should i be concerned?

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Redneck2009

New member
I was just moved to the adult clinic here in st.louis and while the adult doctors i moved to idid research on and they are very intelligent and involved in research... im wondering if i should be concerned with how they want to do things with me... again it was my first visit there but it seems they are taking me off more drugs that got me this far in life.... than putting me on!!!!!

I was taking off ibuprofen which he claims is a drug that works at decreasing the inflammation in younger kids, and next visit they are checking my pseudomonus levels and are most likely going to take me off of itraconazole....
Prior to me moving there i got to meet him and his other charge doctor and they both talked about putting me on hypertonic saline (yes im STILL not on it because when it first came out i was one of the few that actually got worse immediately after taking it, however these two new doctors both said when i first met them that the benefits GREATLY outweighed the slight drop in pfts that i had after taking it and that after continued use that drop would go away.... so neededless to say, come this visit i asked them about starting it and they pretty much just told me we are going to start it right now... WTF!!!! and i asked about cayston and they said well you seem to do fine with tobi that cayston and tobi work about the same some ppl just react better with cayston and some with tobi so theres no reason to start you with cayston and that because of the shortage new pts cannot be put on cayston right now anyway which i suppose is fine....
but like i said, should i be concerned? they are removing more drugs than they are adding, should i be concerned? i mean in all honestly i loved my cf doctor on the peds side and i wish i didnt have to leave... and the way i see it, i got to the age of 21 because of him... now these new guys are dropping the same drugs that got me to where i am now without adding anything? it just doesnt add up and was wondering if i should be concered or since it was just my first visit just give it time and let them get to know me and MY cf in particular and trust their judgements?
 
R

Redneck2009

New member
I was just moved to the adult clinic here in st.louis and while the adult doctors i moved to idid research on and they are very intelligent and involved in research... im wondering if i should be concerned with how they want to do things with me... again it was my first visit there but it seems they are taking me off more drugs that got me this far in life.... than putting me on!!!!!

I was taking off ibuprofen which he claims is a drug that works at decreasing the inflammation in younger kids, and next visit they are checking my pseudomonus levels and are most likely going to take me off of itraconazole....
Prior to me moving there i got to meet him and his other charge doctor and they both talked about putting me on hypertonic saline (yes im STILL not on it because when it first came out i was one of the few that actually got worse immediately after taking it, however these two new doctors both said when i first met them that the benefits GREATLY outweighed the slight drop in pfts that i had after taking it and that after continued use that drop would go away.... so neededless to say, come this visit i asked them about starting it and they pretty much just told me we are going to start it right now... WTF!!!! and i asked about cayston and they said well you seem to do fine with tobi that cayston and tobi work about the same some ppl just react better with cayston and some with tobi so theres no reason to start you with cayston and that because of the shortage new pts cannot be put on cayston right now anyway which i suppose is fine....
but like i said, should i be concerned? they are removing more drugs than they are adding, should i be concerned? i mean in all honestly i loved my cf doctor on the peds side and i wish i didnt have to leave... and the way i see it, i got to the age of 21 because of him... now these new guys are dropping the same drugs that got me to where i am now without adding anything? it just doesnt add up and was wondering if i should be concered or since it was just my first visit just give it time and let them get to know me and MY cf in particular and trust their judgements?
 
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Incomudrox

New member
Taking you off ibuprofen is a good idea, personally I think. It will slowly eat away the lining of your stomach over time and cause a number of things to happen - all none of which are any good. If you want something that is anti-inflammatory there are many other options that can be Rx'd or that are OTC "natural" such as DHA (Fish oil derivative which the CFF is studying.) as well as Viagra (which the CFF is studying see Sildenafil).

I'm not sure what you mean by "Pseudomonas levels".... in any even Itraconazole has nothing to do with pseudomonas it is used to treat fungal infections like ABPA.

Hypertonic saline - will make you feel like garbage at first but you need to give it time to work. It is MUCH better tolerated in a Sidestream nebulizer than all others. The reason you most likely felt it was not working is because well it WAS working. Moving things out which will make you feel worse at first and possibly for a few days. Which would also explain a drop in PFTs if the stuff moving out is blocking airways.

Cyston - should be reserved for as long as possible. The more different number of abx you use to fight a bacterial infection the more chance you have that the bacteria develops resistance.
 
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Incomudrox

New member
Taking you off ibuprofen is a good idea, personally I think. It will slowly eat away the lining of your stomach over time and cause a number of things to happen - all none of which are any good. If you want something that is anti-inflammatory there are many other options that can be Rx'd or that are OTC "natural" such as DHA (Fish oil derivative which the CFF is studying.) as well as Viagra (which the CFF is studying see Sildenafil).

I'm not sure what you mean by "Pseudomonas levels".... in any even Itraconazole has nothing to do with pseudomonas it is used to treat fungal infections like ABPA.

Hypertonic saline - will make you feel like garbage at first but you need to give it time to work. It is MUCH better tolerated in a Sidestream nebulizer than all others. The reason you most likely felt it was not working is because well it WAS working. Moving things out which will make you feel worse at first and possibly for a few days. Which would also explain a drop in PFTs if the stuff moving out is blocking airways.

Cyston - should be reserved for as long as possible. The more different number of abx you use to fight a bacterial infection the more chance you have that the bacteria develops resistance.
 
H

Havoc

New member
I agree with Incomudrox, everything the docs are doing is appropriate. The only thing I would add is HTS can sometimes cause bronchospasm. Doing albuterol or Atrovent before might help out with that.
 
