Re: Prednisone and transplant

[Guest guest]

After reading all of the posts about the horrors of prednison, my husband had decided he wanted nothing to do with it. His pulmonary Dr., however, says that when the transplant team has him come up to Cleveland in a few weeks to see if he qualifies, they will probably expect him to complete a trial series of medication before being listed. Dr. Graham thinks it will probably be prednisone and something else. Those of you that have already had appointments with tx Drs., is this typical? We were really hoping to avoid the prednisone, but if that's what they want, Hubby is willing to do anything for the transplant. Chris

When I went to Dallas for my transplant evaluation in November, my pulmonologist had me on 40mg daily. My last visit with him before the eveluation, he said he wanted to drop the dosage down to 20mgs a day. As the evaluation team wanted did not want a prospect on such a high dosage. But they did expect the patient to be on some amount of prednisone. That's the only experience I had regarding the requirement of prednisone for the prospective transplant patients. Good luck and God's wisdom and knowledge be with you.

kiss kiss,

~Ginger~

[Guest guest]

Yes My Tx Dr said if and when I get a new lung I would probably be on low dose prednisone for a while, But there are a lot of anti-rejection drugs. I don't know much about that yet. His Tx DR. will tell him all about it. God Bless you both I'll be praying for you. God's Will Be Done. Peggy

on 3/22/06 8:43 PM, at cmjonesohio@... wrote:

After reading all of the posts about the horrors of prednison, my

husband had decided he wanted nothing to do with it. His pulmonary

Dr., however, says that when the transplant team has him come up to

Cleveland in a few weeks to see if he qualifies, they will probably

expect him to complete a trial series of medication before being

listed. Dr. Graham thinks it will probably be prednisone and something

else. Those of you that have already had appointments with tx Drs., is

this typical? We were really hoping to avoid the prednisone, but if

that's what they want, Hubby is willing to do anything for the

transplant.

Chris

[Guest guest]

Prednisone is not a horrible drug...it has helped to keep many people with different diseases alive....I think what has been discussed here is that prednisone does not seem to have any benefits for people with PF. This makes sense, since it is used as an anti inflammatory medication....if there is no inflammation in the lungs, there is no point in using it. It does have side effects, but all drugs do.

Also, in the past few years, doctors are learning that there are more side effects with prednisone that they didn't know about. But, I think that is true of many drugs...if it's used a lot, more is learned about it...some good...some not!

The best thing to do is to talk with your physician....everyone is different...I'd hate to think that anyone would refuse a medication without knowing all the benefits and side effects.

If you are considering transplant, their protocol is very strict...predisone is probably used in many of them...but transplant patients need to take many medications every day.

--Diane Quinlan dianequinlan@...

[Guest guest]

Peggy,

Thanks so much for answering. I knew Hubby would

be on all sorts of drugs AFTER a transplant, but his

pulmonologist thinks he'll be required to try certain

meds for around 6 months BEFORE any transplant. Is

your Tx doctor running you through any 'clinical

trials' or anything like that to fulfill a requirement

for being on the list?

Chris

--- Peggy wrote:

> Yes My Tx Dr said if and when I get a new

> lung I would probably be on

> low dose prednisone for a while, But there are a lot

> of anti-rejection

> drugs. I don't know much about that yet. His Tx DR.

> will tell him all about

> it. God Bless you both I'll be praying for you.

> God's Will Be Done. Peggy

>

>

> on 3/22/06 8:43 PM, at cmjonesohio@...

> wrote:

>

> After reading all of the posts about the horrors

> of prednison, my

> husband had decided he wanted nothing to do with it.

> His pulmonary

> Dr., however, says that when the transplant team has

> him come up to

> Cleveland in a few weeks to see if he qualifies,

> they will probably

> expect him to complete a trial series of medication

> before being

> listed. Dr. Graham thinks it will probably be

> prednisone and something

> else. Those of you that have already had

> appointments with tx Drs., is

> this typical? We were really hoping to avoid the

> prednisone, but if

> that's what they want, Hubby is willing to do

> anything for the

> transplant.

> Chris

>

>

>

>

>

>

[Guest guest]

No right now I am waiting until I can go through PT ( which I hate ) lol I also have have to loose 40 to 50 lbs. I am so sore there is no way I could do PT right now, soon I hope. God Bless Peggy

on 3/22/06 10:11 PM, at cmjonesohio@... wrote:

Peggy,

Thanks so much for answering. I knew Hubby would

be on all sorts of drugs AFTER a transplant, but his

pulmonologist thinks he'll be required to try certain

meds for around 6 months BEFORE any transplant. Is

your Tx doctor running you through any 'clinical

trials' or anything like that to fulfill a requirement

for being on the list?

