Hello everyone!

[Harrell0323]

I am so glad to be here. I have an antibody marker for scleroderma but have only been diagnosed with undifferentiated connective tissue disease and like connecting with others that have scleroderma to learn more about it.

[agnbg0826]

Hello, my I ask what marker you have. How was your c reactive protein

[Harrell0323 in reply to agnbg0826]

I was low positive 30 for anti rna polymerase iii and my crp was high - around 16. I have arthritis type pain all over, I also have gastritis, gerd, hiatus hernia, and had my esophagus stretched. My fingers have been puffy in the mornings with inhibited movement until I warm them up.

Do you have scleroderma? And if so, are you coping ok with it?

[agnbg0826 in reply to Harrell0323]

I haven't been formally diagnosed. My c reactive protein was 25. I had a sonogram and they said they see some thickening in my kidneys. I see a specialist on the 28th. I have a constant pink face hands and arms. I don't think I was ever tested for that marker you have. I was speckled homogenous pattern. My mom had the disease. How long have you had the first onset of symptoms.

[Harrell0323 in reply to agnbg0826]

I’ve first noticed the hand swelling last summer. I was also having a lot of arthritis pain. My regular nurse practitioner ran the autoimmune tests. I was positive Ana homogeneous pattern. My score was only 1:40 though. So barely positive. My crp was high also. Then she referred me to a rheumatologist who ran further tests. The anti rna polymerase iii came back positive and my crp was still running high. I was diagnosed with uctd. She started me on plaquenil which I hated. So now she wants me to start methotrexate and I haven’t started taking like I should yet. Im scared. I have non alcoholic fatty liver and I’m afraid it will worsen it. But the dr insists on me taking and said she will keep an eye on my liver. Anyhow that’s most of my story. I hope you find out more on the 28th. Where is your specialists? I had thought about going to a scleroderma specialist. How long have you had your symptoms?

[agnbg0826 in reply to Harrell0323]

It all started 2 years ago. I was also 1:40. I am going to upmc in Pittsburgh. Where are you located?

[Harrell0323 in reply to agnbg0826]

I’m in east TN. I had thought about going to John Hopkins center or Duke. I’m just not sure what to do. I wonder about my NP rheumatologist and if she really is making the right decision for me.

You should ask them to test you for all the antibodies involved in scleroderma. It can certainly tell you which direction the disease might go if you are diagnosed with it.

How did your mom do with scleroderma? Did her drs know a lot about it? I have heard it is so rare a lot of drs didn’t know much about it years ago and even today unfortunately.

[agnbg0826 in reply to Harrell0323]

She only had hardening in her hands. She was a heavy smoker and ended up passing away from emphaseyma. I don't believe the schleroderma killed her. She has raynauds which I have do not have. Do you? I think you should defenitly go to a specialist. They are more knowledgeable and are willing to look outside the box

[Harrell0323 in reply to agnbg0826]

I’m sorry you lost your mother. I have at times see some discoloration in my fingertips and they definitely peel and crack but I haven’t been diagnosed with raynaud’s. I will probably save my income tax return just in case I decide to go to a specialist. I have good insurance but just hate to have so many expenses. I had my gallbladder out in November and am still paying for that.

[agnbg0826 in reply to Harrell0323]

Thank you. Yes, I would definitely ask how many patients your doctor has treated with it. I will keep you in prayer

[Harrell0323 in reply to agnbg0826]

Thank you! I will keep you in prayers too!

[Mecca4lif in reply to Harrell0323]

Hi. I am recently diagnosed with limited scleroderma and I have about 8 specialist and only my rheumatologist and pain doctor are familiar with sceleraderma. It's so sad. They are learning with each case.

[Harrell0323 in reply to Mecca4lif]

I know! It’s rare to find someone who’s even heard of it. I’m going to ask my rheumatologist how many scleroderma patients they have. I bet I won’t be surprised that they don’t have many.

[agnbg0826 in reply to Mecca4lif]

Yes it is sad and scary. I feel no one truly understands the fear I have. I have 4 teenagers