HomeAnswersRheumatologysystemic sclerosisPlease give me advice on treating systemic sclerosis.

I was diagnosed with systemic sclerosis.Could you please give advice on how to treat these symptoms?

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Published At July 7, 2015
Reviewed AtJuly 10, 2023

Patient's Query

Hello doctor,

I am a 25-year-old male. I was recently diagnosed with an autoimmune disease called systemic sclerosis. I have been experiencing a couple of symptoms along with this disease. Could you please give me some advice on how to treat these symptoms, which I could pass on to my regular doctor? First is Raynaud's phenomenon, this is not crucial as I do not experience this as much anymore, making sure my hands are always kept warm. But, if you have any other suggestions I would like to hear them. The one symptom that I am most concerned with is generalized edema. It started about four years ago and has gotten severely worse. Since then, I have been prescribed diuretics by my doctor. But, whenever I take them I will go through a process of losing about 10-15 lbs in water weight, then after a week of no drug or diet change, I used to go back to the same state as I was before taking the diuretics and sometimes much worse. My doctors and I think that this may be due to my capillaries being "leaky" and this leaking protein might surround the body tissue area. When I take the diuretics, my body flushes out the water, but at the same time the protein in the area senses a loss of water and sucks in more from my bloodstream by replacing the water I had just lost. However, my doctors are not quite entirely sure that, if this is, in fact, the root problem with water retention. I have kept a very strict diet when it comes to sodium and other things of that nature. Anything of a personal nature that comes to solving this problem that I have tried, has had no successful outcomes. I wanted to know if this is a case you have seen in many other patients with an autoimmune disease, especially patients with systemic sclerosis. If it is so, are there any effective treatments for water retention other than diuretics? Is there anything that I can recommend to my doctor that will aid me in dropping this water weight and keeping it off?

Hi,

Welcome to icliniq.com.

According to my opinion, Raynaud's phenomenon is a part of CREST syndrome of systemic sclerosis. In case that is troubling you, the best treatment that I have found very successful is the use of crushed Sorbitrate tablets in coconut oil and applying them to massage over the extremities. This is a very economical and effective treatment. Now, as far as water retention is considered, this can occur in two cases: As a result of kidney involvement. As a result of pulmonary artery hypertension was caused secondary to interstitial lung disease, which was secondary to systemic sclerosis. So, I would recommend you get the following tests done:

Echocardiogram

HRCT (high-resolution computed tomography) chest.

Kidney function tests.

I hope these investigations will be of great help.

Patient's Query

Thank you doctor,

I have underwent an echo. Everything seemed to be fine in that area. That is why they looked at my capillaries being a source of the problem. Please advice.

Hello,

Welcome back to icliniq.com.

In that case, there is no specific treatment. You just need a low salt diet and a restricted water intake. There is no such treatment for capillary leak and it might be idiopathic systemic capillary leak syndrome. However, I would like to see all your reports once.

Same symptoms don't mean you have the same problem. Consult a doctor now!

Dr. Anshul Varshney
Dr. Anshul Varshney

Internal Medicine

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