What Is Limited Scleroderma?

Answer 1

I have systemic scleroderma. I was diagnosed in 2002.   It is now 2019 that is 17 years with this disease. I am 72 years old.  And my Rumotologist said I probably had 7 years left?  My skin on my hands is shiny and I have red marks on my face, chest, arm and hands. I also have pulmonary hypertension. I have never taken any medication for my scleroderma. However I have taken bata blockers for the blood pressure in my lungs.  I’ve had 3 flare ups. The first put me in hospital. Second I stayed at home but it took me 4 weeks to get over it? The 3rd was last week but was not as bad as the first two.  I actually think it’s because I started on the Niacin and the rest of the vitamins? Time will tell but my hair is stopped falling out and my skin is looking better. When I was in the hospital   They diagnosed me with A-Fib heart. So they put me on a Beta blocker Sotolo and plavix blood thinner.  I was on those meds from Aug 2018 till
Feb 2019. I asked my cardiologist if I could get off of those meds and go on natural vitamins for the heart and blood presssure. He told me he would support me in whatever I chose to do. He knows I am a high risk for stroke. But the meds weren’t really helping me? I have a low platelet count so my doctor couldn’t put me on a stronger blood thinner because of my platelet count. So in reality the Plavix wasn’t helping me either. So I wanted to go natural since my outcome with meds wasn’t helping anyway? I’ve  been on no-flush Niacin, 525mg, Vitimin E 400iu
Lecethin 1200 mg,and kyolic which is garlic, hawthorn, cayenne. For 2 going into 3 weeks now. So far I have a lot more energy.  My balance problems are better. My hair has stopped falling out. And I feel good. Now I did have a few days with a flare up? But it was very light weight and I got over it fast. I’m hoping this will help me live another 17 years. Time will tell and I am not suggesting this for anyone else? It’s just that I didn’t have many options?

Comments

I am glad to hear that you are getting better. Any treatment isn't effective 100%. Any treatment must weigh the pros and cons, and the doctor will respect your choice. The drug treatment of pulmonary hypertension is limited, but atrial fibrillation will definitely increase the risk of stroke. As for the peppers you said, there is no evidence. Since you feel good, you can apply.

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I have pulmonary hypertension being treated with Sildenafil Citrate 20mg tabs, 3 time a day

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Hi Merry
I lost my mom to limited scleroderma. She never went to the doctors until it was to late. Read your story and was curious about it. My mom passed at 77 and they told us she had it for 25 years. Are there any obvious major signs.? Do you know if it is hereditary?  How are you doing today it’s been over a year since your story about changing your meds.

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Hi, Brenda.
I understand your feelings about whether to have it or not. I was diagnosed with limited scleroderma in my 70s and before the symptoms were hard to be noticed. I found that signs and symptoms of limited scleroderma usually developed gradually. I had shiny skins and red spots on my arms and legs. Besides, Raynaud's phenomena happened and the skin turned white before becoming blue, cold, and numb. I was told that this disease had something to do with genetics and I wasn't sure about it. When my daughter was in her 20s, she had primary Raynaud's, but that was common in girls in their teens/20s. I suggest you don't need to scare yourself in the first place. Remembering some basic symptoms is enough for you. And if in the future you become sick without understanding why, you should tell the doctor about your mom's disease and seek immediate medical support. Wish it will help!!