CF and Sarcoidosis

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urmysunshine54

Guest
Diagnosed with CF a month ago - had a bronscoscopy w/biopsy last week, and was advised today that I also have sardcoidosis. Does any else know of or share both diseases? If so - I would soappreciate hearing about your history with them. Thanks so much, Susan
 
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urmysunshine54

Guest
Diagnosed with CF a month ago - had a bronscoscopy w/biopsy last week, and was advised today that I also have sardcoidosis. Does any else know of or share both diseases? If so - I would soappreciate hearing about your history with them. Thanks so much, Susan
 
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carmenNZ

Guest
Hi Susan,
I have CF but not saracoidosis, however, my mum was diagnosed with sarcoidosis a few years ago. She has often wondered if there is a link with the CF gene.
 
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carmenNZ

Guest
Hi Susan,
I have CF but not saracoidosis, however, my mum was diagnosed with sarcoidosis a few years ago. She has often wondered if there is a link with the CF gene.
 
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urmysunshine54

Guest
Carmen - thanks so much for responding - I have felt so alone in this. There seems to be little information on linking the two diseases, but I did found a couple people wondering about a CF link, similar to your mom. Was your mom diagnosed with CF early in life, and sarcoidosis just recently. As there are so many areas of the body that can affected by sarcoidosis (just as CF) - would you share which areas are affected? Thank you so much! Susan
 
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urmysunshine54

Guest
Carmen - thanks so much for responding - I have felt so alone in this. There seems to be little information on linking the two diseases, but I did found a couple people wondering about a CF link, similar to your mom. Was your mom diagnosed with CF early in life, and sarcoidosis just recently. As there are so many areas of the body that can affected by sarcoidosis (just as CF) - would you share which areas are affected? Thank you so much! Susan
 
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farmfamily

New member
I have two children with CF my oldest bother had CF. My mom was diagnosed with sarcoidosis years ago her Pulmologist suggested a link between the two diseases then. I could find no information. I would love to hear more.
 
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farmfamily

New member
I have two children with CF my oldest bother had CF. My mom was diagnosed with sarcoidosis years ago her Pulmologist suggested a link between the two diseases then. I could find no information. I would love to hear more.
 
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carmenNZ

Guest
Upon research my mum has also come across a few people wondering about a link. Susan- my mum doesn't have CF just the sarcoidosis. It mainly affects her lungs, though the doctors are quite useless and haven't really checked anywhere else. I think she is at stage 3? It has made her lung function about as bad as mine (~70%) and she is always quite tired. The doctors have her on long term, low dose prednisone. She has tried to come off it a few times but each time she 'flares up' again. They have suggested another drug to her except it makes her suseptible to the mycobacterium which she doesn't want to get and then pass onto me. If you like, you could contact her? She has done a lot of research on the disease and is a wealth of knowledge. Her email is sharonh@xtra.co.nz. Plus, as she is a mum of a cfer she has a lot of knowledge on CF so she could help with combining the two.
 
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carmenNZ

Guest
Upon research my mum has also come across a few people wondering about a link. Susan- my mum doesn't have CF just the sarcoidosis. It mainly affects her lungs, though the doctors are quite useless and haven't really checked anywhere else. I think she is at stage 3? It has made her lung function about as bad as mine (~70%) and she is always quite tired. The doctors have her on long term, low dose prednisone. She has tried to come off it a few times but each time she 'flares up' again. They have suggested another drug to her except it makes her suseptible to the mycobacterium which she doesn't want to get and then pass onto me. If you like, you could contact her? She has done a lot of research on the disease and is a wealth of knowledge. Her email is sharonh@xtra.co.nz. Plus, as she is a mum of a cfer she has a lot of knowledge on CF so she could help with combining the two.
 
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urmysunshine54

Guest
Carmen - thanks so much for your clarification - and it is so kind of you to provide your mom's email address. Mine is urmyshine54@gmail.com and feel free to pass it on. I'm not really sure what my questions are at this point - I have to admit I'm pretty confused with my recent diagnosis and latest illness, especially since I am pretty uneducated on both. Primarily my lungs and sinuses are impacted by the CF. My lymph nodes been enlarged for a few years - so they did a biopsy 2 weeks ago, which tested positive for sarcoidosis.

About a week ago, i was suffering with unbearable pain in my joints and muscles throughout my body. The only time I got out of bed was to go to the doc or hospital. It was suggested that it could have been a reaction to bactrim (which I was taking for another sinus infection), or my GP suggested it maybe be fibomyalgia. My CF doc said joint and muscle pain are not CF related. (although I have seen many cf'ers in this forum talk about about muscle/joint pain). I did find info on the internet that indicated these symptoms could be related to sarcoidosis...and also that fibromyalgia could result from sarcoidosis.

I thought after being sick for years and finally being diagnosed with CF at the ripe old age of 57 - a CF center would help to deal with all my health issues and help me improve my quality of life. As a result of this past week suffering with the muscle and joint pain (which is slowly improving) - I'm wondering if I need to get another specialist involved for the sarcoidosis - and if so - what kind of specialist would that be. Just trying to make sense of all this - and not doing a great job. If your mom has any suggestions - or anyone else, please let me know. With my sincere thanks and appreciation, Susan
 
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urmysunshine54

Guest
Carmen - thanks so much for your clarification - and it is so kind of you to provide your mom's email address. Mine is urmyshine54@gmail.com and feel free to pass it on. I'm not really sure what my questions are at this point - I have to admit I'm pretty confused with my recent diagnosis and latest illness, especially since I am pretty uneducated on both. Primarily my lungs and sinuses are impacted by the CF. My lymph nodes been enlarged for a few years - so they did a biopsy 2 weeks ago, which tested positive for sarcoidosis.

