PM Scl 100: Hello lovely peopleGot my... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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PM Scl 100

Brychni profile image
5 Replies

Hello lovely peopleGot my blood results back from rheumatology today, they were looking for scleroderma because of my worsening Raynaud's and finger ulcers. Thankfully I tested negative for everything except the one in the title : PM Scl 100. Does anyone know what this means, if anything. To recap I am:

ANA positive

Anti phospholipid IgG positive

Permanently low platelets

Edit: also high immunoglobulin IgM

Raynaud's

Undifferentiated Inflammatory arthritis, connective tissue and lupus (or so it says on my notes)

Thanks in advance.

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Brychni profile image
Brychni
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skinnynow profile image
skinnynow

Hi, i been diagnosed with pm/scl 75 and 100.

System sclerosis overlaps with myositis…

Involve minor skin problems, lungs I have in bad condition, muscles distorted- I lost 20 kg of muscles… swallowing problems…joint pain, reflux.

OldTed60 profile image
OldTed60

Depending on whether it’s high titre and not a false positive then it looks like Myositis - Polymyositis specifically - I believe.

Lupiknits profile image
Lupiknits

I have both pm/scl 75 and 100. Scl 75 was there from the first blood test and for quite some time I was treated ( particularly for Raynaud’s) but letters described UCTD too.

The overall symptoms increased so I was given a definite diagnosis of systemic sclerosis. Over much of the past year I’ve deteriorated even more and they’ve added dermatomyositis to the brew.

In my case I can understand the UCTD to start with: watching and waiting ( with appropriate treatment at that time) is appropriate to my unmedical mind.

Brychni profile image
Brychni in reply toLupiknits

Hi Lupiknits, how quickly did your symptoms increase? And what were they?It's no understatement to say I'm driving myself mad with questions.

Next hospital appointment in just over a week but it's a test so I won't get any answers then.

Thanks 😊

Lupiknits profile image
Lupiknits

The full picture took some time. In the beginning they acknowledged UCTD through the bloods and Raynaud’s through observation ( I just thought I had cold hands). At that time I also had had severe GERD and had lost a great deal of weight.

It was during lockdown that I can spot the worsening. My hands thickened and I started Iloprost because oral meds lowered my blood pressure significantly: with Iloprost it’s monitored. Around that time my feet started thickening as did the area of my legs up to my knees. Neuropathy in that area started too. It’s been the last three years that I’ve been unable to wear socks or shoes. It’s more than the skin: it seems to be full tissue thickness below. I was tested for lymphadema (sp) because it doesn’t look like typical scleroderma.

My consultant’s letters started stating scleroderma and systemic sclerosis in about 2021. I was asked to take part in research well before that, mainly because of the Raynaud’s.

I hope this helps and that you get some help x

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