H

Havoc

New member
I agree with Incomudrox, everything the docs are doing is appropriate. The only thing I would add is HTS can sometimes cause bronchospasm. Doing albuterol or Atrovent before might help out with that.
 
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blundergirl

New member
It can be tough to switch medical teams! Have you told your doctor about your concerns? Maybe they can explain rationales for medication changes to you a little better. My husband loves his new team at Barnes and we have been thrilled with the overall results from the changes that were made. Good luck to you!
 
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blundergirl

New member
It can be tough to switch medical teams! Have you told your doctor about your concerns? Maybe they can explain rationales for medication changes to you a little better. My husband loves his new team at Barnes and we have been thrilled with the overall results from the changes that were made. Good luck to you!
 
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Redneck2009

New member
Blundergirl, does he have rosenbluth and adkinson? and yes i know taking me off ibuprofen was good, however youd think he give me something else... and yes ive been battling for hypertonic saline trust me, ive heard great things about it. and to make it more clear incomudrox, my pediatric CF doctor is the one that wouldnt let me take it. it was at a scheudled clinic visit he said theres a new treatment that we are going to try, i did pfts before and pfts after and my pfts after were lower so he said (at that time) that hypertonic was not for me. NOW i hear that that that drop in pfts is nothing compared to the benefits, so like i said it wasnt my choice not to be on it. and thats what i meant with itraconazole, i was thinking abpa but said pseudo my apologies. I guess so far the consensus is to give it time so ill give them time.
 
R

Redneck2009

New member
Blundergirl, does he have rosenbluth and adkinson? and yes i know taking me off ibuprofen was good, however youd think he give me something else... and yes ive been battling for hypertonic saline trust me, ive heard great things about it. and to make it more clear incomudrox, my pediatric CF doctor is the one that wouldnt let me take it. it was at a scheudled clinic visit he said theres a new treatment that we are going to try, i did pfts before and pfts after and my pfts after were lower so he said (at that time) that hypertonic was not for me. NOW i hear that that that drop in pfts is nothing compared to the benefits, so like i said it wasnt my choice not to be on it. and thats what i meant with itraconazole, i was thinking abpa but said pseudo my apologies. I guess so far the consensus is to give it time so ill give them time.
 
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Havoc

New member
Probably the only really good alternative for an anti-inflammatory agent is an inhaled steroid (Advair, Qvar, etc.).

The benefits of HTS do not always outweigh the untoward side effects. I am an example of that. I have very good pulmonary function and had been running at the high school track with my partner at work. We would typically run about 4 miles. Upon starting HTS, which was presented to me as the best thing since sliced bread, I was only able to run 1/2 mile and had to stop because I simply couldn't breathe. I had to go back to station and do an albuterol neb. So for me there was no benefit, only bronchospasm. It sounds like you might have a similar reaction, but I agree that you should be allowed to try it.

Itraconazole for ABPA is not always necessary. Some docs prescribe it and some don't. It hasn't been demonstrated (to my knowledge) that aspergillus actually infects the cells 100% of the time. Rather, ABPA is an allergic reaction that comes from the epithelial cells of the lung tissue coming into contact with the aspergillus growing in the mucus of your lung. Given that antifungals are particularly hard on your liver, treatment with them is often withheld since there might not be any benefit anyway. It's really dependent on the preference of the doc. Is your IgE level back down to normal limits?
 
H

Havoc

New member
Probably the only really good alternative for an anti-inflammatory agent is an inhaled steroid (Advair, Qvar, etc.).

The benefits of HTS do not always outweigh the untoward side effects. I am an example of that. I have very good pulmonary function and had been running at the high school track with my partner at work. We would typically run about 4 miles. Upon starting HTS, which was presented to me as the best thing since sliced bread, I was only able to run 1/2 mile and had to stop because I simply couldn't breathe. I had to go back to station and do an albuterol neb. So for me there was no benefit, only bronchospasm. It sounds like you might have a similar reaction, but I agree that you should be allowed to try it.

Itraconazole for ABPA is not always necessary. Some docs prescribe it and some don't. It hasn't been demonstrated (to my knowledge) that aspergillus actually infects the cells 100% of the time. Rather, ABPA is an allergic reaction that comes from the epithelial cells of the lung tissue coming into contact with the aspergillus growing in the mucus of your lung. Given that antifungals are particularly hard on your liver, treatment with them is often withheld since there might not be any benefit anyway. It's really dependent on the preference of the doc. Is your IgE level back down to normal limits?
 
C

CrisDopher

New member
When I switched doctors a few years ago, my one rule was this: we make ONE change at a time to my long-term regimen. If you make more than one, how do you know which change made you feel worse or better?

FWIW, I agree ibuprofen will destroy you - my mom has 50% renal function because of overusing ibuprofen for 40 years. And I, too, perceive intraconazole as an antifungal, not anti-PA. HS may help, certainly, with the "gotchas" noted above. I do it. Had to back off to 3% lately, though I did 7% for years. Will try 7% again at a later time.
 
C

CrisDopher

New member
When I switched doctors a few years ago, my one rule was this: we make ONE change at a time to my long-term regimen. If you make more than one, how do you know which change made you feel worse or better?

FWIW, I agree ibuprofen will destroy you - my mom has 50% renal function because of overusing ibuprofen for 40 years. And I, too, perceive intraconazole as an antifungal, not anti-PA. HS may help, certainly, with the "gotchas" noted above. I do it. Had to back off to 3% lately, though I did 7% for years. Will try 7% again at a later time.
 
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