How was your Scleroderma diagnosed?

[dacharya]

If you have Scleroderma then I would like to know how your Scleroderma is diagnosed? Was it confirmed from the blood test?

[MissusTee]

from a mixture of symptoms and blood tests. Took 10 years for me in the 90’s despite a gangrenous finger ulcer!

[dacharya in reply to MissusTee]

Which blood test confirmed that you have Scleroderma?

[MissusTee in reply to dacharya]

ANA anti centromere.

[dacharya in reply to MissusTee]

In your blood report how much was you ANA and centromere levels and did it cross the limit?

[MissusTee in reply to dacharya]

It was at the highest titre measurable which is 1:2560

[dacharya in reply to MissusTee]

I don't get it. What is the maximum limit on your report and why is it showing as a ratio of 1:2560? What does it mean?

[MissusTee in reply to dacharya]

It demonstrates the antibody levels so I have very high anti centromere antibody levels in my blood tests.

[dacharya in reply to MissusTee]

So, what should be the normal range according to the report and how much high was yours?

[MissusTee in reply to dacharya]

Normal is 1:40 and under. So mine is very much higher.

[dacharya in reply to MissusTee]

Could you ask your doctor whether one can still have Scleroderma if the levels are within the limit?

[MissusTee in reply to dacharya]

You can but it’s rare.

[Kefaloniadreams]

Hi. I was diagnosed by deep biopsies into my arm and leg.

[dacharya in reply to Kefaloniadreams]

In which hospital it was done and was it painful?

[Kefaloniadreams in reply to dacharya]

At the BGH in the Scottish Borders. It wasn't terribly painful but they did have trouble stitching them up neatly due to the lack of any loose skin in the area.

[StormySky]

Mine was diagnosed really quickly, within 2-3 months of onset of symptoms. Symptoms at presentation: rash up legs, peeling skin around eyes and mouth, swollen, black hands (sufficiently swollen there was little movement in them, even when I concentrated really hard on trying to get them to move), deep lesions to skin on palms, fingers and heels with like a crust of thickened skin in those areas, weak muscles in forearms and hands. It was a very experienced dermatologist who suspected it and ordered a blood test which found positive ANA, presence of SCl/PM antibodies and high inflammatory markers (I had a skin biopsy above the area of the rash which didn't show much). Diagnosis confirmed by a rheumatologist around a year later, by which time I had developed Raynaud's and obvious nailfold capillary abnormality (can see them with the naked eye). Initially, no, I did not feel particularly unwell and I did not have pain in my joints, etc, although my hands felt a bit sore. Rash was very itchy though. Biopsy was quite sore, but tolerable. I don't think the local worked when they took it, but I asked them to just carry on anyway as I just wanted it over with! Stitches just got itchy before I asked someone to take them out.

[dacharya in reply to StormySky]

You have gone through a very debilitating condition. How do you feel now after taking the medication? I also get peeling skin and skin lesions on my hands but my blood tests are coming normal. I didn't go for a biopsy yet.

I have numbness in my fingers and toes.

Which drug are you taking for Raynaud's?

[StormySky]

Initially the doctors hit it hard with high dose steroids that were decreased to 0 over around 5 months (also, antibiotics due to the infections). My skin improved quite quickly: it has never gone back to the severity it was and my breathing improved. Hand swelling took a lot longer to go down (still not 'normal' though)!

I haven't had much dermatology/rheumatology medication. Methotrexate as steroids were reduced, but I had a severe reaction (urgent care centre said allergy). Azathioprine was tried more recently (around 4 years after diagnosis) but within 3 months I became quite unwell and blood tests showed liver damage, which resolved when that was stopped. I was on hydroxychloroquine for a while, but whenever I tried to get to the required dose I was getting sick and my weight was getting too low, so that was stopped.

Primarily I have anti-inflammatory medication (etoricoxib). I also have creams/ointments for my skin. Mostly the hand symptoms have been treated by a hand therapist: initially she had to move my hands which was very painful, but now I have some independent functioning back in them. Overall, it is better than it was at onset, but I still have issues, some pain and swelling in hands, aching and weakness in forearms, poor grip strength, some limitation to movement in hands, aching joints in hands and wrists, some skin rash and peeling to hands and feet. Fatigue is now quite problematic for me and Raynaud's is quite obvious.

I have never been given medication specifically for Raynaud's.

I hope the investigations you are having can help find a solution that works for you. Good Luck!

[dacharya in reply to StormySky]

My doctor was not able to confirm whether the raynaud's that I get is because of Scleroderma because my blood report for Scleroderma is normal.

Is your Scleroderma a limited/CREST or diffused one?

[StormySky in reply to dacharya]

The consultant that diagnosed me used a table, where there are a list of symptoms that are scored (you don't need all of them), but she said blood test results are quite important.

I don't know if it is limited/CREST or diffuse. The letter from the hospital just said systemic sclerosis and included the table used for the diagnosis.

[dacharya in reply to StormySky]

But what about the medications? The doctor didn't prescribe any meds?

[Carp84]

I was diagnosed with Scleroderma in 2019, it was first brought to my attention through a blood test. Then at an appointment with a Rheumatologist he noticed little red spots on my hands and face, which is a common sympton and he confirmed it then.

[dacharya in reply to Carp84]

I also get such red spots on my hands but not very often so my doctor never noticed it. But was your blood test for Scleroderma done? Without a blood test it can't be confirmed. In which hospital it was confirmed?