My wife has had PV for four years now with an elevated HB level and platelets always hovering around the 750 mark. Her doctor prescribed her pegylated interferon and her blood levels rapidly dropped in the space of a six months to what is classed as 'normal'.
Once she reached this stage her doctor stopped her medication and her blood levels have not really changed since coming off the medication. This was in December 2015 so for the past 15 months her blood levels have remained completely normal and never have they been outside of the normal 'average' banding categories.
She is still Jak2 negative so naturally is not cured but i just wondered if anyone else has experienced anything similar whilst on the medication?
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LondonKid
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Great news - I've heard of this in both PV and ET patients and think you'll find papers online documenting trials where complete remission has been achieved with Pegasys. Not there yet in my case - I have CALR+ ET and I've been on Peg for about 18 months. I am hoping to try a break one day but at the moment my haem wants me to continue with monthly injections, which seem to suit me well.
Good luck to your wife - I hope she stays in remission without medication - that's a great result.
I have just read the leukaemia.org posting that you kindly added to your post. Great news ans what a great lady. It just goes to show that we should never give up and keep on fighting for our rare voices to be heard.
I will watch the outcome with interest.
Is it possible for you to clarify something for me please. Is Pegalated Interferon, Interferon Alfa - 2a, and Pegysas all the same drug, or are there several types of the drug?
I wish I could help but I am on Hydroxycarbomide and have been for five years. This has made me think though and I will ask about alternative medication at my next appointment. Lesley x
I am probably being a bit thick, but I thought that Jak2 negative meant that you did not have the Jak2 gene, and those who are Jak2 positive (this is me), have the gene and that is how we are classified as having an MPN.
Obviously it is not that simple and I am completely wrong.
I have read the reply to your post by Sand Dancer and found it very interesting. Could this possibly be a break through for some of us at last?
I pray that your wife continues to keep well and she can stay off the medication., Good luck to you both.
I think that we all have the Jak gene but if you are tested as positive, that gene has mutated.
If , as in my case, you are tested as negative that particular gene has not mutated.
However, my Calr gene has mutated so I am Calr positive. There are a few MPN sufferers who are negative for both genes but they still have an MPN.
I have E.T. (13 years diagnosed) when tests for Jak were not available.
As I am not medically trained I may be talking a load of rubbish but this what I have gleaned from information out there!
Mpn voice web site has lots of correct information on it. However, there is a lot of research and new things discovered all the time so ideas do change.
Hello a Judith, Thanks so much for taking the time to reply.
What you say makes sense to me. I guess that those MPN sufferers who are negative for both Calr and Jak but are told that they have an MPN are the ones with really high platelets. Perhaps tha doctors make a dx based on that fact alone.
It probably isn't that simple and I am surmising a lot but I was only diagnosed just over a year ago, so I don't know very much yet.
This is a great place to be in. Not having to take interferon and HCT in normal range is a dream for us all.
I have been on interferon for 10+ years for PV. I had a period of about 9 months drug free and counts normal. No apparent reason. Probably the bone marrow was less active.
Then I returned to yo yo ing between too high and having venesections and too low due to them. Went back on Pegasys and eventually it took control again.
I have been on varying doses of Pegasys since then to keep HCT at or below 42. I need regular blood tests to check this.
May your situation continue indefinitely. Best of luck.
Hi LondonKid, that's fantastic news and something that gives us all hope. I am a bit mystified by your last paragraph though, 'she is still jak2 negative so naturally is not cured.' Did you mean jak2+?
Yes, I have been in remission now for 7 years! I was on Pegasys for 2-3 years and only stopped because I developed a rare side effect.......lung lesions. No need for any mess but baby aspirin.
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