Chris

--- Peggy wrote:

> Yes My Tx Dr said if and when I get a new

> lung I would probably be on

> low dose prednisone for a while, But there are a lot

> of anti-rejection

> drugs. I don't know much about that yet. His Tx DR.

> will tell him all about

> it. God Bless you both I'll be praying for you.

> God's Will Be Done. Peggy

>

>

> on 3/22/06 8:43 PM, at cmjonesohio@...

> wrote:

>

> After reading all of the posts about the horrors

> of prednison, my

> husband had decided he wanted nothing to do with it.

> His pulmonary

> Dr., however, says that when the transplant team has

> him come up to

> Cleveland in a few weeks to see if he qualifies,

> they will probably

> expect him to complete a trial series of medication

> before being

> listed. Dr. Graham thinks it will probably be

> prednisone and something

> else. Those of you that have already had

> appointments with tx Drs., is

> this typical? We were really hoping to avoid the

> prednisone, but if

> that's what they want, Hubby is willing to do

> anything for the

> transplant.

> Chris

>

>

>

>

>

>

[Guest guest]

Barb,

I just got a call from the hospital a couple of days ago telling me that I probably would not be approved. I have Lupus, high blood pressure, blood clotting disorder, thyroid disorder, previous stroke, seizures and myriad of other results of years of battling Lupus. They are getting more reports from my rheumatologist right now. So, we will see.

All we can do it keep on struggling to stay as well as possible. I believe in a day at a time. Some days a breath at a time.

Where will you go for your evaluation? I live near Louisville and they want me to go to St. Louis.

Prayers and Hugs,

Joyce> > > Prednisone is not a horrible drug...it has helped to> > keep many people with different diseases alive....I> > think what has been discussed here is that> > prednisone does not seem to have any benefits for> > people with PF. This makes sense, since it is used> > as an anti inflammatory medication....if there is no> > inflammation in the lungs, there is no point in> > using it. It does have side effects, but all drugs> > do. > > Also, in the past few years, doctors are learning> > that there are more side effects with prednisone> > that they didn't know about. But, I think that is> > true of many drugs...if it's used a lot, more is> > learned about it...some good...some not!> > The best thing to do is to talk with your> > physician....everyone is different...I'd hate to> > think that anyone would refuse a medication without> > knowing all the benefits and side effects. > > If you are considering transplant, their protocol is> > very strict...predisone is probably used in many of> > them...but transplant patients need to take many> > medications every day. > > --> > Diane Quinlan > > dianequinlan@... > > > __________________________________________________>

[Guest guest]

Barb my tx dr said not to worry about the meds that I react to. there are many drugs they can use. Peggy

on 3/24/06 2:48 AM, Barbara Soice at babs594@... wrote:

I am a diabetic as well as having IPF I hope sometime in the near future I will be considered for a transplant. Problem is that Prednisone makes my blood sugar soar sky high. What do I do about that? Will they reject me because I can't take prednisone because of my diabetes? Anyone know?

Barb

wrote:

Diane,

I'm so sorry, I didn't mean to come off sounding

like prednisone is useless. My grandmother used it

for years before she passed, and even with the side

effects I believe it gave her a much better quality of

life than she would have had without it. I just meant

in reference to IPF for the reasons you just

mentioned. I also should have been clearer that we

didn't just decide against it based on these posts,

but after discussing it with the Dr. as well. I'm

afraid I tend to forget that when conversing by typing

rather than talking I must be more careful in how I

phrase things. I in NO way meant to offend anyone.

My apologies, and thanks for responding.

Chris

--- dianequinlan@... wrote:

> Prednisone is not a horrible drug...it has helped to

> keep many people with different diseases alive....I

> think what has been discussed here is that

> prednisone does not seem to have any benefits for

> people with PF. This makes sense, since it is used

> as an anti inflammatory medication....if there is no

> inflammation in the lungs, there is no point in

> using it. It does have side effects, but all drugs

> do.

> Also, in the past few years, doctors are learning

> that there are more side effects with prednisone

> that they didn't know about. But, I think that is

> true of many drugs...if it's used a lot, more is

> learned about it...some good...some not!

> The best thing to do is to talk with your

> physician....everyone is different...I'd hate to

> think that anyone would refuse a medication without

> knowing all the benefits and side effects.

> If you are considering transplant, their protocol is

> very strict...predisone is probably used in many of

> them...but transplant patients need to take many

> medications every day.

> --

> Diane Quinlan

> dianequinlan@...

__________________________________________________

[Guest guest]

Barb,

My hubby is diabetic too. No one told us anything

about it affecting his blood sugar...hmmm...I guess we

better ask his doctor about that too. Thanks for the

info.

Chris

--- Barbara Soice wrote:

> I am a diabetic as well as having IPF I hope

> sometime in the near future I will be considered for

> a transplant. Problem is that Prednisone makes my

> blood sugar soar sky high. What do I do about that?

