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Results of Pegasys Study

Results of Pegasys Study

As I mentioned in a post a couple of weeks ago the clinic I attend now has about 45 patients on Pegasys, with very encouraging results for both ET and PV. They presented their findings at a congress last week and I've attached a copy of their poster here - not sure how legible it will be so if anyone would like me to send them a copy please PM me with your email address. I've been on Pegasys since last October for my ET and am very pleased with it so far - fingers crossed..!

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Hi Andy, thank you for posting this.  I am on Pegasys for about 6 years with mainly very good results.  I would like to read the poster and learn more.  I can't expand it on my tablet.  portermme@hotmail.com 

Many thanks Mairead

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This is really interesting but my haemotologist says I am considered too old at 72 to use interferon.  HU is not really effective any longer and Anagralide caused anaemia so he wants to consider radio active phosphorus.  Not keen!

Sally

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Sally

I am no expert but would challenge yours haems view that at 72 you are too old, I have never heard of that and know several 72+ year olds who are doing very well on Interferon and also Peglyated Interferon, not everyone can tolerate Interferon but those that do do very well usually. I can see how age is a factor. I have studied Interferon and read all the papers and never heard of anyone being too old for it.

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My haem says that 70 is the upper age limit in UK, 75 in Europe and in USA there is no limit.  He did say that he would use it if I really wanted but there are side effects which can be worse if you are older.  He is a very good and caring doctor who will spend time discussing options but I think he is a little behind the times.  

Sally 

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Not sure how to private email you but would appreciate a copy of the poster being sent to 

911solutions@gmail.com

Was it from this conference?

emedevents.com/conferencevi... 

Thanks Bryan

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Hi Bryan - it was from that conference - I've emailed it to you - let me know if you get it ok. Thanks, Andy

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Got it Andy thank you.. Are you aware of a site where other posters or presentations can be downloaded? Thanks, Bryan 

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Nothing that I'm aware of - this one was passed on to me by my haematologist, who is one of the authors. regards, Andy

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Great! Andy, could you send me this picture? I wanna write an article for my italian group of patients with ET and PV. This is my mail: davidesimeone@hotmail.it

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Really interesting Andy. Please could you email me a copy of the poster? Thanks. :)

denicecurrie@yahoo.co.uk

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Hi, I would also appreciate a copy of the poster. Thanks Andy.😉

chutneynod.ward@outlook.com

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Hi Andy, I would like a copy also. Thanks for taking your time to share this. Gail

lostexangj@gmail.com

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Hi Andy, Thanks for your post. I'd appreciate if you could also email me a copy of the pamphlet please. lottytravel@gmail.com

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Thankyou for sharing this Andy T.  I hope to be selected to start on a trial for this soon so please Email this to me too

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Forgot to include My Email address in my reply        It is shrlyfrrw@gmail.com Ta

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Could you e-mail me also Andy my e-mail is bfbraun@outlook.com.  I am going to an expert at Hopkins next week and would like to that with me as I am hoping to try pegasy.  Thanks Mickey

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thanks Andy T for sharing. Could you email it for me: hongnhi122@gmail.com. I'm interested in it.

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Hi Andy, thanks for this, would you email to me please?

Jo.houchin@googlemail.com

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Andy, thank you for including this poster. I would like a clearer picture to send to my haem. Can you email me at ron.wand@bigpond.net.au? Glad you are doing so well.

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Hey Andy... :)

Thanks for this offer, I would also like to be included if you do not mind emailing me:

steven@serpentsofterranullius.com

Do you know if there are any possible conflicts of interest between the authors and Big Pharma etc...?

I cannot as yet access Pegylated Interferon here in Australia because it is not covered by the PBS. So I must inject three times per week instead on once because of profit margins ... However, I will be interested to have a read in any event, as I have another peer-reviewed article that suggests that Interferon completely reversed the molecular structure of PV in one patient...?

Happy to reciprocate and send you that article too if you wish...? Just let me know.

Steve (Sydney)

ET/MF?

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Hi Steve - I've emailed the poster to you and would be very interested to see the other article you mention.

Thanks

Andy

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Hey Andy... :)

Morning... Thank you so much and I shall reciprocate with the article asap.

I am off early this AM to commence my first experience w/ Interferon as discussed etc...

On the brighter side, this very small hiatus from HU for three days has proved at least to me, that the mental fog that I was experiencing is largely due to HU, as I literally bounced out of bed this AM at 05:40 and I have not done so now since this whole event began.

It is such a wonderful feeling to realise how much of that fog/fatigue etc is and should be attributed to the HU.

Naturally, I am not looking forward to Interferon but if it can reduce my spleen size then it will have proved most useful...

Steve (Sydney)

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Hi Steve - hope all goes well and interferon works better for you than HU - I get dry skin and a few mouth ulcers for a few days after I inject but they are manageable..!

Cheers

Andy

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Hey Andy... :)

Just emailed you with two (2) attachments on Interferon etc...

How do you manage your mouth ulcers? Have you tried rinsing w/ Bicarbonate Soda? It seems to work but its not so pleasant... :)

Steve (Sydney)

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Hi Andy, I know I'm rather late asking but would it be possible to have a copy of the poster if you are not sick of emailing it please franbond@hotmail.co.uk. Thank you very much, I'm about to change from Hydroxycarbamide to initially low dose Pegasys so any info would be much appreciated. Best wishes, Frances.

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Hi Frances - that's fine - I'll send it through now. I've been on Pegasys for just over a year now and am finding it very good 😀

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Andy, is it possible for you to send me a copy of this poster, my apologies that this is a late request. My email address is tessa@thecoachingteam.co.uk

Many thanks

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Hi Tessa - no problem - I'll send it over shortly

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Please could you also send me a copy of this? I want to show it to my consultant or take it anywhere else to 'beg' to be put on this. So disappointed with his disinterested attitude. I am considered high risk and platelets not reducing after 3 weeks yet all the side effects are ruining my quality of life plus deep depression on some days. I would really appreciate it. pmmars01@aol.com.

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Will email it to you this morning. 3 weeks may be a bit short to judge whether HU is effective in reducing your platelets but it’s worth discussing other options if side effects are a big problem for you.

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I need to be attending your clinic!!!! I'm willing to bet my doctor will not allow me to go onto Pegasys, although all that I read would suggest it's the ideal drug for me. in fact, the only one which would have the desired effect without the crippling side effects.

All the best

Penelope

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No harm in seeking a second opinion if you don’t feel your doctor is open to exploring all the possibilities. Maybe talk to your GP and see if they can assist with a referral to another clinic?

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June 6th. that is exactly what I'm going to do. At least I now have a GP who hears other people and has the mind to consider feelings and opinions.

Wish me luck.

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Good luck..!

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Penelope, i had a very similar thought, 2 years ago. I fought for Pegasys in the uk. I was given the go ahead, through a second opinion. But Pegasys isn’t the answer for everyone. Every drug has side effect. Pegasys has worked wonders for me but I still had to deal with my every day thought that I was broken. Hope this helps. Eleanor

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Hi Eleanor

Yes, I recognise that fact but know that hydroxy was not right for me. My adverse effects were too painful and debilitating to accept. My body was definitely not tolerating it. I felt as though I was being poisoned. ATB Penelope

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