MPN Voice
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Update on Pegasys for ET

After just 6 weeks on Pegasys my platelets are down from 1150 to 450, which my haem and I are both pretty pleased with - lowest they have been in over 12 years..! Now reducing to one injection every 2 weeks to see how that goes. White cell count is also down to lower end of normal so we'll need to keep an eye on that too but so far so good - very pleased I decided to try Pegasys...😀

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Thats great news, always a huge lift when you get good blood results.

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Fantastic news, very pleased for you , glad you doing well on Pegasys x

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Excellent news, really pleased for you x

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Hope the good results continue! X

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Great, so uplifting when you get good results. x

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Hi Andy this is great news! I am seeing an MPN specialists in December who only uses Angrylide or Pegasy for ET. He is at Hopkins. I also have another friend she has PV not ET but she was on HU for 10 months and went to Pegasy and is doing extremely well. Pegasy is very expensive here in the USA and the only way you can get it is to get help with it, that's is sad since it seems to be working and is being used in the Mayo Clinic in Trials for ET.

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Great news Andy. Maz

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Top man😝good news.

Ps, have you heard from Jedi reject?

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Hi Andy,

I remember you told me you have the same gene mutation problem with my hubby, CARL. I would like to check with you:-

a.) what is Pegasys? Is it consider chemotherapy?

b.) Is there any symptom or side effect after you take this?

c.) if i'm not mistake, you only on aspirin to control this sickness. Is there any reason you on Pegasys?

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Hi Joanne,

Pegasys is a slow release form of interferon alpha, administered by injection once weekly or less frequently as needed.

Technically it is a form of chemotherapy I guess, as it destroys some cells in the body but it seems quite mild compared to some. Typically it is used in younger patients and those who plan to have children.

Side effects can be flu type symptoms but I'm lucky and don't get those.

I started Pegasys 6 weeks ago as my platelet count was climbing to over 1100 and aspirin alone was no longer enough. My platelets at last test were down to 450.

Hope that helps you.

Andy

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May i know why you suddenly took this? Is it due to any symptom or not feeling well then only you start this medicine?My hubby went to Pathlab do blood test last Saturday his platelet reading increase a bit, 7 point. from 1190 to 1197, i wonder is this reading consider stable or become worse as we haven't get consult doctor and the reading really make me sad.

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Hi Joanne - I had no symptoms and didn't feel unwell but I will be 60 next year and with counts over 1100 that moved me into a higher risk group, so aspirin was no longer enough and I needed treatment to bring my platelets down. Your husband's platelets haven't increased by any significant amount since his last reading and being younger your doctor may be happy to let him stay just on aspirin at the moment - I suggest you see a specialist asap and discuss the options with them - good luck and don't be too worried. Andy

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Yup. We plan to see specialist next Friday. Currently no medication for him as doctor think he is in low risk category.

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