Platelet levels normal...can I stop?

I've now been on a weekly dose of Pegasys (Peginterferon) for ET for about 4 months. My checkup last week showed that my platelet count is now below 400. Hurray! Now due to financial concerns (I need to pay for the injections), I am wondering whether I can stop this treatment but keeping regular checkups. Maybe just keep taking aspirin. Has anyone been in a similar situation?

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11 Replies

  • Firstly talk to your doctor/specialist. I wouldn't ever just stop treatment. I too have to pay for medications and its a real nuisance but better than the alternative!! Talk to your doctor/specialists maybe they can find a way to help??? Bruddery

  • I'm on Pegasys too - only about 6 weeks but counts already down to 450 so only injecting every 2 weeks now. Hopefully your haem will suggest reducing your frequency too, now your counts are good, but stopping altogether may see them rise again... Good luck, Andy

  • That's good to know. I'll speak to doctor next visit.

  • I'm on Pegasus too. Been down to normal levels for last 6 months my understanding is they can't stop as it will revert back but they can reduce in interval I'm Injecting 2 weekly now hoping to move to 3 weekly in a few months if it stays the same

  • Excellent, thanks!

  • Hi I disgust this with my consultant this week as I've read about Pegasys from many on this forum, I like the idea of having an injection once a fortnight instead of of daily drug. Also, if I'm correct, I picked up from the London forum last month that in Sweden it's the first line drug they use there. My consultant explained that Pegasys can cause more side effects and that here Hydroxy is the first line drug and if the patient experiences side effect on that that they cannot tolerate they try Pegasys. I'm not sure if it's more the case that Hydroxycarbamide is cheaper. I think also the patients age has a bearing on the decision of what to use. I would imagine if you stop taking it your levels will rise again, that's what I've been told and that I will probably be on it for the rest of my life, age again makes a difference I think. You will have to take the advice of your specialist and not mess about with drugs or doses yourself as you could become more sick I would think. Good luck.

  • Hi, I have just read your message and remember reading about free prescriptions with ET sufferers. Look it up here on the fourm . Paul42 is a good start. You will need an exemption certificate from your GP.

  • Craigdarcy you are quite correct prescriptions relating to your E.T. are free because it is classed as a Cancer. Your G.P. and/or consultant can sign the relevant form for you. Good luck dengor.

  • Unfortunately in Hong Kong Pegasys isn't free yet.

  • And in Ireland we pay too.... No free meds in my circumstance. Bruddery

  • Update: just saw doc. Platelets now around 370. Asked doctor if I can cut down on the number injections. He said yes slowly. So now I'll be on an injection every 10 days instead of weekly. Doc said next time maybe cut down again.

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