Question about pentamidine prophylaxis for PCP

[Wendy Beltrami]

Hello all,

Can those of you who have had pentamidine breathing treatments as prophylaxis for PCP give me the details of your treatment?

For example:

Was it done on an out patient basis in the hospital?
In a doctor's office/clinic?

Were you premedicated?

Side effects?

Assuming your treatment prescription was for a 15 minute treatment, did you have to stay afterwards for monitoring, etc.? Were you in and out within 30 min or so?

Did a nurse/doctor/respiratory therapist remain with you during the treatment?

Thanks,
Wendy/mom to Grant
dx 12/4/98 AA

[Ruth Cuadra]

Wendy,

Following my transplant at City of Hope in 1998, I had serveral months of prophylactic pentamidine treatments.

It was done in the pulmonary clinic on an outpatient basis. I sat alone in a little examining room. A respiratory therapist would add the prescribed pentamidine to an inhaler device, which I held in mouth and breathed in and out until all of the medicine had been vaporized.

It usually took about 20 minutes but would leave me very wheezy for a least a day and sometimes two afterwards. Finally, I learned there was a premed called Albulterol that could be taken (same method with the inhaler) before the pentatamidine. This made the process take a little longer, maybe 30 minutes total, but removed the problem of post-treatment wheezing.

These treatments were mostly boring and the medicine has a rather bad (but not unbearable or naseating) taste. There was no monitoring afterwards. The therapist would check back periodically to see if I'd finished the treatment and as soon as I was done, I left.

Let me know if you have any other questions. My memory of these details is rather hazy but I could dig out my notes if you need some more help.

Regards,
Ruth

[skoopman]

Wendy,
While in CA Michelle was getting pentamadine via IV. When we went to WI they informed us the IV is hard on the kidneys so they switched to inhaled. It was done in the outpatient clinic once a month with a respitory therapist in the room. There were no pre-meds but they had Michelle suck on a jolly ranchers candy to disguise the taste. I want to think it lasted about 10 minutes or so. She only had two treatments before she was put on bactrim.
Suzanne
mom to Michelle, age 6, SAA 6-1-05, BMT 11-11-05