Iloprost infusion: Does anyone have... - Scleroderma & Ray...

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Iloprost infusion

UCTD profile image
UCTD
8 Replies

Does anyone have elective Iloprost infusions annually? I had one last December and it worked really well. I am wondering if I should ask for one before the weather starts getting really cold.

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UCTD profile image
UCTD
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8 Replies
positivedaybyday profile image
positivedaybyday

I have one annually. My Rheumatologist arranges this for me. Speak to your & find out when it's possible. Xx

Ciderbabe profile image
Ciderbabe

Yes. You can have it done at your pharmacy.

GlasgowHen profile image
GlasgowHen in reply toCiderbabe

Hi ciderbabe, iloprost is a hospital only treatment as is given intravenously for 3-5 days.

GlasgowHen profile image
GlasgowHen

I have it regularly year round and it makes a huge difference. I would definitely ask

UCTD profile image
UCTD

Thanks for your advice 😃

Im in hospital at the moment having my 6 monthly infusion. I have it now in prep for the winter and 6 month s later as it wears off. I m into my 5th year, funny thing is each infusion affects me differently. Yesterday I sailed through it but today could be a rough one. Its worth it for me though. My Rheumatologist organises it for me. All the best.

fairy56 profile image
fairy56

Hi UCTD, I have Iloprost infusions twice a year, 3 days of treatment each time, normally in September and again in March, unless my consultant thinks I need it sooner than March. I would advise you to request it now before the cold weather really takes hold. Take care xx

Yes, I have a 6 hour x 5 days infusion treatment twice a year....this is organised through my rheumie. it does give a relief to some degree but is unfortunately short lived. I also take Sildenafil (Viagra) in cold weather.

You need to ask your rheumie about another iloprost infusion.

Best wishes x x

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