hi my sister has diffuse systemic sclerodrema feeling ill february 2010 june mild positive ana antibody,by september 2010 ANA antibody 1-1000 with RNA antibodyalso. can some one tell me how bad is this. her lastest crp levels are 19 and esr 22. i know these antibodies are bad but dont understand can the level of ana /rna antibodies decrease or dissapear. she is currently taking the controversial AP Minocin if this works and makes her better will these antibodies go away? This is such a comlicated disease it is so hard to understand what is going on in her body. aswer are not doctors please some one help rhumatoligists just do not knw enough about this rare and nasty disease. caroline united kingdom. ps has been taking prednisalone since sept2010 to current.
Hi I was recently Diagnosed with Scleroderma as well. I'm sorry your sister is going through all of this.
Do not worry about the antibody numbers. There is no correlation between the numbers and how badly she has the disease. Also the antibodies sometimes might not even show up in blood work as it depends on if the disease is active at the time. Because it is an autoimmune response it can go randomly into remission and then comeback with no known reason as to why.
To Answer your question, the antibodies will probably not go away, but that does not mean she might not go into remission. The important thing to know is how her other baseline tests are... such as lung and heart tests which will determine how progressive if at all the disease really is.
Thank you her lungs and heart tests have just come back fine ,however she does have an RNA antibody which seems really serious, can i ask is yours diffuse like claire (my sis) you are so young also claire is 33 .she is currently not taking the immunosuppresants prescribed she is going down the antibiotic protocol route. are you taking Minocin antibiotic or have you gone down the conventional meds road. its such a big decision to make as alot of the drugs prescribed are quite severe and can cause so many ather probs . i would be interested to know what you take if anything and how that has affected you .its lovely to speak to someone in the same situation allthough i wish you were not. how are you and how long have you had this, i saw the pics of your spinal op my goodness that looked nasty u are very brave whatever yu had done. thanx for your reply that makes sence.hope you dont mind and dont think i have been too nosey its just their is so little medical information in the uk about this disease,were on our own really. xxxx caroline
not a problem. It took years for Dr's to figure out what what going on with me because I don't have any skin symptoms that would point them towards scleroderma. I have positive SCL-70 antibodies which typically indicates the diffuse type. I do not take any immunosuppresants at this time because my lung and heart involvement is not severe enough to justify taking it.
I do not know much about RNA antibodies but I get a lot of help and support from the scleroderma site which you might be able to post questions about it that only people with scleroderma will answer and there are a lot of people with knowledge on there including people from the UK!!!!!!!
this is the site: h ttp://w ww.inspire. com/groups/scleroderma-foundation/
i added some spaces in there just incase they get pissy about posting links....
But anyways that site will be an awesome resource for you and your sis and you can lear a lot and hear from people who have tried the anti-biotic protocol as well as what kind of drugs that others are taking etc. Good luck and i hope this helps!
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