.
That all sounds good, but was he able to prescribe a med to help with this itching, or an oral med for systemic treatment?
Does benadryl or Pred help at all?
My husband takes the Prednisone, and he clears up, the moment the course is complete, back it comes!
Shirwing I have that problem
Wendy and Shirwing,
Read the very last entry on this page 'Dermatographism'. Does this explain it?
http://www.webmd.com/skin-problems-and-treatments/guide/hives-urticaria-angioedema
Yes!
A rash is a common SjS symptom. Mine doesn’t really look like a normal rash, but it sure itches. If it only itches after a hot shower etc, that’s likely something else your doctor should know about. Itching is common though. The sun is a big no-no for us and often is the culprit.
Sigh
Ellen Schnakenberg
Confused....I got the same reaction from my allergy and asthma guy. I go to him for anything at all that's respiratory (after a PA missed a bad infection that caused me considerable issues due to the delay in diagnosis). He noticed the Plaquenil on my new meds list and asked if I had lupus. When I said it was Sjogren's he got the same Ah ha look. He said that explains an awful lot about what's been going on with me and went on to tell me how the systems work and interact. Especially with allergies and the inflammation. It actually feels good to understand it, much as it stinks going through it.
I definitely have taken Prednisone more than once. Unfortunately, the rash comes right back after I get off of the prednisone. I've had Lichen Planus and excema for many years now. At this time I am fighting the LP and the excema. My nails have been impacted too. I had hives when I was young. As a child, I used to sit down and write on my skin to watch it swell. I thought it was cool. I grew out of that type of hives....I hope. My Derm. stated that my issues not responding to anything anymore is just one part of why he thinks it's SS. He did state that I may want to get a different Rheumy. The doctor that my Derm. worked under when he was getting his MD is a Rheumy. He gave me his name. I'm probably going to have to get an attorney b/c the original Rheumy has never returned any of my calls...talk about frustrating. He's allowed 30 days in reference to giving me all of my medical records. Thirty days of limbo......GRRRRR!!
SK sorry for such a late response.
The article you out up from rheumatology is a bit out of date(1999 or so) so some may say that the "newer" tests contradict this article however you are correct to maintain that there is still no 100% accurate test or even set of tests for SS whether blood anti body or physical. Thanks for your as ever measured adn informative contribution.
I don't know why there is no test other than lack of research and effort as I believe that an anti body test for M3 all subgroups auto anti bodies would be positive in ALL SS/sicca sufferers. I am trying to get an appointment with an immunologist just to ask this question but it's like pulling hen's teeth!
I sincerely hope you have found some improvement in your back issues and send you my best wishes xxx
Is there something particular about only getting it after hot showers? I don't get an itch so much as very painful prickles. I was assuming it was related to the neuro-type symptoms. Funny how that happens...I was wondering why?
Eschnak said:
Yes!
A rash is a common SjS symptom. Mine doesn't really look like a normal rash, but it sure itches. If it only itches after a hot shower etc, that's likely something else your doctor should know about. Itching is common though. The sun is a big no-no for us and often is the culprit.
*Sigh*
Ellen Schnakenberg
Itching can often be from moncyte infiltration of the skin which results in VERY itchy lumps/spots which when scratched bleed and then scar.
Is called urticaria or "hives"
I get it all the time especially severe at night.
No effective treatment but old fashioned anti histamines can reduce the symptoms but can make you drowsy so I take one when it is too bad at night - it helps me sleep too :)