I am soon to start inhaled Pentamidine instead... - CLL Support

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I am soon to start inhaled Pentamidine instead of Atovaquone to prevent PCP - has anyone suffered any side affects from this?

Kingfisher20 profile image
6 Replies

I've taken Atovaquone, to prevent PCP, throughout my chemo and the last 7months post chemo. At my last Clinic appointment the Consultant decided that when I finish my present prescription of Atovaquone, I will commence inhaled Pentamidine once every 4 weeks instead of the Atovaquone . I'm wondering if others have had any issues with the Pentamidine.

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Kingfisher20
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Kingfisher20 profile image
Kingfisher20

Thanks Jan, that is encouraging to hear. As usual, reading the list of possible side effects on the medication list, is somewhat lengthy! So good to hear that your reaction to it was minimal.

RobertCLL profile image
RobertCLL

CLLPLODDER. I was on Pentamidine for about 12 months whilst on RFC. Whilst going to hospital was inconvenient every month I suffered from no side effects from the procedure.

Mandy56 profile image
Mandy56

Hi

I finished FCR last November and during the chemo I had pentamidine each month.

Unfortunately after three months I couldn’t tolerate it any more. I think I had more of a reaction from the first dose than the other two responders, who seemed fine. By dose three my throat was very sore, I felt sick and saliva was running out of my mouth onto the floor. Not a pretty sight!

Hopefully you’ll be fine and no side effects. Good luck.

Kingfisher20 profile image
Kingfisher20 in reply toMandy56

Thank you for your response. Sorry to hear you had a rough time with it. I hope you are making good progress now.

NooNoo14 profile image
NooNoo14

I had my fourth Pentamidine nebuliser last Friday. I did have slight light headedness after the first one which didn't last long but fine after the rest. The taste it leaves is not the best and my throat is a little sore but a fruit sweet to suck and water for afterwards soon settles it. As Robert says, the inconvenience of having to attend hospital every week in addition to all the other appointments we have is probably the worst side effect.

Netty

Kingfisher20 profile image
Kingfisher20

Thank you for your response, it’s helpful to know how others have found the treatment.

Having to attend the appointments won’t be a hassle as I work in the same hospital! (Perhaps not the best perk of being back at work - but at least I won’t have to make a separate journey for the treatment).

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