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Post by davessister on Jan 2, 2014 12:09:00 GMT -5
My brother, Dave, was diagnosed with systemic Scleroderma and related interstitial lung disease in 2011. Recently he has been coughing up blood, so his MD prescribed prednisone 30 mg and after 3-4 days it resolved, and he decreased down to 10 mg. He is starting to cough up blood again so the on call MD increased prednisone to 30 mg again. He had a bronchoscopy earlier this month and they couldn't determine where blood was coming from. They think it may be telangectasis.
Has anyone had a similar problem and if so, how did they resolve it? I know this is really scary for him and I want to help him if possible. He lives in MN and I know the cold weather is really hard for him. I also wondered how much moving to a warm climate would benefit him? Has anyone moved from cold to warm place after diagnosis, and if so, how big of a difference did it make in their disease?
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Post by Nancy - South Jersey on Jan 2, 2014 17:43:06 GMT -5
davesister: Sorry to hear your brother is having problems. I can't give you any input on this, but I'm sure someone will chime in. Will pray for Dave that the doctors will have the wisdom of being able to pinpoint the exact cause of him coughing up blood and give him the correct treatment that will help to prevent it. All kinds of lousy stuff pops up with this disease. Hugs to you and your brother. You're a nice, caring sister!
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Post by christel on Jan 2, 2014 19:41:04 GMT -5
I agree with Nancy. I have also not heard of this but many things are possible in dealing with such an odd and varying disease! Perhaps we will all learn something new...
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Post by davessister on Jan 2, 2014 20:32:49 GMT -5
Thank you ladies, hopefully someone will have some insight. In the meantime, I will continue to pray!
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Post by jeffn on Jan 2, 2014 21:10:14 GMT -5
First off welcome!
As a result of my SD I had both bleeding in my stomach (GAVE) and suffered nose bleeds for over a year. To my knowledge I had not had any lung issues but it makes sense, to me anyway, that that the same mechanism that caused my GAVE and nose bleeds might be responsible for your brothers issues. IIRC the Pred. combats inflammation and for your brother it was working. How long does his doc intend to treat him longer term? What meds is he on for the treatment of his SD? I found that my nosebleeds were worse in dry air. We spend weekends in the winter in VT, think dry and cold, and my nosebleeds were worse there. Just a guess but is it possible the dry air is effecting his lungs? Would a humidifier help perhaps. You might run this by his doc. I used to SCUBA dive frequently and the moisture is filtered out of the air used to fill the tank and breathing the dry air pulls fluid out of the body. I would be very dehydrated after a day of multiple dives. No bleeding from the lungs but the more water I drank after the better I felt. Occasionally I would have a nosebleed after a dive. Hopefully they can find the cause and location of your brothers bleeding.
In my opinion the warm climate move can be a two edged sword for some. Over the years there have been many discussions about this on different boards. Folks that lived in cold places and relocated to warm areas often have trouble with the air conditioning in their new warm/hot location. For me a move to a warmer location would be welcome. I have Raynaud's but it has to get cold and damp before I get an attack. AC does not cause me any problems so I think a warmer, not necessarily hot, place would be a nice change. Since the onset of SD I have an entirely new outlook on summer as my hands never ache and in general I just feel better. Jan. Feb. and March are a different story. If your brother is contemplating a move trying some different areas may be a good idea if possible. Easier said than done though.
Please let us know how your brother makes out and what they are treating him with.
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Post by jeffn on Jan 11, 2014 15:39:40 GMT -5
Any updates DS? What did they find out?
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Post by grammie on Jan 24, 2014 10:55:12 GMT -5
I was wondering too. grammie
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