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Desensitization?

ladybug

New member
Hello,

MY CF clinic told me recently they are running out of meds to treat me (I.V.) since I'm allergic to so many things that I'm still sensitive to.

I remember a few years back at another center, my nurse mentioned "desensitizing" (I think that's what it was called, but there is probably a more technical term) to meds wherein they basically give you a sedative and slowly administer the drug you're allergic to into your blood so its introduced in a way your antibodies won't attack it. Has anyone ever heard of this or done this? Do you have any information on it? I guess I'm just curious if this is even an option.

If I'm resistant to everything I'm NOT allergic to and we're out of options, I think this is my last resort before trying synergy testing, etc. of meds I"m resistant to, but I think I'd rather become "un-allergic" to meds that actually work first!

Thanks for any info!
 

ladybug

New member
Hello,

MY CF clinic told me recently they are running out of meds to treat me (I.V.) since I'm allergic to so many things that I'm still sensitive to.

I remember a few years back at another center, my nurse mentioned "desensitizing" (I think that's what it was called, but there is probably a more technical term) to meds wherein they basically give you a sedative and slowly administer the drug you're allergic to into your blood so its introduced in a way your antibodies won't attack it. Has anyone ever heard of this or done this? Do you have any information on it? I guess I'm just curious if this is even an option.

If I'm resistant to everything I'm NOT allergic to and we're out of options, I think this is my last resort before trying synergy testing, etc. of meds I"m resistant to, but I think I'd rather become "un-allergic" to meds that actually work first!

Thanks for any info!
 

ladybug

New member
Hello,

MY CF clinic told me recently they are running out of meds to treat me (I.V.) since I'm allergic to so many things that I'm still sensitive to.

I remember a few years back at another center, my nurse mentioned "desensitizing" (I think that's what it was called, but there is probably a more technical term) to meds wherein they basically give you a sedative and slowly administer the drug you're allergic to into your blood so its introduced in a way your antibodies won't attack it. Has anyone ever heard of this or done this? Do you have any information on it? I guess I'm just curious if this is even an option.

If I'm resistant to everything I'm NOT allergic to and we're out of options, I think this is my last resort before trying synergy testing, etc. of meds I"m resistant to, but I think I'd rather become "un-allergic" to meds that actually work first!

Thanks for any info!
 

ladybug

New member
Hello,

MY CF clinic told me recently they are running out of meds to treat me (I.V.) since I'm allergic to so many things that I'm still sensitive to.

I remember a few years back at another center, my nurse mentioned "desensitizing" (I think that's what it was called, but there is probably a more technical term) to meds wherein they basically give you a sedative and slowly administer the drug you're allergic to into your blood so its introduced in a way your antibodies won't attack it. Has anyone ever heard of this or done this? Do you have any information on it? I guess I'm just curious if this is even an option.

If I'm resistant to everything I'm NOT allergic to and we're out of options, I think this is my last resort before trying synergy testing, etc. of meds I"m resistant to, but I think I'd rather become "un-allergic" to meds that actually work first!

Thanks for any info!
 

ladybug

New member
Hello,
<br />
<br />MY CF clinic told me recently they are running out of meds to treat me (I.V.) since I'm allergic to so many things that I'm still sensitive to.
<br />
<br />I remember a few years back at another center, my nurse mentioned "desensitizing" (I think that's what it was called, but there is probably a more technical term) to meds wherein they basically give you a sedative and slowly administer the drug you're allergic to into your blood so its introduced in a way your antibodies won't attack it. Has anyone ever heard of this or done this? Do you have any information on it? I guess I'm just curious if this is even an option.
<br />
<br />If I'm resistant to everything I'm NOT allergic to and we're out of options, I think this is my last resort before trying synergy testing, etc. of meds I"m resistant to, but I think I'd rather become "un-allergic" to meds that actually work first!
<br />
<br />Thanks for any info!
 

serendipity730

New member
Hi Sonia,

I recently did a desensitization to Zosyn (which wasn't successful, but that's a whole other story). At the hospital I go to, all desensitizations take place in the ICU, so I spent a night there. Then, every 15 mins, I was given slightly increasing amounts of Zosyn until I was getting the regular dose. As you said, because of the way the drug is introduced, your immune system doesn't react in the way it has to the drug in the past. Two caveats to desensitization are these: you will need it every time you are on the drug and if you miss a done are don't take a dose within the prescribed time frame, you need to be re-desensitized.

