Scleroderma (Systemic Sclerosis): Anyone else?

Hello,I was recently diagnosed with scleroderma and it seems to be progressing rather quickly. Any suggestions or places I can get support? It is very scary.

I am in the process of being tested for this as well and will definitely follow up with you .

Hi @eghclark and @jennyt23, I moved your messages to this discussion in the Autoimmune Diseases group
- Scleroderma (Systemic Sclerosis): Anyone else? https://connect.mayoclinic.org/discussion/sclerodermasystemic-sclerosis/

I did this so you can easily connect with other members living with scleroderma like @kimberlyf @shiprock @robinlundblade @andielars25 @sonnyforee10 @2beaformerredhead @gila @csmirat and many others.

See all scleroderma-related discussions: https://connect.mayoclinic.org/search/discussions/

@eghclark, this sounds like a new diagnosis for you. Can you share a bit more? What symptoms led to the diagnosis? How are you doing?

@jennyt23, what testing are you having done? What led to your doctor suspecting scleroderma? I know this is scary.

Me too. There are 2 types I have systemic how about you? What new symptoms are having thinking it’s getting worse? I wish I could tell you more about but I’m still figuring it out too. Keep in touch and let me know about my questions. Thanks

Will finally see the rheumatologist this coming week...I have many symptoms starting with Raynauds phenomenon , GERDS, syncope, tinnitis, sensorineural hearing loss, CKD & I also have severe latex -fruit syndrome but fortunately am relatively pain free and am functioning fairly well given my advanced age of 87.

Hi,my name is Lisa and I have been diagnosed with Scleroderma since 2015. I see a hematologist, dermatologist, GI, Endocrinologist, Rheumatologist and an Orthopedic doctor.

At the age of 3, I was diagnosed with Eczema/Atopic Dermatitis. I am about to be 63 in October. Been able to manage mine with medication and creams. I have had several biopsies.

I saw a rheumatologist 3 years ago with an ANA SCL70 positive systemic ( saw him on a TV as he also works at a VA in NY) .. he had prescribed hydroquieclorphine (SP?) but said It was a miracle I really didn't have it ..no meds required..( so I threw them out)..same thing the nest year..this year I saw his new assistant who said they couldn't rule it out..I said well shouldn't I be losing weight (I had gotten down to 98 lbs..Have been to several gastros and now I have gained to much weight (157) .. this dr said "not necessarily,,so then I asked him.. so then my kidneys or my heart will fail..(It systemic homogenous titer)..and he said yes.. they were very busy .had an appt in 15 min to get a contract with the Cherokee Nation to see people..now when I call.. he is too busy ..uh oh!! I don't see him til next Feb..this is Sept.. am going to a nephrologist soon.. have had alot of kidney stones.. so that's where I'm at..I'm 71 and widowed..I can eat more things now.. they fixed the pyloric stenosis.. we don't have many rhumatologist here.. very rural..only him (30 mi away) and 1 in Tulsa (5 quit or retired last year 90 miles each way) and there are 3 I think in Oklahoma City..and 1 in FT Smith.. (OKC is 3 hrs each way and FT Smith an hour)..I don't know what to do ..except pray!! Jesus is the healer!! Praying for you all to.. for good understanding and..good doctors..God help us!!

Does anyone have an alternative method to reduce inflammation, in combination with Mycophenolate?

@itat
Mycophenolate can be given together with methotrexate (RA), or other drugs like Humira (RA, Crohn's), Ofev (ILD), or Actemra (RA, ILD). Another simple alternative would be to try Ibuprofen. Low dose prednisone may also be prescribed for inflammation.

It all depends on your symptoms. Some scleroderma patients have only skin involvement, others Raynaud's, skin and lung, and others have joints, skin, and GI involvement, with possible progression to kidney. Peripheral neuropathy also may develop in the course of the disease (prednisone). Better to talk to your rheumatologist, if Mycophenolate alone is not working.

@eghclark Good morning, I am so sorry to hear that! I too was diagnosed with Systemic Sclerosis a couple of months ago. I've been battling strange symptoms for a few years now. My new rheumatologist prescribed Mycophenolate for now. I have not noticed any real difference, but she believes it'll be a long term medication. My worse symptoms are burning in my head, mouth and legs. What symptoms are you dealing with?
Have you checked out the National Scleroderma Foundation? They have lots of information.
I pray you find some peace and comfort.