MPN Voice
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Good results today

Good results at my 3-monthly clinic appointment today - platelets 349 with other counts OK too and LFT back to normal 😀

Staying with Pegasys 90mcg every 4 weeks and reducing aspirin to 3 days a week rather than daily - my choice as I'd like to stop/reduce aspirin after being on it for 14 years even though my haem doesn't think there is much risk of bleeding problems.

Still pleased I chose to go with Pegasys and hoping it continues to work this well..!

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Hi Andy, thats good news for you, may it continue. Ive seen my consultant this week he was pleased with my platelets 386, continuing on Pegasys once a week and aspirin once a day, seeing consultant August

Linda

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That's fantastic news Andy, delighted for you. 🤗

Mary x

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Great news Andy, lovely to read a success story! Best wishes, Frances

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So pleased for you Andy - I still have about 1100 to go to get back to "normal". Hu seems to be doing the job (although slowly) - unfortunately Pegasys is not available on the PBS in Australia and the cost is prohibitive.

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Hi Andy well done , i do like to hear good results ! we all seem to live from one blood test to the next eh , i see my heam on the 14th fingers crossed for good news also take care Holly

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Glad to hear your good news Andy, long may it continue!

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Great news Andy so pleased for you...

Violet..x

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Thats great news Andy ! Can I ask if you began treatment on the inteferon that you have daily before starting on Pegasys? My Haem has discussed me starting on either HU or Inteferon but says I cant start on Pegasys straight away . She says I have to try the normal injections first and if they dont suit me they have to apply for funding for Pegasys. Is this right ?

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Hi Jodary - I went straight onto Pegasys. I've never heard that approach suggested before, as one of the main advantages of Pegasys is that it has less side effects than the daily version, so it doesn't seem a very logical test. Better to start on a low dose of Pegasys (45mcg) and see how you tolerate it - that was my haem's approach.

Funding seems to depend on your location - I'm lucky that in my region of the UK (Leicestershire) Pegasys is funded as a first choice treatment for ET and PV but I have heard that funding can be a barrier in other regions/countries.

Keep pushing to try Peg - good luck..!

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Thanks Andy, I live in the Nottinghamshire area, but Leicester is the same distance for me as to travel to Nottingham Hospital. I will definitely push for it, and maybe ask to travel to Leicester instead if they are not forthcoming with it as a treatment option. I am still only on aspirin, my platelets have started coming down since I turned 60 this year, and based on age alone they have started to put on the pressure for starting treatment. My platelets this last time were the lowest they've been for 5 years, 762.

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Sounds like a good idea - I've been seeing Dr Qureshi & Dr Garg at LRI for 11 years now and rate them highly. There is an MPN Voice patient forum in Leicester this Wednesday afternoon if you can make it - Dr Garg will be there and is very pro-Pegasys. I can send you more details if you're interested in coming along.

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That's very good of you, unfortunately I am away from home this week. I am not sure if you can ask to be transferred to a different hospital , I am still in the mind set of not wanting to start treatment. My consultant still says its entirely my decision and I therefore keep putting it off as I find it hard to make that decision when I feel so well and now my platelets have started to go down ! Its so helpful to speak to someone like you tough who has had such success.

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I think you can fairly easily request a change of hospital and/or a second opinion.

I was keen to defer treatment as long as possible too but the combination of reaching 60 and counts consistently over 1,000 forced the issue..!

If your counts are going down maybe wait a bit longer as my understanding is that 60 on its own isn't enough reason to need treatment, so long as you have no other risk factors.

Good luck..!

Andy

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Thanks Andy , thats why I get so confused .Theres so much conflicting opinions on when you should start treatment

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