Changes to medication

[VTAR24]

Hi all as ye all know pegasys interferon is going off the market I am on 90mg every two weeks which I am tolerating ok even though its slow to bring platelets dwn they are 918 I'm cal r met with doctors today and they are on about changing me to hydra I have read ther are a lot of side effects to this drug and I'm worried about having to take this I questioned them on Besemri and they said we wud wait and see what happens with the news on replacing the interferon with something else I am 48 years old and living in Ireland can anyone advise me on what I shud do as I have one more injection left before I have to change tks in advance

[DougyW]

Not sure it's off the market just very hard to get. I'm hopeful Besremi will come in for the UK. Might be worth discussing reducing the frequency to extend the life of your meds

[Pachena]

I’m not sure how it is being handled in Ireland tho this may help maybe a bit - mpnvoice.org.uk/news/interf...

Here in Australia, we are now having our scripts delivered directly to our homes in a refrigerated vehicle. JustMeds supply is here.

[Mazcd Partner MPNVoice]

hi VTAR24, I completely understand your concerns about the side effects listed with Hydrea (hydroxycarbamide), but it is worth considering that this medication has been used for many many years and by many people and is well tolerated, though, as with any medication, there are some people who cannot tolerate it, I have been on it since 2008, and you might have some of the side effects, but you might not. I am sure you had similar concerns when starting Pegasys Interferon, as there are many side effects listed with that medication.

You can discuss this further with your team as to maybe trying Hydrea and seeing how you get on with it, and what alternatives there are available.

Best wishes, Maz

[VTAR24 in reply to Mazcd]

Thanks for your reply you are right I suppose I'm just extra worried because don't they say its a low dose chemo drug that has me worried really .

[Mazcd Partner MPNVoice in reply to VTAR24]

yes, it is classed as a chemotherapy drug because it causes the death of some cells in the body, it might help if you read the information on our website, you can also download a copy of the booklet

mpnvoice.org.uk/about-mpns/...

[VTAR24 in reply to Mazcd]

I will do that tks very much

[Charm33]

I'm also in Ireland and my doctors wanted me on the Interferon for my big spleen and mild fibrosis, but due to it being unavailable now iv been put on hydrea. I too was worried about starting it, especially as im only 30, but i know i have only been on it about 2weeks, but so far so good thankfully. Hopefully it's just temporary and my doctors reckon it may be available again for us start of next year.

[VTAR24 in reply to Charm33]

Hi ya I'm glad to hear ur tolerating hydrea well as I have to make the decision to go on it also for a while I suppose really we have to go with advice we are getting for doctors how are u feeling other wise I haven't really heard from many people in Ireland with this so it's nice to hear from you 😊 all the best

[Charm33 in reply to VTAR24]

I have more good days than bad. I experience quite a lot of symptoms (hence starting the hydrea) like fatigue, bone pain, migraines, spleen pain etc. So I hope the hydrea will help with that once my platelets lower enough 🙏 But I plough on and make sure to drink lots of water and get out walking or sea swimming which really helps me, as i have two children who dont want a mammy who lays about feeling sorry for herself im sure lol. How are you keeping yourself ?

[VTAR24 in reply to Charm33]

I am doing ok I'm on interferon since March 90mg every 2 weeks platelets staying around 950 now I'm have to start hydrea for a while as interferon gone off market for a while which I'm feeling a bit anxious about so I have to meet up with my hematologist soon to discuss this change over all I'm feeling OK good and bad days I have 2 teenage girls so life is busy I mainly suffer from severe tiredness and had been getting bad headaches but did upped my aisprin so that has helped a lot so basically try keep going exercise healthy diet it's not easy some days but thankfully we can manage this and stay positive.

[Charm33 in reply to VTAR24]

Absolutely. Heres hoping you tolerate the hydrea well 🙏

[EPguy]

The labels for all our meds are scary of one reads the details. As mazcd says above, HU (hydrea) is a mild chemo and many members have been on it for years. You might even find it gets your PLT down more than the IFN was doing.

As mazcd says, IFN has plenty of sides, and they can occur at any time, I suffered a worst case one of them.