They keep telling me I'll likely get listed at one these future quarterly appointments...<div><br></div><div>I've found I feel much better on prednisone and stay out of hospital longer. My CF doc wants to take me off it for fear of side effects (blood sugars, bone density, lowered immune system). He says it's not common to prescribe simply because it makes me feel and eat better. </div><div><br></div><div>I'm wondering how many of you were on it pre-transplant? What dose? Did you notice a difference in how you felt? Has it affected your bone density? (I'm not worried about the sugars as I've been diabetic for 6 years and even when on 5-10 mg prednisone my A1c's around 6 with adjusted carb ratio.)</div><div><br></div><div>Thanks!</div><div><br></div><div>-Jason</div>
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prednisone pre-transplant
- Thread starter JT
- Start date
They keep telling me I'll likely get listed at one these future quarterly appointments...<br>I've found I feel much better on prednisone and stay out of hospital longer. My CF doc wants to take me off it for fear of side effects (blood sugars, bone density, lowered immune system). He says it's not common to prescribe simply because it makes me feel and eat better.<br>I'm wondering how many of you were on it pre-transplant? What dose? Did you notice a difference in how you felt? Has it affected your bone density? (I'm not worried about the sugars as I've been diabetic for 6 years and even when on 5-10 mg prednisone my A1c's around 6 with adjusted carb ratio.)<br>Thanks!<br>-Jason
They keep telling me I'll likely get listed at one these future quarterly appointments...<br>I've found I feel much better on prednisone and stay out of hospital longer. My CF doc wants to take me off it for fear of side effects (blood sugars, bone density, lowered immune system). He says it's not common to prescribe simply because it makes me feel and eat better.<br>I'm wondering how many of you were on it pre-transplant? What dose? Did you notice a difference in how you felt? Has it affected your bone density? (I'm not worried about the sugars as I've been diabetic for 6 years and even when on 5-10 mg prednisone my A1c's around 6 with adjusted carb ratio.)<br>Thanks!<br>-Jason
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
<br />
<br />I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
<br />
<br />I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I was not on it before tx except when I had some auto-immune issues and then I would take 40mg a day for 10 days. I do remember my docs worrying about side effects if I took it any longer than those few days each time.
<br />
<br />I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
<br />
<br />I am on it for life after transplant (5mg/day) though because it is part of the anti-rejection cocktail. For me, after tx, my sugars and BP soared because of the drugs. I am now on insulin and several BP meds to control them. I don't know if that helps or not.
I used to take prednisone pretty much whenever I had a more stubborn/severe exacerbation. I started at 40 mgs and would taper down in 10 mg intervals over a few weeks. I loved it, too! Apparently, that's pretty uncommon as at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly).
I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
I used to take prednisone pretty much whenever I had a more stubborn/severe exacerbation. I started at 40 mgs and would taper down in 10 mg intervals over a few weeks. I loved it, too! Apparently, that's pretty uncommon as at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly).
I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
I used to take prednisone pretty much whenever I had a more stubborn/severe exacerbation. I started at 40 mgs and would taper down in 10 mg intervals over a few weeks. I loved it, too! Apparently, that's pretty uncommon as at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly).
<br />
<br />I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
<br />
<br />I haven't taken prednisone in a couple of years because, while I was on it, I started growing an invasive mold in my lungs. It was decided that I needed to stop suppressing my immune system. Since I am still growing the mold (although much less, and it seems to be floating around instead of forming puff balls in my lungs), my doc doesn't want me to take it. Probably not a bad thing since the higher doses spiked my sugars and recently I found out that I have osteopenia in my hips. But I know exactly how you feel. I must say that I miss the stuff.
Thank you both for your words. It's helpful to hear your stories.
"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
Thank you both for your words. It's helpful to hear your stories.
"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
Thank you both for your words. It's helpful to hear your stories.
<br />
<br />"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
<br />
<br />That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
<br />
<br />"at my last tx educational seminar (I'm pre-tx) everyone in the crowd groaned when the pharmacist said we would be on it forever (I cheered quietly)"
<br />
<br />That cracked me up. I was just admitted and my doc said he's going to put me back on prednisone just for the exacerbation. I couldn't hold back my smirk which turned into raising my arms in the air and shouting woo HOO.
Ltlave1114
New member
I am actually beginning the process of trying to get a lung transplant. My FEV1 is 15 and I have found that higher doses of prednisone help me a lot. My doctor put me on 50 mg for 5 days, and while I was on it, I actually felt like I didn't have a lung disease. It was that much better. My doctors are worried about keeping me on it due to the side effects, but my thing is, if it makes my quality of life that much better right now, why should it matter? I have really been wondering if other CF patients have had the same positive response to it as I have....
Ltlave1114
New member
I am actually beginning the process of trying to get a lung transplant. My FEV1 is 15 and I have found that higher doses of prednisone help me a lot. My doctor put me on 50 mg for 5 days, and while I was on it, I actually felt like I didn't have a lung disease. It was that much better. My doctors are worried about keeping me on it due to the side effects, but my thing is, if it makes my quality of life that much better right now, why should it matter? I have really been wondering if other CF patients have had the same positive response to it as I have....
Ltlave1114
New member
I am actually beginning the process of trying to get a lung transplant. My FEV1 is 15 and I have found that higher doses of prednisone help me a lot. My doctor put me on 50 mg for 5 days, and while I was on it, I actually felt like I didn't have a lung disease. It was that much better. My doctors are worried about keeping me on it due to the side effects, but my thing is, if it makes my quality of life that much better right now, why should it matter? I have really been wondering if other CF patients have had the same positive response to it as I have....
aquafish2425
New member
I am pre TX and have been on prednisone for over a month and I have to say i hate it! I feel puffy and shaky all the time. The thought of being on it permanently after TX scares me. My blood sugars are out of control and I constantly have these horrible headaches. I had a PV1 of 18 when I started and now I'm down to 14, yet still we continue with this treatment. I'm not happy.
aquafish2425
New member
I am pre TX and have been on prednisone for over a month and I have to say i hate it! I feel puffy and shaky all the time. The thought of being on it permanently after TX scares me. My blood sugars are out of control and I constantly have these horrible headaches. I had a PV1 of 18 when I started and now I'm down to 14, yet still we continue with this treatment. I'm not happy.