I am a very healthy 25-year-old female. When I was 15, my Raynaud's and fatigue prompted my family to take me to a physician. I have had Raynaud's since about the age of 10, but only considered it a nuisance until the fatigue was also present. Lots of tests were run at the time and I was given the diagnosis of Undifferentiated Mixed Connective Tissue Disease based on a positive ANA and the Raynaud's (no other symptoms except I was also EXTREMELY anemic, but that was solved with iron supplements). I was put on Plaquenil (400 mg a day) and have continued this treatment with yearly check-ups ever since (now a decade). My condition has never changed and the Plaquenil must be keeping the ANA in a more normal range as my treatment has never changed and my doctor has never raised any other concerns.
My question is two-fold:
1) I have been denied both life and disability insurance based on my diagnosis and prescription. But I'm so healthy! Is it possible that after 10 years treatment is no longer necessary? Is it possible to be UNdiagnosed? I've read before that if UMCTD does not progress within 2 years of diagnosis the chances that it WILL decrease exponentially. If I tried stopping my medication (with doctor's knowledge), would I be putting myself at risk for letting the disease progress to lupus, etc.? Will I face the problem of uninsurability for the rest of my life when I have no symptoms to speak of (except purple hands)?
2) My husband and I are getting to the point where children are a distinct possibility. My doctor has said that I'll need to discontinue the prescription before and during pregnancy. Are there risks associated with this? Again, do I run the risk of the disease progressing? Does my condition pose any potential complications with pregnancy?
I would really appreciate a doctor's opinion, but would also love to hear of anyone who has experienced a similar situation. Thanks!
To get a doctor opinion, you would need to post in the Expert Forum. The link in near bottom right.
I can't give you much in the way of answers, but I would suggest getting a second opinion. Do you see a rhematologist? If not, you should.
Autoimmune disorders can wax and wane. And ANA levels are not a good indicator of weather it's progressing or receeding.
Since it has been 10 years since the dx, have they run a repeat of the different tests other than ANA? There are others used to help point them in the direction of which AI, such as lupus, scelroderma, etc.
As to preganency with AI... I have a positive ANA, undiagnosed AI. My "baby" is now 16. I have had 4 pregnancies, three live births. My first was normal pregnancy, lost the second (may have been helped by my very physical job), 3rd born 8th month and on apnea monitors for 4 months, 4th, almost lost 4th month but bedrest kept him "viable" and he was induced in 8th month. I'm also ashamed to admit, I smoked during my pregnancies which most likely helped the problems.
Today they are 22, 18 and 16 and healthy. One even gave me a grand-daughter.
prolonged medication may or may not be necessary.you must undergo fresh range of tests by a specialist .autoimmune diseases may sound incurable but at your young age as you grow some genetical memory mutations occur over a period of time when right body environment for last 10 years of treatment may have initiated a 'new type of body response" you never know ,so there may be lot many chances that you may not require further medications, if not , then dosing may be tapered and you shall not progress to any further diseases you fear. See a rheumatologist and vascular specialist in a good hospital.transmission of autoimmune disorders is difficult to predict kindly consult a genetic expert and a gynecologist
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