possible treatment change

[gilded]

At hospital visit today ( UK major London hospital), the Consultant indicated that the hospital could probably not source further supplies of Peg interferon as worldwide shortage . It was suggested that I might have to be prescribed Hydracabmide as a substitute. What is that medication and can it be easily tolerated? Am currently on 90mcg fortnightly.

[Mazcd Partner MPNVoice]

hi gilded, you can read all about Hydroxycarbamide on our website mpnvoice.org.uk/about-mpns/...

many people do take it to treat their MPN, I myself have been taking it since 2008 for my ET and I do tolerate it very well, it does keep my platelets low and also does help with the symptoms of dizziness and fatigue. Though there are people who cannot tolerate it due to side effects. But as with any medication, you may not experience any of the side effects and be absolutely ok on it.

Best wishes, Maz

[gilded in reply to Mazcd]

Thanks a lot Mazcd. I’ll read the link.

[Amethist]

a good source of information about medication is : drugs.com

You can type in the name of the drug and find out more about it and possible side effects.

I usually look at the professional version, so you can then have a full open discussion with your Dr. re all the pros and cons.

[gilded in reply to Amethist]

Thanks.

[Cavatonight]

It is a completely different kind of medication. Chemo rather than interferon. It treats the symptoms but doesn’t halt progression. It will probably be fine as a short term filler but push to get put back into an interferón as soon as the shortage is alleviated.

[gilded in reply to Cavatonight]

Thanks. Consultant prefers to keep me on Peg and trying very hard to source stocks.

[Cavatonight in reply to gilded]

Glad to hear that. Hope he manages to get some for you.

[Hidden in reply to gilded]

Think they will be lots of us that would be better staying on Peg, and stocks hopefully can be shared, lots of us in same boat. Stay Positive Hopefully all will be sorted soon It is scarey Think theres shortages evrywhefe now, even for other health conditions

[gilded in reply to Hidden]

Thank you!

[Quercus53]

Hi! I have the same problem which I think has been caused by one pharma's licence to make Peg ending and a new company to start producing our Interferon.. Obviously there will be a delay whilst the new manufacturer ramps up production.

My doctor has said to double the time between doses as my platelet count has been in the 200s - so there is a bit of leeway there. So now I'm on 45mg every 8 weeks.

If I can't get Peg after that I would rather do without for a while. At the moment I have enough until January. It makes it a lot easy to go away on holiday! And, who knows maybe that dose will continue once it is reavailable.

[gilded in reply to Quercus53]

yes, like you I have thought of extending the time between doses. Now on 90mcg fortnightly but could extend it to three weekly.. By then hopefully production will have restarted.

[Meatloaf9]

HI,

I am PV 75 and have been taking HU for over 3 years.

All my blood counts are good, so far.

I would not know that I am taking any drug as far as side effects go, I have none, so far.

Some people cannot tolerate HU, we are all truly different.

[Hopetohelp in reply to Meatloaf9]

Can I ask what dose you are on please? Glad it is working well for you. I will probably be going on it too

[Meatloaf9]

Hi,

I take 9 X 500mg pills per week. When I first started I took 14 X 500mg per week. It takes a while to find the right dose and then it may still vary as time goes by.

How were you tolerating the Pegasys? Any side effects? I have been thinking about switching to Besremi but I am thinking at my age (75) that it is probably too late to receive any benefit as far as slowing progression of the PV, several hematologists have told me as much but not directly.

Best to you always

[gilded in reply to Meatloaf9]

I have been on Pegasys 90mcg fortnightly.

[gilded in reply to Meatloaf9]

I tolerate Pegasys completely . No problems.

[gilded in reply to Meatloaf9]

I have had no problems with Pegasys.

[Tomaj]

I am on Hydroxycarbamide and I am tolerating it well. It is keeping my platelets stable. There are other issues, but they are not because of the Hydro.

[gilded in reply to Tomaj]

Thank you !