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#1 lotokids9

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Posted 11 August 2008 - 10:34 AM

Hey everyone.

I am a 34 year old woman, wife and mother to 9 children. In February I started having popping in my joints that then went to pain in my elbows and every other joint in my body. I got so bad that I was bed ridden. They put me on 200mg Celebrex one time a day and that did nothing. They then put me on a two week prednisone tapper and that helped a lot. After that I was not a 100% again but I could function decently. They put me on 200mg Celebrex 2x's a day and we waited for the blood work.

These were my results...
My sed rate was 25 HIGH
Rheumatoid Factor 19.1 HIGH
antistreptolysin o Ab 349.36 HIGH
Parvovirus B19, IgG 4.8 HIGH

He ran an ANA+ENA+DNA/DS+Anti-H+Centr... that was negative this time 35 where last time I had blood work done I had an ANA Choice that came back positive, however ANA by IFA reflex was negative.

So the Rhuematolgoist decided it was a strep infection and sent me on my way. I really felt it was Rheumatoid Arthritis. The doctor seemed to feel if it didn't have softball swelling with red and hot then it was not that. So I continued on my Celebrex 2x's a day and got feeling about 85% better. Still couldn't exercise because that would start me hurting even low level walking.

I decided if this is RA I need to be on some stronger meds to stop the progression, if it is just a virus it should be gone by now. (July) So I stopped taking the second celebrex and after four days I was in a ton of pain. My husband said get back on the med. you don't want to be bed ridden again. No I did not so back to two times a day Celebrex I went and after a week and a half I was still feeling lousy so I made an appointment with my family doctor. Told him ok, what is up I do not buy that this is an infection. He said, no I don't either and he did more labs and put me on another pred. tapper. Blood work came back this time saying...

ESR 32 high
Rheumatoid Factor 20 high
BUN/CREATNINE RATIO 34.4 high
ANA CHOICE positive
ANA CHOICE CASCADE
SCL-70 AB 3.3 high

Cascade interpretive comment
SCL-70 antibody is strongly associated with scleroderma. Very rarely, it may be seen in other connective tissue disease. A positive result at this stage of testing stops further testing, ad does not prelude additional positive antibodies. Clinical correlation is required to assess the need for testing additional analytes.


Ok, why not just do the whole cascade vrs. stopping just because of a high marker. Wouldn't it be good to know if other things are high?

So I am currently waiting to get in to another Rheumatologist. Not going back to that other one but the doctor's are playing phone tag.

I am on the second half of my pred. tapper and finally feeling pretty decent.

My main complaint is joint pain however the last two weeks I have had tightness in my chest especially when laying down. Feels like I can't breath but I am not turning blue or anything. I feel horrible, just like I am starting to get the flu. Low grade fever.

Any advise, comments or suggestions would be greatly appreciated.

FYI: Also on Cytomel and levothyroxine for my Hashimoto's Thyroiditis.

Thanks,
lotokids

#2 tintin

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Posted 11 August 2008 - 12:12 PM

Sounds like your rheumatologist thinks you have Poststreptococcal Reactive Arthritis. The fact that your second set of labs showed no improvement in your RF and some new antibodies as well would make me nervous. I think it is quite common to have an autoimmune disease triggered by a virus. My SSc started after a bout of the flu. You might want to get a second opinion on your labs.
keep on smiling

crawler

#3 janey

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Posted 11 August 2008 - 12:47 PM

Dear Lotokids,
Welcome to the ISN forums! Sounds like you have a lot of questions for your doctors - the most important one being "What's going ON?!?!?!?" At least the rheumatologist you have now is taking some bloodwork, but I think you are smart in trying another rheumatologist.

We do have a great page on antibodies with lots of informative links. It might help you determine what other antibody testing you need, if any. I know when I was diagnosed the only anitbody I had tested was the ANA. My rheumatologist used my 3 page list of symptoms to make a diagnosis. Once diagnosed, then he had lots of other tests ran to establish baseline for various organs. So be sure to write down ALL of your symptoms whether or not you think they are related. The tightness in the chest is an important. I had the same laying down. Fatigue, tingling feeling, muscle weakness, lack of stamina, loss of appetite - anything - write it down and take it to your next appointment. There are so many symptoms related to connective tissue tissues that the more information you can provide, the easier and quicker the diagnosis. Of course with 9 children, fatigue can easily be explained. smile.gif

Please let us know how your next appointment goes and the results of any tests.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)