I hope this help. I am in a similar situation, being resistant to everything. My synergy testing wasn't helpful - I am only sensitve to Colistin.

Good luck!
 

serendipity730

New member
Hi Sonia,

I recently did a desensitization to Zosyn (which wasn't successful, but that's a whole other story). At the hospital I go to, all desensitizations take place in the ICU, so I spent a night there. Then, every 15 mins, I was given slightly increasing amounts of Zosyn until I was getting the regular dose. As you said, because of the way the drug is introduced, your immune system doesn't react in the way it has to the drug in the past. Two caveats to desensitization are these: you will need it every time you are on the drug and if you miss a done are don't take a dose within the prescribed time frame, you need to be re-desensitized.

I hope this help. I am in a similar situation, being resistant to everything. My synergy testing wasn't helpful - I am only sensitve to Colistin.

Good luck!
 

serendipity730

New member
Hi Sonia,

I recently did a desensitization to Zosyn (which wasn't successful, but that's a whole other story). At the hospital I go to, all desensitizations take place in the ICU, so I spent a night there. Then, every 15 mins, I was given slightly increasing amounts of Zosyn until I was getting the regular dose. As you said, because of the way the drug is introduced, your immune system doesn't react in the way it has to the drug in the past. Two caveats to desensitization are these: you will need it every time you are on the drug and if you miss a done are don't take a dose within the prescribed time frame, you need to be re-desensitized.

I hope this help. I am in a similar situation, being resistant to everything. My synergy testing wasn't helpful - I am only sensitve to Colistin.

Good luck!
 

serendipity730

New member
Hi Sonia,

I recently did a desensitization to Zosyn (which wasn't successful, but that's a whole other story). At the hospital I go to, all desensitizations take place in the ICU, so I spent a night there. Then, every 15 mins, I was given slightly increasing amounts of Zosyn until I was getting the regular dose. As you said, because of the way the drug is introduced, your immune system doesn't react in the way it has to the drug in the past. Two caveats to desensitization are these: you will need it every time you are on the drug and if you miss a done are don't take a dose within the prescribed time frame, you need to be re-desensitized.

I hope this help. I am in a similar situation, being resistant to everything. My synergy testing wasn't helpful - I am only sensitve to Colistin.

Good luck!
 

serendipity730

New member
Hi Sonia,
<br />
<br />I recently did a desensitization to Zosyn (which wasn't successful, but that's a whole other story). At the hospital I go to, all desensitizations take place in the ICU, so I spent a night there. Then, every 15 mins, I was given slightly increasing amounts of Zosyn until I was getting the regular dose. As you said, because of the way the drug is introduced, your immune system doesn't react in the way it has to the drug in the past. Two caveats to desensitization are these: you will need it every time you are on the drug and if you miss a done are don't take a dose within the prescribed time frame, you need to be re-desensitized.
<br />
<br />I hope this help. I am in a similar situation, being resistant to everything. My synergy testing wasn't helpful - I am only sensitve to Colistin.
<br />
<br />Good luck!
 

JazzysMom

New member
We have a few members who are in your boat. Either resistant to or allergic.

For those allergic they get "desensitized" by going to ICU & monitored while courses of the med in question get administered. They adjust things as needed & if things go well they continue on.

Being in ICU I believe is standard practice given some of the reactions can be quite severe....

Those I, personally, know that have done it....it has worked for them.
 

JazzysMom

New member
We have a few members who are in your boat. Either resistant to or allergic.

For those allergic they get "desensitized" by going to ICU & monitored while courses of the med in question get administered. They adjust things as needed & if things go well they continue on.

Being in ICU I believe is standard practice given some of the reactions can be quite severe....

