CFRD

mmmtat

New member
I was diagnosed with CFRD in September, and I have gone through and read all the previous threads. It's some where between entertaining and frustrating that we all seem to be told different things about it. I do have a question though.
My dietician (who works at both my CF center, and my endo office), told me in no uncertain terms that all the oral medications used with type II, never have any accuracy with CF. But I see it frequently mentioned that people with CFRD are taking oral medications to help control. So, I'm confused, what are your doctors/dieticians telling you about the effectiveness of these meds?
I was diagnosed because I was having so many problems with my lows. My OGTT was normal, and my A1C was 5.5, but they did a week long continuous monitor and found I was having highs, in addition to my many lows. I was told to take 1/2 unit of novolog (I have the kids pen to get the 1/2 unit) with the biggest meal of the day, but even that was too much at first. Now for the past month I have been running higher, and am starting to actually take the 1/2 unit without crashing. But anyway, my point is that I take very little insulin, and my highest high was 300, but usually a high for me is 185-200.
They told me that anytime BG is over 144, it is feeding the extra sugar to the bacteria in my lungs (I culture PA), and that is why diabetes tends to cause more infections and lower PFTs. So it's quite important to stay below 144.
Anyway, with my fairly low BG, and very low dose of insulin, I would think I would be a candidate for an oral medication instead. I'm just confused because the way my dietician told it to me, it was like it was common knowledge at all CF centers that the oral meds would have no effect.
She seemed extremely knowledable about CFRD, it seemed to be her favorite area of interest, even though she works at a peds endo where they mostly see Type I. She gave me every impression of spending her Saturday nights looking up every study ever done on CFRD, and I found her very helpful, so I am inclined to believe her, but I don't know what her source was, and was just wondering if anyone else has heard this about the oral meds?
Cheers,
 

mmmtat

New member
I was diagnosed with CFRD in September, and I have gone through and read all the previous threads. It's some where between entertaining and frustrating that we all seem to be told different things about it. I do have a question though.
My dietician (who works at both my CF center, and my endo office), told me in no uncertain terms that all the oral medications used with type II, never have any accuracy with CF. But I see it frequently mentioned that people with CFRD are taking oral medications to help control. So, I'm confused, what are your doctors/dieticians telling you about the effectiveness of these meds?
I was diagnosed because I was having so many problems with my lows. My OGTT was normal, and my A1C was 5.5, but they did a week long continuous monitor and found I was having highs, in addition to my many lows. I was told to take 1/2 unit of novolog (I have the kids pen to get the 1/2 unit) with the biggest meal of the day, but even that was too much at first. Now for the past month I have been running higher, and am starting to actually take the 1/2 unit without crashing. But anyway, my point is that I take very little insulin, and my highest high was 300, but usually a high for me is 185-200.
They told me that anytime BG is over 144, it is feeding the extra sugar to the bacteria in my lungs (I culture PA), and that is why diabetes tends to cause more infections and lower PFTs. So it's quite important to stay below 144.
Anyway, with my fairly low BG, and very low dose of insulin, I would think I would be a candidate for an oral medication instead. I'm just confused because the way my dietician told it to me, it was like it was common knowledge at all CF centers that the oral meds would have no effect.
She seemed extremely knowledable about CFRD, it seemed to be her favorite area of interest, even though she works at a peds endo where they mostly see Type I. She gave me every impression of spending her Saturday nights looking up every study ever done on CFRD, and I found her very helpful, so I am inclined to believe her, but I don't know what her source was, and was just wondering if anyone else has heard this about the oral meds?
Cheers,
 

markinohio

New member
I'm not sure if this will help you, but here's what happened to me. I was diagnosed with CFRD about fifteen years ago. I started on oral meds to try and control my sugars. I don't remember what my numbers were or which meds I was on, it was a long time ago. After a few years on oral meds, my sugar level was still out of control, so I switched to insulin. I now take long lasting Lantus and fast acting Novalog. My A1C hovers between 7.0-7.5. I know that's quite a bit higher than yours, but it's about the best I can do.

I do find it curious that I also have D508 and G542X and wondered how many CFer's with that gene sequence have CFRD? It's possible that gene sequence has no correlation to CFRD.
Good luck to you.
Mark, age 43.
 

markinohio

New member
I'm not sure if this will help you, but here's what happened to me. I was diagnosed with CFRD about fifteen years ago. I started on oral meds to try and control my sugars. I don't remember what my numbers were or which meds I was on, it was a long time ago. After a few years on oral meds, my sugar level was still out of control, so I switched to insulin. I now take long lasting Lantus and fast acting Novalog. My A1C hovers between 7.0-7.5. I know that's quite a bit higher than yours, but it's about the best I can do.

I do find it curious that I also have D508 and G542X and wondered how many CFer's with that gene sequence have CFRD? It's possible that gene sequence has no correlation to CFRD.
Good luck to you.
Mark, age 43.
 

just1more

New member
Maggie, at the last CF sponsored conference on CFRD the consensus was not to use oral meds for CFRD as they were not as effective as Insulin. While this doesn't mean they can't be tried, or that they might not work but it is not supported by the CFF meaning most clinics won't even consider it.

Here is a link to a CFF manual on CFRD management, you might find it interesting read as it has great info on how CFRD is different.

http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-2011.pdf
 

just1more

New member
Maggie, at the last CF sponsored conference on CFRD the consensus was not to use oral meds for CFRD as they were not as effective as Insulin. While this doesn't mean they can't be tried, or that they might not work but it is not supported by the CFF meaning most clinics won't even consider it.

Here is a link to a CFF manual on CFRD management, you might find it interesting read as it has great info on how CFRD is different.

http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Diet/Diabetes/CFRD-Manual-2011.pdf
 

mmmtat

New member
Mark - Thanks for the response. I know of one other CFer with the same mutations, and he has CFRD as well.

Tom - That explains it! Thanks so much for the response, that was the missing piece of information I needed <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mmmtat

New member
Mark - Thanks for the response. I know of one other CFer with the same mutations, and he has CFRD as well.

Tom - That explains it! Thanks so much for the response, that was the missing piece of information I needed <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mamerth

New member
I tried metformin (oral diabetic medication). It cause more low blood sugars than anything. I have been controlling my sugars with a strict diet and have not need insulin unless I am on IV antibiotics.
 

mamerth

New member
I tried metformin (oral diabetic medication). It cause more low blood sugars than anything. I have been controlling my sugars with a strict diet and have not need insulin unless I am on IV antibiotics.
 

mmmtat

New member
what is your diet like? I don't have problems gaining weight, so restricting my diet wouldn't be a problem and I'd be curious about it, but as of now, I pretty much eat high fat and high salt.
 

mmmtat

New member
what is your diet like? I don't have problems gaining weight, so restricting my diet wouldn't be a problem and I'd be curious about it, but as of now, I pretty much eat high fat and high salt.
 
Top