> Will they reject me because I can't take prednisone

> because of my diabetes? Anyone know?

>

> Barb

>

> wrote:

> Diane,

> I'm so sorry, I didn't mean to come off sounding

> like prednisone is useless. My grandmother used it

> for years before she passed, and even with the side

> effects I believe it gave her a much better quality

> of

> life than she would have had without it. I just

> meant

> in reference to IPF for the reasons you just

> mentioned. I also should have been clearer that we

> didn't just decide against it based on these posts,

> but after discussing it with the Dr. as well. I'm

> afraid I tend to forget that when conversing by

> typing

> rather than talking I must be more careful in how I

> phrase things. I in NO way meant to offend anyone.

> My apologies, and thanks for responding.

> Chris

>

> --- dianequinlan@... wrote:

>

> > Prednisone is not a horrible drug...it has helped

> to

> > keep many people with different diseases

> alive....I

> > think what has been discussed here is that

> > prednisone does not seem to have any benefits for

> > people with PF. This makes sense, since it is

> used

> > as an anti inflammatory medication....if there is

> no

> > inflammation in the lungs, there is no point in

> > using it. It does have side effects, but all

> drugs

> > do.

> > Also, in the past few years, doctors are learning

> > that there are more side effects with prednisone

> > that they didn't know about. But, I think that is

> > true of many drugs...if it's used a lot, more is

> > learned about it...some good...some not!

> > The best thing to do is to talk with your

> > physician....everyone is different...I'd hate to

> > think that anyone would refuse a medication

> without

> > knowing all the benefits and side effects.

> > If you are considering transplant, their protocol

> is

> > very strict...predisone is probably used in many

> of

> > them...but transplant patients need to take many

> > medications every day.

> > --

> > Diane Quinlan

> > dianequinlan@...

>

>

> __________________________________________________

>

[Guest guest]

I too am a diabetic. This is the main reason my Drs., especially my primary care doc, don't want to put me on prednisone.

Gordon

I am what is diagnosed as a "brittle" diabetic. And my Dr.'s (3), Primary, Pulmonary, and Rheumatologist, after consulting never hesitated to put me on prednisone. So strange...so many different medical techniques and procedures.

kiss kiss,

~Ginger~

[Guest guest]

What is a "brittle" diabetic? I understood you were either type 1 or type 2. Perhaps they believed the affect on your sugar levels would be insignificant compared to the benefits of prednisone. Please remember most forms of interstitial lung diseases can be stopped from further progression by the use of steroids, especially prednisone.

It was explained to me that a brittle diabetic has blood levels that go way high and then the botto drops out. My sugars have been 400 and then drop to 57. Yes, I agree regarding the progress of th fibrosis stopping or slowing down...I believe that is the reason they were so agreeable to the prednisone.

kiss kiss

~Ginger~

[Guest guest]

I too am a diabetic. This is the main reason my Drs., especially my primary care doc, don't want to put me on prednisone.

Gordon

Re: Prednisone and transplant

Barb, My hubby is diabetic too. No one told us anythingabout it affecting his blood sugar...hmmm...I guess webetter ask his doctor about that too. Thanks for theinfo.Chris--- Barbara Soice wrote:> I am a diabetic as well as having IPF I hope> sometime in the near future I will be considered for> a transplant. Problem is that Prednisone makes my> blood sugar soar sky high. What do I do about that?> Will they reject me because I can't take prednisone> because of my diabetes? Anyone know?> > Barb> > wrote:> Diane,> I'm so sorry, I didn't mean to come off sounding> like prednisone is useless. My grandmother used it> for years before she passed, and even with the side> effects I believe it gave her a much better quality> of> life than she would have had without it. I just> meant> in reference to IPF for the reasons you just> mentioned. I also should have been clearer that we> didn't just decide against it based on these posts,> but after discussing it with the Dr. as well. I'm> afraid I tend to forget that when conversing by> typing> rather than talking I must be more careful in how I> phrase things. I in NO way meant to offend anyone. > My apologies, and thanks for responding.> Chris> > --- dianequinlan@... wrote:> > > Prednisone is not a horrible drug...it has helped> to> > keep many people with different diseases> alive....I> > think what has been discussed here is that> > prednisone does not seem to have any benefits for> > people with PF. This makes sense, since it is> used> > as an anti inflammatory medication....if there is> no> > inflammation in the lungs, there is no point in> > using it. It does have side effects, but all> drugs> > do. > > Also, in the past few years, doctors are learning> > that there are more side effects with prednisone> > that they didn't know about. But, I think that is> > true of many drugs...if it's used a lot, more is> > learned about it...some good...some not!> > The best thing to do is to talk with your> > physician....everyone is different...I'd hate to> > think that anyone would refuse a medication> without> > knowing all the benefits and side effects. > > If you are considering transplant, their protocol> is> > very strict...predisone is probably used in many> of> > them...but transplant patients need to take many> > medications every day. > > --> > Diane Quinlan > > dianequinlan@... > > > __________________________________________________>

