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Update At The Hospital

6 posts in this topic

Hi Everyone,

 

It has been nearly 5 months since I was diagnosed with Limited Scleroderma, I have a positive ANA and also positive anti-centromere antibodies. I have just had a 3 monthly visit with my rheumatologist and he said that although I have basically no skin involvement as yet the Scleroderma seems to be rapidly going internally!

 

My baseline tests were a bit confusing 5 months ago, my first echo showed P/H, my second showed probably normal. My rheumatologist seems in a bit of a panic now and now says that although my second echo report says probably normal, he now thinks that the numbers on the report are now not all that good. He has referred me to see a Cardiologist at the hospital and is going to personally speak to the consultant about things. He has also referred me to a Urologist as I have been on a short course of Prednisolone for about 12 days and have since developed kidney pain. Can anyone tell me whether my limited Scleroderma can turn into Diffuse or Sine Scleroderma?
I always thought that Limited Scleroderma was much slower at progressing.

 

I have had many more symptoms over the last few months but all is internal.

 

Anyway thanks for listening.

 

Best wishes,

 

Celia dry.gif

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Hello Celia,

 

I was reading today that "Anticentromere antibodies ( ACA ) are characteristic of localized cutaneous systemic sclerosis or CREST syndrome but can be detected in other Systemic connective inflamatory disease." If this is true than there is a possiblity that there could be some overlap of the subset of scleroderma, however, I am sure that your dr would tell you his ideas on what exactly is going on and why it is progressing. It sounds as if he is trying to get your illness under controle.

Please take extra good care of yourself right now and please let us know what happens with your Urology appointment. Did your labs indicate any problems with your kidneys or was it the pain alone that is sending you to the Urologist?


*WestCoast*

 

********

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Celia,

 

I am so sorry so many things are going on with you. I was diagnosed with CREST/Limited in Dec. 2006. I asked my rheumatologist at that time if it could evolve into diffuse or sine and she said each person is different and that we have no way of knowing what course it will take. She said that we just had to be vigilant. I do know that she told me that prednisone can cause kidney problems in scleroderma patients. It sounds like your doctor is very concerned and on top of things. I send good vibes your way.

 

Nan

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Hey Celia

 

Sorry you are not going so well. Hugs from a fellow aussie sufferer.

 

Like you I have rapidly onsetting internal symtoms and it can be a little scary, but it sounds like you Dr is taking care of you and will help sort things out.


Kindest Regards

 

Sharon

 

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

 

a little bent and broken and almost beyond repair!

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Hi Celia,

 

I'm really sorry you are dealing with so much right now. My rheumatologist told me that YES limited sclero can turn into diffuse. Sounds like you are in good hands though girl. Just take one day at a time my friend.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, Celia. I can understand your frustration - you are 'diagnosed' with something, read up on it and expect things to progress in a certain way. Erin is right about the ACA. Here is the link to that information on the site:

Anticentromere Antibodies in Systemic Connective Inflammatory Disease. ACA are very specific of scleroderma, in particular localized cutaneous systemic sclerosis, but the positive predictive value is low. ACA are detected only in 23 % of the patients with localized cutaneous systemic sclerosis and can appear in other systemic connective inflammatory disease.

As she said, the important thing is that your doctors are working with you to control it. I am glad to see that your rheumatologist is one who tends to err on the side of caution - he obviously has your best interests at heart. Keep us posted, please.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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