About a week ago, i was suffering with unbearable pain in my joints and muscles throughout my body. The only time I got out of bed was to go to the doc or hospital. It was suggested that it could have been a reaction to bactrim (which I was taking for another sinus infection), or my GP suggested it maybe be fibomyalgia. My CF doc said joint and muscle pain are not CF related. (although I have seen many cf'ers in this forum talk about about muscle/joint pain). I did find info on the internet that indicated these symptoms could be related to sarcoidosis...and also that fibromyalgia could result from sarcoidosis.

I thought after being sick for years and finally being diagnosed with CF at the ripe old age of 57 - a CF center would help to deal with all my health issues and help me improve my quality of life. As a result of this past week suffering with the muscle and joint pain (which is slowly improving) - I'm wondering if I need to get another specialist involved for the sarcoidosis - and if so - what kind of specialist would that be. Just trying to make sense of all this - and not doing a great job. If your mom has any suggestions - or anyone else, please let me know. With my sincere thanks and appreciation, Susan
 
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chicagocubsmom

New member
My son has CF, with a fairly rare mutation from my husband side. My husband's father has been suffering from sarcoidosis for many years. He's had trouble getting proper treatment because we were told it's a disease that affects primarily those of African descent and he is of Northern European descent and resides in an area with mostly Caucasian people. So the doctors have not been very helpful but he is doing okay.

When our son was diagnosed, we asked his CF doctor if there could be a link but they said they didn't think so.
 
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chicagocubsmom

New member
My son has CF, with a fairly rare mutation from my husband side. My husband's father has been suffering from sarcoidosis for many years. He's had trouble getting proper treatment because we were told it's a disease that affects primarily those of African descent and he is of Northern European descent and resides in an area with mostly Caucasian people. So the doctors have not been very helpful but he is doing okay.

When our son was diagnosed, we asked his CF doctor if there could be a link but they said they didn't think so.
 
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stephen

Guest
Susan,

I too have CF and had previous been diagnosed with Sarcoidosis.

After an abnormal chest X-ray in 1980 at the age of 39 I was diagnosed with Sarcoidosis. The diagnosis was made with the Kveim test. A 1990 chest X-ray revealed Bronchectesis, which a "quack" doctor first said it might be a flare up of the Sarcoidosis. It was not until 2005, that I was diagnosed with CF via genetic testing at National Jewish in Denver CO.

Although I had productive caught, sinus problems, and low grade fevers all my life, sweat tests were always negative. The CF diagnoses at the age of 63 was a real blessing, thank G-d. The drugs that became available have really improved my quality of life.

As far as the Sarcoidosis, I never experienced any symptoms (except for the chest X-ray) and it never required treatment. No one at the three adult CF centers in New York that I've visited ever mentioned being aware of a link between Sarcoidosis and CF.

To all: I would recommend a visit to National Jewish Health to anyone with a lung condition who wants a second (or third or fourth or ...) opinion. When I traveled to Denver in 2005, I had previously been to more than 8 specialists at major New York hospitals. That trip to Denver was a real life changer!

Stephen, 70 y/o
FEV1 48%, otherwise feel great, thank G-d.
 
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stephen

Guest
Susan,

I too have CF and had previous been diagnosed with Sarcoidosis.

After an abnormal chest X-ray in 1980 at the age of 39 I was diagnosed with Sarcoidosis. The diagnosis was made with the Kveim test. A 1990 chest X-ray revealed Bronchectesis, which a "quack" doctor first said it might be a flare up of the Sarcoidosis. It was not until 2005, that I was diagnosed with CF via genetic testing at National Jewish in Denver CO.

Although I had productive caught, sinus problems, and low grade fevers all my life, sweat tests were always negative. The CF diagnoses at the age of 63 was a real blessing, thank G-d. The drugs that became available have really improved my quality of life.

As far as the Sarcoidosis, I never experienced any symptoms (except for the chest X-ray) and it never required treatment. No one at the three adult CF centers in New York that I've visited ever mentioned being aware of a link between Sarcoidosis and CF.

To all: I would recommend a visit to National Jewish Health to anyone with a lung condition who wants a second (or third or fourth or ...) opinion. When I traveled to Denver in 2005, I had previously been to more than 8 specialists at major New York hospitals. That trip to Denver was a real life changer!

Stephen, 70 y/o
FEV1 48%, otherwise feel great, thank G-d.
 
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urmysunshine54

Guest
Stephen - thank you for letting me know. It is so encouraging to hear that you've been free from any sarcoidosis symptoms. I'll try to continue to remain positive that the diagnosis is just incidental. I'm thinking that the intense joint and muscle pain I've been dealing with over the past week may be related to something other than cf or sarcoidosis.
thanks again, Susan
 
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urmysunshine54

Guest
Stephen - thank you for letting me know. It is so encouraging to hear that you've been free from any sarcoidosis symptoms. I'll try to continue to remain positive that the diagnosis is just incidental. I'm thinking that the intense joint and muscle pain I've been dealing with over the past week may be related to something other than cf or sarcoidosis.
thanks again, Susan
 
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