[Guest guest]

Joyce, I feel so bad for you. I will keep you in my prayers. I hope the hospital decideds to give you a try. I will be evaluated at the Jewish hospital in Louisville. \ Barbjanne5303 wrote: Barb, I just got a call from the hospital a couple of days ago telling me that I probably would not be approved. I have Lupus, high blood pressure, blood clotting disorder, thyroid disorder, previous stroke, seizures and myriad of other results of years of battling Lupus. They are getting more reports from my rheumatologist right now. So, we will see. All we can do it keep on

struggling to stay as well as possible. I believe in a day at a time. Some days a breath at a time. Where will you go for your evaluation? I live near Louisville and they want me to go to St. Louis. Prayers and Hugs, Joyce> > > Prednisone is not a horrible drug...it has helped to> > keep many people with different diseases alive....I> > think what has been discussed here is that> > prednisone does not seem to have any

benefits for> > people with PF. This makes sense, since it is used> > as an anti inflammatory medication....if there is no> > inflammation in the lungs, there is no point in> > using it. It does have side effects, but all drugs> > do. > > Also, in the past few years, doctors are learning> > that there are more side effects with prednisone> > that they didn't know about. But, I think that is> > true of many drugs...if it's used a lot, more is> > learned about it...some good...some not!> > The best thing to do is to talk with your> > physician....everyone is different...I'd hate to> > think that anyone would refuse a medication without> > knowing all the benefits and side effects. > > If you are considering transplant, their protocol is> > very strict...predisone is probably used in many of> > them...but transplant

patients need to take many> > medications every day. > > --> > Diane Quinlan > > dianequinlan@... > > > __________________________________________________>

[Guest guest]

What is a "brittle" diabetic? I understood you were either type 1 or type 2. Perhaps they believed the affect on your sugar levels would be insignificant compared to the benefits of prednisone. Please remember most forms of interstitial lung diseases can be stopped from further progression by the use of steroids, especially prednisone.

Re: Prednisone and transplant

I too am a diabetic. This is the main reason my Drs., especially my primary care doc, don't want to put me on prednisone.

Gordon

I am what is diagnosed as a "brittle" diabetic. And my Dr.'s (3), Primary, Pulmonary, and Rheumatologist, after consulting never hesitated to put me on prednisone. So strange...so many different medical techniques and procedures.

kiss kiss,

~Ginger~

[Guest guest]

I've seen 3 Pulmonogist since my dx in January. The first one wanted

to put me on " conventional treatment " (for which there is no evidence

of effectiveness). The 2nd doc said no prenidsone needed, no

effective because IPF is no an inflammaatory disease. The 3rd doc, a

published reresearcher in IPF, also said no prenidsone. Had I been on

them, he was going to help me get off. IPF is a disease of abnormal

healing, not an inflammatory process, as original thougt, thus

prednisone is not an appropirate drug.

I-- In Breathe-Support , " "

wrote:

>

> After reading all of the posts about the horrors of prednison, my

> husband had decided he wanted nothing to do with it. His pulmonary

> Dr., however, says that when the transplant team has him come up to

> Cleveland in a few weeks to see if he qualifies, they will probably

> expect him to complete a trial series of medication before being

> listed. Dr. Graham thinks it will probably be prednisone and

something

> else. Those of you that have already had appointments with tx Drs.,

is

> this typical? We were really hoping to avoid the prednisone, but if

> that's what they want, Hubby is willing to do anything for the

> transplant.

> Chris

>

[Guest guest]

Bonnie I did some investigation and the only FREE clinical trial is in Michigan. Darn. BarbBonnie Faulkner wrote: I've seen 3 Pulmonogist since my dx in January. The first one wanted to put me on "conventional treatment"(for which there is no evidence of effectiveness). The 2nd doc said no prenidsone needed, no effective because IPF is no an inflammaatory disease. The 3rd doc, a published reresearcher in IPF, also said no prenidsone. Had I been on them, he was going to help me get off. IPF is a disease of abnormal healing, not an inflammatory process, as original thougt, thus prednisone is not an appropirate drug.I-- In Breathe-Support , "Chris"

wrote:>> After reading all of the posts about the horrors of prednison, my > husband had decided he wanted nothing to do with it. His pulmonary > Dr., however, says that when the transplant team has him come up to > Cleveland in a few weeks to see if he qualifies, they will probably > expect him to complete a trial series of medication before being > listed. Dr. Graham thinks it will probably be prednisone and something > else. Those of you that have already had appointments with tx Drs., is > this typical? We were really hoping to avoid the prednisone, but if > that's what they want, Hubby is willing to do anything for the > transplant. > Chris>

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