I know there’s been a lot of research on the peg interferon being successful with complete molecular remission. It has been very exciting to read about this. I just had my hemo appointment today. I have been on the interferon for about eight months. 45 MCG weekly. Platelets down from 1.4 million to 500. So fantastic in that regard. However test results today continue to show the presence of Jak2 mutation. He told me there was a little chance of remission for me. I questioned him and he said it would’ve happened already. And I was like, so for sure never? And he said yes. Has anyone ever heard of this? Remission is obtained in the first 6 months or so or not at all?? Very depressing to think I have to be on this drug forever. Sorry so long!
Inteferon and remission?: I know there’s been a... - MPN Voice
Inteferon and remission?
Oh dear he has been misinformed. Perhaps haematological remission where your blood levels come into normal range, but even on a higher dose of 135mcg it can take 6 months or more at least. You have responded better than a lot of others, you should be really pleased with your results.
Molecular remission usually happens for around 20% of people 2-5 years after taking interferon. I may be wrong so someone else will need to verify this. I think it is very promising for you as you have responded so well. 😀
Thanks for that boost of info. fee! I will look into this. Doctors are sometimes like elephants in a porcelain shop. 50% of Healing and successful treatment comes from a good, trusting relationship between doctor and patient. That it stated in many medical books. Cheers!
Thank you for your reply. I do feel so lucky that my numbers look good and that I’m able to work etc. on the Peg. It’s just that his comment about the remission really threw me. I’m so glad to hear he may be wrong 😬
I have a research paper by DR Sliver with the percentage of patients experiencing molecular remission through interferon. I will try and find it for you.
Thanks. That would be great.
Do you know If the molecular remission is with people who have the JAK 2 mutation?
Yes it is
I was dx in 2016, JAK2 AB was 56%. It rose to 78% by March 2018 when I started Pegasys at 45 mcg weekly.
Slowly increased to 100 mcg over 12 months.
My WBC were first to respond after about one month, platelets two months and RBC after 12 months.
AB was 66% last August, 72% mid December and 39% last month.
So conclusion is that there is a high margin of error with individual tests and it takes time to work, in my case about 12 months for a conclusive result.
I also have the TET2 mutation and this has also halved over last 12 - 15 months.
I follow an anti inflammatory diet and wondering if this has helped re my good response to Pegasys - no side effects, my WBC dropped from high of 12 to 1.5, my Platelets from 600 to 120 and RBC from 6.2 to 4.8. Now drastically reducing my Pegasys to find Goldilocks’s dosage.
Hi Paul. Thanks for your reply. I have stayed on the 45 mcg at least for now. I definitely need to get more info as to the anti inflammatory diet, as people seem to really be talking about that with PV. So glad that you are doing so well! I am hoping that you are right and my doc is wrong.
What means complete molecular response? Is it like a cure?
It is my understanding that molecular remission, if it occurs, takes longer than 6 months. At 19 weeks my platelets, total white count, and hematocrit were all under control. At 23 weeks my LDH was dropping but high and my monocytes were still a little high. Itching has largely subsided. I am on 90 per week.
I too am hoping for complete molecular remission but I certainly don't expect it at 6 months. What is reasonable is to expect to be on a once a month maintenance dose of ropeg in a couple of years. I can live with that.
Yes I agree! Thanks so much for your response. Maybe it’s time for me to get a second opinion as well.
My haematologist would not agree. He tested me after a year on Pegasys and although the drug had brought my blood counts well within the norm my allele burden had remained at 75%. I was disappointed of course but he told me he will repeat the test when I next see him in October and that he hopes to see a reduction then. So don't lose hope!
If you don't mind me asking, what do these precentages refer to, and allele burden?
The allele burden is expressed as a percentage. It's basically the percentage of haemopoetic stem cells you have that are mutated. It's actually a bit more complicated than that. This PatientPower video explains it better than I can:
google.com/url?sa=t&rct=j&q...
this the first time i've tried to post a link so i hope it worked!
Ok- it totally worked. Now I udnerstand better. Thank you so much for sending that. Does this disease increase in severity if not treated? (I am only on aspirin for example). I know I'm asking alot of heavy questions, so no worries if you don't feel comfortable answering. But if Peg Infer. in some people, erradicates mutations, and may put some people into remission, I wonder why we all wouldn't try it- even thought of us that are "low risk."? Relatively speaking of course.... I know there are many factors as to whether or not peg Infer. would work in each case. You are all so unbelievably knowledgable, Thank you for always inspiring!!
As far as I understand MPNs are progressive diseases although how much and how quickly each individual progresses seems to be highly variable. There seem to be two schools of thought about how to treat them (or at least how to treat PV): hydoxyurea and interferons (including Pegasysy). I believe the reason some doctors do not prescribe interferon (apart from the cost!) is because the side effects can be difficult to tolerate and it is also much slower to act, typically taking several months (in my case almost a year) to get blood counts normalized. It's really important to find an MPN specialist you feel comfortable with and who can talk you through the various options. In your case, which seems to be relatively low risk, you need to consider whether it's worth taking what is pretty heavy medication for a (possible) slow down in progression.
Thank you so much. Feeling so very grateful for this site and all the support here! Thank you to all!!!
Everyone's body is different! I would still believe that the Jak2 can be irradicated. integrative doctors believe you can cure "irreversible" disease. keep believing! Tune out absolutes- you just never know!
Another thought Miriammusic- I am very excited to hear about this news, it's hpeful. Think about it though, if peg interf. puts people in remission, and changes molecular activity, then maybe your body just needs more time to do so.
My view is interferon does what it does. I never knew what my percentage JAK2 mutation was and I don’t know what it is now. From a patients experience I only care if I feel better on interferon, which I do. My bloods have been ‘normal’ for a year.
I understand you point, however I wouldn't exactly say "I feel better" on the interferon. It is great that you do! I feel grateful I am tolerating this small dose well and incredibly happy that it is "working" to bring down my levels. I do have side effects that are manageable but I would like to think that there is a chance for remission for me so I don't have to be on it the rest of my life. Not to mention the cost. Right now my current insurance pays $9,200 monthly for it but I can't guarantee that will always be the case.
Ah the financial conundrum. I’m glad I live in the uk. I expect to be on interferon the rest of my life or until a cure is found. Interferon, as with every drug, isn’t without side effects. I am tolerating interferon better than the blood letting (venesections).
Can I just ask.... why is it called Peg Interferon? Is it given in tablet form or some other way? My husband (PV) is due for a haemo appointment and we think he’ll be moving to drugs after being only venesections + blood thinner clopidrogel up to now. Apart from a couple of months right at the start where the gave him Hydroxy. Trying to research the options.
The P-E-G refers to polyethylene glycol. It is grafted onto the interferon molecules so that they stay active in the body longer than simple interferons. Pegylated interferons are injected subcutaneously as frequently as once a week. The injection is often given in the fatty layer of the lower abdomen. Diabetics on insulin do this frequently. It is no big deal.
Thank you Charl17. That is very helpful indeed! It’s possible that they’ll put him on the hydroxy again. I believe its the most common and the cheapest and best known. He did have some discomfort when taking it but at the moment he’s in a lot of pain and is keen to get that treated. Thank you again. I don’t know where to turn at the moment so your response is a big help.
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