Has anyone been treated with monthly shots of pentamidine by nebuliser to protect from infection while immunity is low following chemo?

[ruthpen]

I find it makes me cough and very wheezy. Also the skin on my face seems to react and turn red and blotchy. has any one had a similar reaction? What alternative medication could I be taking instead? Any suggestions?

[Cllcanada Top Poster CURE Hero]

Here are the side effects listed ...sounds like you have hives...

You should talk to your doctor...

What are the possible side effects of pentamidine (Nebupent)?

Side effects with pentamidine are not common. Serious side effects include:

an allergic reaction (shortness of breath; closing of the throat; hives; swelling of the lips, face, or tongue; rash; or fainting);

blurred vision;

chest pain or irregular heart beat;

difficulty breathing;

dizziness, confusion, fainting spells or excessive tiredness;

drastic appetite changes;

pain or irritation at the injection site;

mouth ulcers or irritations;

severe stomach pain;

bleeding or bruising;

severe headache;

chills;

increased thirst; or

seizures.

Other, less serious side effects may be more likely to occur. Talk to your doctor if you experience

taste changes;

diarrhea; or

nausea or vomiting.

[ruthpen]

No, I don't have hives! I will of course talk to my doctor and have already looked up side effects on line. I would like to hear from someone who has used pentamidine. I always like to research before I speak to the doctor so that I don't find myself landed with yet another drug that has the capacity to do more harm to me than good!

[Bisto CLLSA]

I am on monthly pentamidine. It replaced Septin (spelling may not be right) which I was taking during FCR. I have been fine with it, no side effects. much better than the drug it replaced which caused a rash and serious itching.

Good luck.

[Irene65]

I had pentamidine monthly during my treatment 5 years ago because my skin had broken out at the start of taking FC and all the other drugs with it. I had the shakes a bit when I finished the nebuliser and a bit of a headache but otherwise ok. The fact that staff are not permitted to be in the same room while you are having treatment is the hint. It's the other side of not getting a serious chest infection while having treatment. It seemed worth it to me.

[Nicebaps]

I was on it for 10 months and stopped in October. The only side effects I had was palpations and a stinking headache.

Best of luck

[ruthpen]

Thanks for the responses. That gives me a clearer picture and food for thought!