Hydroxy to Pegasys switch: Hello - couldn’t find... - MPN Voice

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Hydroxy to Pegasys switch

intothewoods profile image
13 Replies

Hello - couldn’t find this on a search and wonder if you can help.

Here’s the context: Partner is 33, ET triple negative with acquired Von willebrand on 1.5mg hydroxy a day after heart attack and platelets approaching 2m. All under control now after a lot of time adjusting the dose.

We’re thinking of trying for a second child sometime in the next 12 months so would look to do a long wash out of hydroxy and then move onto interferon.

My question is - Has anyone made the switch this way? How was it managed?

I’m hoping we won’t be back to square one with getting counts under control.

Sorry this is so long!

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intothewoods
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13 Replies
fee13 profile image
fee13

From what I believe (& I could be wrong) the hydroxy will bring his platelets down faster. They may want to get them below 1 million at least as quick as possible. Some have combined both medications when starting interferon as it can take a 6 odd months to work. This would include a lower dose of interferon for a couple of weeks & usually upping the dose over a period of a month or so. So it could be a lengthy transitional period.

intothewoods profile image
intothewoods in reply tofee13

Thank you. Platelets are currently in a normal range so I’m hoping it won’t send them back up!

SuET2017 profile image
SuET2017

Hi

I am ET triple neg and was on hydroxy and had acquired VW. Due to side effects of hydroxy I am now on pegasys (for about 6 months now) with very mild and more than tolerable side effects and my platelets came down from over 1200 to within normal levels within 4 weeks of starting pegasys. For me it’s been great.

intothewoods profile image
intothewoods in reply toSuET2017

Thank you! It’s brilliant you’ve had a better response to interferon.

How did the doctor manage the changeover? Did you have a gap or did you take both at the same time in smaller doses for a while?

SuET2017 profile image
SuET2017 in reply tointothewoods

I did have a break, but only because I was so unwell from side effects. And then I tried the non pegalated interferon, again with side effects. Then had a break. And no I didn’t take them both at the same time, though my platelet count went up when “on a break”.

Mazcd profile image
MazcdPartnerMPNVoice

Hi, this information on our website might help

mpnvoice.org.uk/living-with...

intothewoods profile image
intothewoods in reply toMazcd

Thank you!

charl17 profile image
charl17

I have proliferative phase PMF. I was off of Hydrea for 10 weeks before starting Pegasys. It took a month to get my platelets back under control. Whites and reds took much longer. With your partner's ET the issue is probably high platelets. Pregnancy may not be wise before your partner has been off of Hydrea for several months. This might be the factor which delays pregnancy rather than the time it takes Pegasys to work.

intothewoods profile image
intothewoods in reply tocharl17

Thank you!

hunter5582 profile image
hunter5582

HU is highly teratogenic. It is very important for couples to wait at least 6 months for a woman and one year for a man post-discontinuing HU to have a child. You should also have been advised to use condoms to protect the partner while on HU as it passes into semen and vaginal secretions. Since HU is also a carcinogen and a mutagen, protecting the partner is important. Women of child-bearing age (not on HU) are advised to not even handle the HU bottle without gloves. I recently saw a reference to the same warning for men, though I have not seen that confirmed.

HU does work for lowering platelet levels for high-risk patients. For many people the benefits outweigh the potential adverse effects, but not for anyone who want to have a child. Hopefully your partner can work with the hematologist to switch over to Pegasys and see how it works.

All the best.

intothewoods profile image
intothewoods in reply tohunter5582

Thank you! Our haematologist said it takes 3 months for it to leave his system and then it’s safe to conceive. Do you have any links to data we can show her about the 12 months you mentioned?

hunter5582 profile image
hunter5582 in reply tointothewoods

This is from the monograph re. hydroxyurea on the ePocrates on-line application. ePocrates is a professional level drug information service

Pregnancy

-

Individuals of Reproductive Potential

obtain pregnancy test before tx start; avoid pregnancy by using effective contraception during tx and for at least 6mo after D/C in female pts and for at least 12mo after D/C in male pts

Here is a link to the monograph.

online.epocrates.com/drugs/...

You can usually look up one drug for free without a membership.

If you have any trouble, you can go to the base website and sign up for the free-level membership online.epocrates.com/ . This is a terrific service and offers professional drug monographs, patient education leaflets, and drug interaction check.

Please do be careful. While HU can be very beneficial for some, there are serious potential adverse effects .this is a toxic medication.

Hope that helps

intothewoods profile image
intothewoods in reply tohunter5582

So helpful. Thank you so much.

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