Those I, personally, know that have done it....it has worked for them.
 

JazzysMom

New member
We have a few members who are in your boat. Either resistant to or allergic.

For those allergic they get "desensitized" by going to ICU & monitored while courses of the med in question get administered. They adjust things as needed & if things go well they continue on.

Being in ICU I believe is standard practice given some of the reactions can be quite severe....

Those I, personally, know that have done it....it has worked for them.
 

JazzysMom

New member
We have a few members who are in your boat. Either resistant to or allergic.

For those allergic they get "desensitized" by going to ICU & monitored while courses of the med in question get administered. They adjust things as needed & if things go well they continue on.

Being in ICU I believe is standard practice given some of the reactions can be quite severe....

Those I, personally, know that have done it....it has worked for them.
 

JazzysMom

New member
We have a few members who are in your boat. Either resistant to or allergic.
<br />
<br />For those allergic they get "desensitized" by going to ICU & monitored while courses of the med in question get administered. They adjust things as needed & if things go well they continue on.
<br />
<br />Being in ICU I believe is standard practice given some of the reactions can be quite severe....
<br />
<br />Those I, personally, know that have done it....it has worked for them.
 

letsrockcfem

New member
Hey Sonia I have been desensitized dozens of times..both IV and orally. Just like Mary says they start you at a very teeny dose of the medication and every 15-20 minutes they give another dose that has more of the medication in it. Sometimes there are 12-14 doses in a desensitization. The last dose should be the correct dose of what you'll get once you are desensitized.

It's very easy and care free for you..just can take 4-9 hours depending on who is doing it. You'll get your vitals every 15 minutes as well and they may have you hooked up to a heart monitor.

Message me with any questions!!
Rock CF,
Emily
 

letsrockcfem

New member
Hey Sonia I have been desensitized dozens of times..both IV and orally. Just like Mary says they start you at a very teeny dose of the medication and every 15-20 minutes they give another dose that has more of the medication in it. Sometimes there are 12-14 doses in a desensitization. The last dose should be the correct dose of what you'll get once you are desensitized.

It's very easy and care free for you..just can take 4-9 hours depending on who is doing it. You'll get your vitals every 15 minutes as well and they may have you hooked up to a heart monitor.

Message me with any questions!!
Rock CF,
Emily
 

letsrockcfem

New member
Hey Sonia I have been desensitized dozens of times..both IV and orally. Just like Mary says they start you at a very teeny dose of the medication and every 15-20 minutes they give another dose that has more of the medication in it. Sometimes there are 12-14 doses in a desensitization. The last dose should be the correct dose of what you'll get once you are desensitized.

It's very easy and care free for you..just can take 4-9 hours depending on who is doing it. You'll get your vitals every 15 minutes as well and they may have you hooked up to a heart monitor.

Message me with any questions!!
Rock CF,
Emily
 

letsrockcfem

New member
Hey Sonia I have been desensitized dozens of times..both IV and orally. Just like Mary says they start you at a very teeny dose of the medication and every 15-20 minutes they give another dose that has more of the medication in it. Sometimes there are 12-14 doses in a desensitization. The last dose should be the correct dose of what you'll get once you are desensitized.

It's very easy and care free for you..just can take 4-9 hours depending on who is doing it. You'll get your vitals every 15 minutes as well and they may have you hooked up to a heart monitor.

Message me with any questions!!
Rock CF,
Emily
 

letsrockcfem

New member
Hey Sonia I have been desensitized dozens of times..both IV and orally. Just like Mary says they start you at a very teeny dose of the medication and every 15-20 minutes they give another dose that has more of the medication in it. Sometimes there are 12-14 doses in a desensitization. The last dose should be the correct dose of what you'll get once you are desensitized.
<br />
<br />It's very easy and care free for you..just can take 4-9 hours depending on who is doing it. You'll get your vitals every 15 minutes as well and they may have you hooked up to a heart monitor.
<br />
<br />Message me with any questions!!
<br />Rock CF,
<br />Emily
 
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