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

Answered by
Dr. Anshul Varshney
and medically reviewed by iCliniq medical review team.
This is a premium question & answer published on Jul 07, 2015 and last reviewed on: Jan 16, 2019

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 the 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 the generalized edema. It has started about 4 years ago and has gotten severely worse. Since then, I have been prescribed diuretics from 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, have 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 the patients with systemic sclerosis. If it is so, is there any effective treatments for the water retention other than diuretics? Is there anything that I can recommend my doctor that will aid me in dropping this water weight and keeping it off?

Dr. Anshul Varshney

Critical Care Physician Diabetology General Medicine Internal Medicine Medical Gastroenterology Nephrology Pulmonology (Asthma Doctors) Rheumatology
#

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 apply them to massage over the extremities. This is a very economic and effective treatment.

Now, as far as water retention is considered, this can occur in two cases:

  1. As a result of kidney involvement.
  2. As a result of pulmonary artery hypertension caused secondary to interstitial lung disease, which was secondary to systemic sclerosis.

So, I would recommend you to get the following tests done:

  1. Echo.
  2. HRCT (High-Resolution Computed Tomography) chest.
  3. Kidney function tests.

I hope, these investigations will be of great help.


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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.

Dr. Anshul Varshney

Critical Care Physician Diabetology General Medicine Internal Medicine Medical Gastroenterology Nephrology Pulmonology (Asthma Doctors) Rheumatology
#

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.


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