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I hope some of you can give me helpful information. My brother has been diagnosed with several auto immune diseases. One of them is Raynauds. Right now his fingers are in a terrible condition: black, drainage from around the nail, sensitivity in the fingers, etc. They are a mess. He is wearing gloves, on several medications and is being seen by a rheumatologist. Do any of you have this type of condition with your fingers and to the extreme like his fingers. We are very concerned that he may lose some of his fingers by just the appearance. Any helpful comments in this area would be greatly appreciated. Thanks

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Hi Paula,

 

Welcome to Sclero Forums! I'm sorry you have concerns about your brother's health and I hope his situation improves in the near future.

 

As it happens, Raynaud'scan sometimes lead to digital ulcers and even gangrene (death of tissue) and amputation. Your brother should be seeking out the very best possible care for his condition, for example, at your nearest major medical teaching hospital.

 

It is often not enough to just wear gloves and take medications. It usually requires staying warm from head to toe, all the time, whatever that takes. It also requires avoiding all vasoconstrictors, such as caffeine and nicotine, especially when such severe complications are emerging. Some people with Raynaud's can eek by with caffeine occasionally, but nobody with severe Raynaud's, such as this, should be tempting fate even for a minute. Look at our section on Raynaud's Prevention and Raynaud's Rewarming for additional ideas. Go through all his medications -- both prescribed and over-the-counter -- with his pharmacist and make sure that none of them cause or worsen vasoconstriction; do not rely on his doctor to have already thought of this.

 

I must stress, it is not normal to have black skin and drainage from nails. By any standard, it would be a medical emergency, if it has not already been attended to, and like you suspect, he may be in great danger of amputation if this isn't brought under control in the near future. He may also need to be consulting a scleroderma expert to see if his condition is complicated by that.

 

I'm sorry his situation is so worrisome. I'm sending extra warm hugs for you.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Thanks Shelley!!! He was diagnosed at a teaching hospital. He had an appointment 3 weeks ago and they saw the condition his fingers are in and did nothing. He saw his family practice (FP) doctor today and it sounds like he is getting involved in the care of his hands. I am so disgusted. The teaching hospital was able to diagnose his autoimmune symptoms but I am not impressed with his aftercare.

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Hi Paula,

 

Oh my goodness. Somebody has to get on top of this and stay on top of this.

 

What they say about digital ulcers is, "If it's not healing -- it's getting worse!" so keep that in mind and stay as involved in his care as you can.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I just talked to my brother and his wife. He went to his FP doctor for a kidney infection and his fingers. The FP doctor was very upset that nothing was being done for his fingers. He will be contacting the group of doctors at the teaching hospital to get up to speed on his case. He prescribed antibiotics for his fingers and medication for his kidneys - both medications should help his fingers.

 

The teaching hospital we were pleased with because they were able to diagnose his medical problem but the after care and followup appointments we have not been pleased with. I'm pretty sure he will be changing doctors.

 

You are right, we have to stay on top of this and keep the doctors involved in his case and get the treatment he needs. Between his wife and I, we will get it done!!!!!!

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Hi Paula,

 

Welcome to these forums!

 

I'm sorry to hear that your brother is suffering so much with Raynaud's and now has a kidney infection, which must be very debilitating. Even though he was diagnosed by the teaching hospital, it's such a shame that he's now not getting the after care he needs. However, he's lucky to have you and his wife on his case and I hope that he feels better very soon.

 

Please do keep posting and let us know how he's faring.

 

Kind regards


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Paula,

 

I'm very relieved to hear that his doctor is taking the situation seriously. Kudos to all of you for paying serious attention to it. Keep us posted on progress, okay?

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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