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Saw The Dr. To Review My Results.


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#1 Jessica

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Posted 19 April 2007 - 04:54 AM

So, I went to see my Rheumatologists this past Monday to go over my results. Which my results are as follows...Scl-70 1.62H, ANA positive, ANA Pattern Homogeneous, Antinuclear Antibodies 1:80H, and my only symptom is random joint pain. My doctor said she has no reason to believe I have Scleroderma. She told me I have palindromic rheumatism. Which PR is a rare type of inflammatory arthritis. It's characterized by recurrent attacks of painful swelling of the joints and surrounding tissues. She said 1/3 of the people who have PR is goes away, the 1/3 the symptoms stay the same, and the other 1/3 it develops into Rheumatoid Arthritis. She also said I have a connective tissue disorder which I'm confused about. She prescribed me hydroxychloroquine which I think is the generic drug for Plaquenil. I am going to get a second opinion just to have peace of mind at the end of May. Even if my doctor is wrong or if my symptoms change it is a good thing that I'm on Plaquenil, right? Also, she said my blood levels weren't high enough to concern her. Does anyone know what my blood levels mean?

#2 Shelley Ensz

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Posted 19 April 2007 - 05:08 AM

Hi Jessica,

I'm sorry to hear what you are going through. Sometimes joint pain is the first sign of scleroderma, but the kicker is that scleroderma cannot be diagnosed based only on joint pain and positive bloodwork. It requires a certain constellation of symptoms, at which point they then seem to take the bloodwork more seriously. See What is Scleroderma?

Apparently, a fair number of people develop just one or two symptoms of connective tissue disease, and even with positive antibodies, the illness stabilizes or goes away without developing into full-blown disease.

A second opinion sounds like a good idea, though, since it doesn't sound like you were thoroughly screened for other symptoms of scleroderma which can develop silently (like lung involvement.)

I'm not a doctor (I have no medical training at all) but to me, plaquenil sounds like a good step in the right direction, and it is often quite helpful with joint pain. It is considered to be a DMARD (disease modifying anti-rheumatic drug).
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Sweet

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Posted 19 April 2007 - 06:00 AM

Hi Jessica!

At this stage in the game, being on plaquenil is good! Sometimes it take years for the true identity of an autoimmune disease diagnosis to become clear. I basically started out with the same results you did and my rheumatologist put me on plaquenil and told me it has a great reputation of stalling the progression of the disease if not halting it completely.

You could have any number of connective tissue diseases but over time hopefully due to symptoms and more lab results you will get a definitive answer. It took about 5 years for everything to become clear for me and my rheumatologist. Even though I have the Lupus/Sclero diag. My rheumatologist still refers to it most of the time as "Connective Tissue Disease".

Take one day at a time and keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 shari42

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Posted 19 April 2007 - 07:38 AM

Hi Jessica,

I also think the Plaquenil is a good idea. I've been on it for about 2 years. I'm dxed with UCTD, with symptoms of lupus and sclero. My ANA is positive too, they haven't run it in awhile, though, so I don't know the number. I know it was the nucleolar pattern, which is specific for sclero. My rheumatologist told me the Plaquenil helps keep the inflammation down, which I think slows the progression. A second opinion is always good, so I agree with Sweet and Shelley. When I first when to the rheumatologist, my only symptom was raynaud's related.
Hope this helps,

Hugs,

Shari

#5 Heidi

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Posted 19 April 2007 - 10:03 AM

HI Jessica,

I too am one of those people with "Connective Tissue Disease". I have a positive ANA and my rheumatologist said my symptoms have been all over the place, but never enough to confirm a single diagnosis (so he refers to it as Undifferentiated Connective Tissue Disease). He started me on Plaquenil about 4 years ago and it helped me tremendously with my general muscle fatigue and overall pain.

Please keep us posted on what you decide.

Warm wishes,
Heidi

#6 ErinF

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Posted 19 April 2007 - 10:14 AM

I think Jessica's case shows how different rheumatologists can be. My ANA is 1:320 homogeneous and my Scl 70 is 2.18; both much higher than Jessica's but the rheumatologist I saw said no meds...Jessica is put on plaquenil. My primary care physician says it's all about whether or not the doctor practices "evidence based medicine" (in terms of using meds) and to what extent he/she trusts and uses antibodies. You wind up wondering which doctor is right, and maybe sometimes you just never know and have to take a chance. I sure wish, though, there was some sense of uniformity. It's not like you want to chase doctors until one agrees with you (like you actually WANT a diagnosis), but you can't help but feel that either they think that or that maybe you really are suffering from a somatic illness.

I'm glad, Jessica, that you getting some meds to slow down whatever is going on inside your body!

Take care!
ErinF