I’ve heard there is no known connection between allele burden and disease progression or status but I found it interesting to find that my CALR burden has dropped from 50% last time it was checked while on Peg to now 39% on HU. Towards the end of my time on Peg it was rising.
Otherwise I hope everyone is doing well.
Hi. Thanks for the update. Was the rise in CALR burden the reason for switching to HU? I'm curious because I've been on HU for a few years and wonder if an interferon is a future treatment option? Good luck going forward.
I switched because I developed an unusual neuropathy and Peg appears to have played a role in its development. My last dose of Peg cause tremendous pain in my lower legs where they are weak now. Could have been a combination of Covid plus Peg as it happened in summer of 2020. And since Anagrelide was the first treatment I tried and didnt like it, HU was next best option. Rux didnt seem to work and made me feel really bad.
I do think Peg is worth a try. I had 4 good years on it.
Best of luck to you too.
Hi mate, you mentioned that RUX made you feel bad. What symptoms were you experiencing?
For first couple weeks, Rux made me feel like I was getting high like possibly amphetamines. I was very outgoing and talkative unlike my usual self. Then my platelets kept going up and about 3 weeks into it I started upping my dose I think it went from 10 to 15 then to 20 daily. Then had a couple problems getting the med on time so I missed a couple doses and felt a pretty intense withdrawal. All the while my platelets kept going up. After two months I stopped. I suspect it didn’t work well for me because my mutation is CALR. Not sure though.
I havnt heard others getting high on Rux, unfortunately I have yet to experience such despite high dose 😀
It’s common for platelets to rise initially on Rux but usually start to fall after a month or two. Mine went from 600 to 740 but now 190.
With Rux you can’t miss doses and any change in dose should be gradual and 3 weeks isn’t long enough on a particular dose to check it’s effectiveness
Thanks for the info ainslie. I may try it again someday and if I do I will remember what you said.
Do you have the JAK mutation or CALR?
im Jak2 PV and will say I dont know much about CALR, good health to you
I am impressed that your allele burden decreased so much with HU. Basically, I would not expect it to have any impact on allele distribution, based on its mechanism as a ribonucleotide reductase inhibitor. As for use of ruxolitinib with CALR-mutated patients, the early studies did not find that allele burden improved unlike JAK2-mutations. However, rux still was efficacious for CALR+ patients; this may be due to overall decreased production of hematopoietic stem cells. There does not seem to be much known about why interferons work with CALR+, but at least one MPN specialist said that it doesn’t work well at all for MF patients.
Thanks for your thoughts. I did get the allele tested about 2 months after undergoing 3 days of IVIG. That treatment caused severe cytopenia, my white cells, lymphocytes, neutrophils all crashed and platelets dropped down to 262k despite stopping Hydrea a week beforehand. So perhaps that helped tamp it down too. Generally I suspect there is an immune component involved in my blood disease that has become much worse in the past few years causing neurologic issues, possibly in combination with Covid. I also have rising MAG Antibodies in last 4 years. To go out on a limb a bit perhaps my Lyme disease from 20 years ago set in motion my ET that started 12 years ago. The Lyme was treated “successfully” but I’ve heard it can linger on causing trouble for the rest of our lives.
That is interesting. It is the first time I have heard a Lyme disease connection. Could be coincidental but I was also treated for suspected Lymes disease which was also thought to also be a possible cause of 2 bouts of Bells Palsy. I wonder how many other PV sufferers have had Lymes Disease?
That’s a good question. It may be related but the first few years of my ET I had very bad IBS in my upper abdomen. 4 years ago when my neuro symptoms kicked in it became almost unbearable, GRRD too. It took over 3 years of famotidine and gabapentin and occasionally omeprazole to calm it down. Now I only have some lower abdominal pain that’s mild. If I can resolve that and I’m hoping for feeling much better. Recently read that hot sauce in moderation can help microbiome so I’m trying it along with apples and salads. I ran my test results and some doctors notes from hematologists, neurologists, rheumatologists etc through chatGPT and it thinks I have an autoimmune disease. Could possibly be that once my microbiome is better any autoimmune problems will go away if I’m really lucky.
