31%. I have had PV since 2005 and been on Interferon most of the time.
Logically I think 31% is good. In fact great. Am I right? Should I dance for joy?
I haven't got the medical knowledge to relate it to the bigger picture. I may get more info when I see the consultant but I thought I would ask for your imput.
Many thanks
Mairead
Anything below 50% is good, so 31 % is great. No one knows how much better 10, 20 or 30% are compared to 50% , but the lower the % the better it is.
Can I please ask because I dont know the answer to this but does a person's AB percentage increase over time, eg. the longer you have a MPN?
How does one get to find out their percentage. Is it something shown in blood tests or is it a special test you have to request. Will it already be in our notes somewhere? I've never been told anything about this by my consultants. I've only ever seen it mentioned on here.
Carol
Same in my case Carol, but when I see the consultant next month I will ask. It probably is an expensive test that is not carried out routinely. I have seen it mentioned in other groups too , but I am not sure whether its interpretation is widely agreed amongst the medics. In any case, I will ask.
It is an expensive test is my impression- I’m in Boston with some amazing hospitals and they still had to send my blood off to another hospital to get the AB. My doc will plan to check it again at my one year from the initial PV diagnosis. Ive been on Peg for most of the time too. Should be interesting to see what direction its taken.
I am in Canada and was just told by my haematologist that the test is not provided by our health care system. When I asked to have it done because it might offer prognostic information he said that it would be user pay and done by the Mayo. This was my first appointment with elevated platelets and still waiting for JAK2 V617F to be done for more confirmation of probable ET. Both my father and his brother had MPNs. I figure if it walks like a duck......
I asked to have the allele burden test done after reading and hearing about the usefulness of knowing it from many different sources.
Since I have PV for 15 years it was agreed. I knew I was JAK2 positive since they did that test at the beginning but I had no understanding of its significance at the time. And I guess at that time it was a yes or no answer. It would be great to find out what the burden was then but I doubt I can find this out.
Re how to test. I think it is easier for teaching hospitals as they have greater numbers of patients and better facilities. But my request was rejected for a long time on the grounds that it was not necessary. Cost was not mentioned as a factor, although of course it is - for everything.
I think it was done for a number of reasons and maybe having PV for 15 years and being on Pegasys for most of that time featured in the decision. I see the consultant to discuss the results next month but Manouche's reply has told me a lot.
I hope this answers the questions above.
Mairead
Are you in the UK? If so I guess that it is provided by National Health. It is not provided or paid for by our version of National health.
I wonder how much it would cost for you? I spent time in New Zealand and they have labs that you just turn up to and fill in a form for whatever blood test you need. Pay. then results are available on line using special access code. I found that system so efficient. I didn't need to go to doc and get permission etc. Do you have something like this in Canada?
Got my JAK2 result today: 49.9 % . I was initially diagnosed with a 83.8 JAK2 allele burden. It seems that with a 40% drop in 12 months Pegasys is doing the job very decently!
Reading your replies, the questions here are largely already answered. I see you have been on Pesasys, and never had an allele test prior to the one you refer here. It is good to get this info at Dx if possible, but as in this thread, some health services won't do it or pay for it. Also, your Dx was quite near the 2005 date the Jak2 mutation was identified as relevant to MPN. So your provider did a good job in at least looking for it since it was so new then.
.<<In 2005, a point mutation in JAK2 (JAK2-V617F) was identified in a number of neoplastic
myeloproliferative disorders>>
tandfonline.com/doi/pdf/10....
--
I saw a recent post of yours about being on INF for 15 years. That is much longer than most of us to be continuously on it.
In this old post, is that your first allele burden (AB) reading? You may have seen other posts where PV patients' AB went down from about 80% to 30% or even less. So you may have had similar success.
Can you say which interferon you have used? At the time you started I think Peg-Intron was common. Later Pegasys was more so.
Thanks for query. Yes that was first AB I had done as it was only starting to be available. I will be very interested in having it done again in a year or two.I had about 6 months of regular venesections from 05. The local haematologist recommended Hydrea. I didn't get on with this. I was a member of 2 MPN forums based in US. One was run by Robert Tollen now deceased. He was a great advocate of Interferon and encouraged me to get it. My haematologist hadn't heard of it. So I got private referral to Guys in London and learnt about it. Then my local haem very kindly got me the pen type Intron. That was so much easier to administer then the Pegasys I got later.
I have never been able to fully tolerate Pegasys. I have very bad times of reactions to it or moderate. But I think it's my only option. Venesections were random and infrequent until I decided to keep HCT at .38. I achieve this on .45 every 10 days. So I have had no need for venesections for about 10 years. I hope this will last.
I am on a roll of good reaction to Peg for last 4 injections. I hope that too will last.
Our UK England health system hasn't approved the new Interferon. However I don't know if I will be considered, due cost and age. I am 73 and I feel I have been blessed to have had interferon for all this time.
But your query has alerted me to think of asking for a new AB. After all it's a blood test and can be added to regular FBC. Time will tell.
Thank you.
Great to know you're ok lately on PEG. In an old post I noted some info on Pegasys vs Intron, Pegasys may be more effective. Anyway I think Intron may be no longer available.
Many members are doing well on PEG.
I looked up Mr. Tollen, a very outspoken advocate who probably made a difference getting the INF message out. The earliest INF was not pegylated, meaning it required once a day or more injections. That was quite hard on the body.
Is JAK2 Allele Burden Monitoring routinely done?
JAK2 allele burden
JAK2 Allele burden 17%
Blood Results Allele Burden Query
