Have you ever taken Hydroxyurea/Hydrox... - Sickle Cell Society

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Have you ever taken Hydroxyurea/Hydroxycarbamide

SCSZoe profile imageSCSZoePartnerSickle Cell Society20 Voters
7
Yes, and I'm still on it
7
Yes, but I don't take it any more
3
No I have not
3
Never heard of it
9 Replies
mmjegs12 profile image
mmjegs12

It was good, I had more energy than ever,but the downside was I had pnemonia and didn't know I was sick eventually the pneumonia turned to a chest infection and I was in hospital for four week, it was the worst sickling crisis I ever had.

Wunmi profile image
Wunmi in reply to mmjegs12

Your consultant heamatologist should have put you on Pneumovax. I used to suffer severe pneumonia before i was placed on Pnuemovax (5 yearly vacine) and now anytime i have pnuemonia, its not severe and sometimes I even deal with it at home.

My consultant is currently considering me for Hydrocarbamide. Are there any nasties to consider when taking it?

peterpsak profile image
peterpsak in reply to mmjegs12

This is exactly what just happened to me but I was in for a fortnight. Been inactive for like 3 weeks now, feels horrible!

mmjegs12 profile image
mmjegs12

I never miss my pneumococal vaccine, the problem was explained that because immune system is suppressed by hydroxyurea ( also because it drug used to add chemo ) you bone marrow will be suppressed and thus causing one to pick up infection, hydroxyurea will make a patient neutropenic

Stephsteph92 profile image
Stephsteph92

I unfortunately didn't benefit from it very much and was taking it alongside a transfusion programme. After a year of trying it and still ending up in hospital with crisis decision was made for me to stop it. I'm on penicillin also as I am unable to have pneumococcal/pneumovax as I had an allergic reaction to it as a child.

mmjegs12 profile image
mmjegs12 in reply to Stephsteph92

Sometimes it doesn't work for everyone, also it's depends on your fetal heamoglobin. On the other hand i have been told it could be the nature of your Sickle cell Within your DNA.

Amazing59 profile image
Amazing59

I have been on Hydroxy for Four years now, and still get chest infections and being hospitalised at least once a year, but my consultants all think it is working for me so I'll carry on taking it. The thing is we are individuals and experience our disease differently. Let's try to stay positive.

Wal70 profile image
Wal70

Yes and had a bad reaction to the drug

Feio profile image
Feio

The side effects were awful. It made my skin very dry and itchy.