Hydroxy intolerant - Pegylated Interferon next?

[JackLina]

I am just wondering if I should try Pegylated Interferon because I have been so debilitated by the hydroxy and fed up of my haema telling me it's nothing to do with the drug or the condition. I'm ET and JAK2 and intolerant to many drugs associated with blood, except clopidogrel, which I have been taking now for a number of years.

I just need some information (other than all the trials and research I've read recently) about side effects and tolerance of Pegasys with clopidogrel.

I have read some horror stories. What has been your experience?

ATB Penelope

[Greenbus99]

Hello, my son started Pegasys in march for PV, but he is on aspirin and not clopidogrel. The Pegasys has been gradually introduced starting alternate weeks at 45mcgs and now up to 90 mcgs weekly so at this stage. He has tolerated this very well with no side effects , no flu like symptoms etc. He had some localised redness from the injection site on a couple of occasions which resolve quickly but over all no problems.

[JackLina in reply to Greenbus99]

Thank you so much for getting back to me. I may give this a try sooner rather than later.

All the best

[Mackydee123]

Hi Penelope, I started Peginterferon 4 weeks ago. It’s my first tango with drugs other than aspirin. I’m ET Jak2+ and in the past 4 weeks my platelets have dropped from 1073 to 800!

Side effects for me were feeling very out of it, every cell heightened, headaches, insomnia, restless legs, breathlessness and a 3D heartbeat, all of these symptoms were very noticeable but not so much that I thought of quitting. By the 3rd week I had no real symptoms to speak of. This week I’ve been hit with fatigue but that’s nothing new!

As far as I know the Peg is much more tolerable than the Alpha but it’s still a case of either you can take to it or you absolutely can’t.

Hope this is some use to you and hope you get your meds sorted soon.

Kerry

[Cecilie]

Hi Penelope,

I've been on Pegasys for a year and a half now and it is controlling my platelets really well. I had some flu-like symptoms at the start, on the day after the injection, but I don't experience any side effects any more. I would say that it is worth a try. Good luck!

Kind regards

Cecilie

[tessa46]

I am taking clopidogrel daily and Pegasys 45 Mcg weekly. I have a history of drug sensitivity and allergy but I have no side effects from this combination currently. I have ET JAK2+ diagnosed 2 years ago and have been on Peg 6 months with platelets now in the normal range.

[JackLina in reply to tessa46]

Thank you Thank you . You are so close to my situation and the fact that you are tolerating it is heartening. I feel that the only way forward is to give it a try and if i can't tolerate it, then at least I gave it a go. I will try very hard to go with it and not be too phased by the effects.

It was when I started feeling suicidal and my body blew up with water retention, I lost the use of my hands and the joint pain was so debilitating I couldn't do my daily walks that I gave up hydroxycarbamide. Beside the lack of breath it was too debilitating for me. I felt like a dying old lady. I cannot imagine I would have those symptoms with Pegasys.

thank you for taking the time to share your experiences with me. It has really helped.

All the best for your future.

Penelope

[ladymoi]

Hi Penelope

I have been treated for ET for 20 years now (though I didn't have that label initially) and I now take , along with other medication, clopidogrel, aspirin and hydroxyurea together with Pegasys Interferon (40mcg every 6 weeks} and it has effectively reduced my platelets and I grudgingly admitted to my Haemotologist that I find I can tolerate it very well, just finding it makes me a little more tired for a couple of days so I plan accordingly. I am really pleased with it's effectiveness which overall makes me feel better and lead a normal, active life. I hope all goes well for you too.

Ladymoi.

[JackLina in reply to ladymoi]

I cannot understand why you would take both pegasys AND hydroxy. I could't stand (literally) hydroxycarbamide.