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Newly Diagnosed - Systemic Scleroderma


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I am new to this site and newly diagnosed with Systemic Scleroderma. As probably everyone of you, I have a million questions.

 

About 2 months ago I saw some excessive hair loss and decided to go to the dermatologist who then referred me to a rheumatologist based on my high ANA numbers, where I was confirmed with Systemic Scleroderma. My doctor ordered internal functional tests as well as an endoscopy since I have had GERD for many years. All tests came back good, GI doctor found intestinal metaplasia. He gave me pantoprazole and said to come back in a year for another endoscopy. Found a year to be too much time to wait to do another endoscopy so getting another opinion on that. My rheumatologist prescribed 500 mg CellCept (4 a day).

 

Around this time I started feeling an unexplainable feeling almost like a tingling/tightening (sensitivity) on and off in parts in my face, forearm and thighs, it is also often itchy. I even wake up with my hands tingling. Strange that I was JUST diagnosed and I am feeling weird things already. I was assuming it was the Cellcept so my doctor said to stop it for a week to see if it goes away but it didn't, so I started to take it again. I then thought it could have been side effects from the pantoprazole so I stopped taking that for a while as well but this feeling didn't go away. I even started feeling that my skin is looking crepe-like in my hands thighs and calfs with noticeable muscle loss (possibly muscle atrophy). I went to a neurologist and they will be doing some nerve testing next week. I have also had a sore throat since around the time diagnosed as well, with periodic burning sensation on my tongue and bumps on the side and back of my tongue. I live in Tampa Florida and there are really no Scleroderma specialists here, so I made an appointment at Mayo Clinic for next week; hopefully I can get some real answers and even a second opinion on this disease as I know these auto immune diseases can often be misdiagnosed.

 

I am wondering has anyone else had any of these symptoms, if so, would love to learn more about them. I am not sure if this is related to medications or truly symptoms of this disease.

Thank you!!

 

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Hi Mary,

 

Welcome to these forums.

 

I'm sorry to hear that you've been recently diagnosed with systemic scleroderma. I'm pleased that you're consulting the Mayo Clinic as the expert rheumatologists there are really the best people to give you specialist advice and help.

 

I've included a link to our medical pages, to give you some more information.

 

Kind regards,

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  • 5 months later...

Scleroderma and Stem Cell Immune system transplant.

Hi,  I'm Bob survivor of systemic scleroderma disease diagnosed 6 years back in 2014. My first symptoms where  Raynaud's effect in my fingers noticed in 2012. Fingers going cold quick at any low temperature. By 2014 I developed painful  tingling and in my hands. Rheumatologist diagnosed diffused systemic scleroderma.  I was placed on autoimmune system suppressants like prednisone. Although pain in my hands went away I started to develop ulcers on my fingers. Due to blood flow restriction you lose some finger tip flesh dying off.  2017 almost lost hand finger to bad ulcer and potential gangrene. Spring of 2018 lung capacity tests showed significant loss of lung capacity and scleroderma skin swell over my hands, face, chest was much visible.  My rheumatologist offered next stage treatment to chose from. Both involved heavy doses of chemotherapy using IV Cyclophosphamide treatment.  Conventional one and a new one involving stem cells immune system transplant.  I knew conventional treatment success rate was not high.

I opted for Immune system transplant that was pioneered in Ottawa since 2012. To qualify you need to pass medical acceptance. 6 months later got my first appointment in Ottawa General. It took 60 days of medical examinations and testing  to be OK by all specialist for this procedure. Then was some wait for stem cell harvesting appointment with one chemotherapy treatment.   After mandatory 30 days recovery my transplant started in June 2019.  By this time I was in bad shape. Had only 35% vital lung capacity. My entire body and chest skin hardened and was limiting my breathing.  I could only walk 300 feet needed to rest. (Keep in mind only 6-7 years back at 58 I was climbing British Columbia mountains).

Today Feb 2021  one year and half since my immune system transplant my body slowly recovers. I can fully clinch my left fist and hold cutting knife in my right hand. Hope one day I will be capable to clinch right hand too. I am able to go food shopping and run my fishing charter business on Lake Ontario.

This was close call. Ottawa General hospital medical stuff gave me a second chance.

Depending on your age, your health condition, country you live in this treatment may be or not available to you. Immune system transplant in USA will cost $150K.

 

  

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Hi Bob,

 

Welcome to these forums.

 

I'm very pleased to hear that you've had a successful transplant and do hope that you continue to improve.

 

Kind regards,

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Hi Dimarzio,

 

So sorry, I've no idea whether the stem cell transplant is available in the UK.

 

I would imagine the NHS would be pretty much a no-no, as they seem to be incapable of dealing with anything other than Covid-19 at present. :dont-know: Probably the best person to ask would be your consultant (I expect you've thought of that already.)

 

Kind regards,

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