Scleroderma and swelling

[Cookierey31]

My uncle is newly diagnosed with scleroderma and we are waiting for a referral to a rheumatologist. He just started having swelling I read it is common. It is frustrating as we are trying to educate ourselves more on this disease. Will a rheumatologist help manage the swelling and pain? He has so far seen a pulmonary doctor for his lungs next step is a rheumatologist. I am trying to give him as much hope as I can as I can see how depressing this is for him. He has GI issues as well he has just started mycophenalate which I posted about in a previous post.

Also has anyone here tried cbd oil and has it helped ?

[claygi]

With CREST Syndrome, I have limited scleroderma in my right hand and it swells a lot. Nothing to do really to bring it down, it just comes and goes.

[Cookierey31 in reply to claygi]

I just looked up crest syndrome , I am very unfamiliar with the different types of scleroderma. I’m hoping we will get more information once we see the rheumatologist.

[MissusTee in reply to Cookierey31]

Crest syndrome is an old term, which is a bit misleading. It's now called limited cutaneous systemic sclerosis, but that's only one type of scleroderma. There is also diffuse scleroderma, which can be very symptomatic at a much earlier stage. It may well be that until they clarify the type of scleroderma that he has, (there's also morphea, which just affects the skin), then the treatment plan will depend on this. A rheumatologist that is a scleroderma expert, should be the next stage.

[AdamRossi]

Hey, how did they diagnos him without seeing a rheumatologist? I'm interested as I know there is no blood test that can diagnose

[Cookierey31 in reply to AdamRossi]

After going to his pulmonologist they wanted a second opinion so he was referred to a specialist at UCSF in San Francisco that doctor said he was confident it was scleroderma and ordered more blood tests. Then he proceeded to say he needed to be referred to a rheumatologist. What exactly will a rheumatologist do ? We are learning as we go. Thanks in advance for any advise given

[AdamRossi in reply to Cookierey31]

Depends on symptoms. What led him to seek medical help in the first place symptom wise

[Jackiecatlady in reply to AdamRossi]

I was diagnosed with scleroderma through a blood test . Doctor said I had antibodies in my blood that were specific to systemic sclerosis .

[Maryie]

The blood test they do to confirm scleroderma is the Ana or antinuclear antibodies to see if they are positive and the scl-70. More than likely they will put him on plaquenil. Tell him to try not to worry. That makes the stress worse. I was terrified when I was diagnosed a year ago. I have changed my diet and did some research on Dr. Amy Myers website who is an autoimmune specialist. I felt like I had been given a death sentence but I am doing good. I exercise as well and take a medicine for high blood pressure even though mine is very low because it helps with blood flow. I hope this helps. My biggest symptom is feeling tired and I had the hand swelling as well. When I wake up I drink a huge glass of lemon water to give my liver some support. Things have been good for me do with some trial and error I hope he finds what works for him. Good luck with all of it. It can be okay. And my hand swelling has decreased greatly by adding some supplements and drinking water first thing. Don’t think the coffee was helping as being the first thing that hit my system.

[kimmo]

Hi. Have you looked online at the John Hopkins Scleroderma Centre? You may get further information from there. It's in Baltimore and I note you are from USA. Hope you find it useful as there are too many sites online that can scare us but this is a legitimate one.

Kim x

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[Cookierey31 in reply to kimmo]

Thank you I’m going to do that now , haven’t heard of it