I am getting along pretty well. Just did my first set of labs since initiating the PEG-IFN. Was at three injections when labs were done. Too soon to tell, but the numbers are moving in the right direction. Still no Adverse Effects noted.
5/19 6/04
WBC= 7.12 4.43
RBC= 6.43 6.46
HCT= 43.1 42.7
PLT= 677 529
Kidney and Liver function looks good on the CMP. The eGFR is looking better 77 and 76 since I picked up the hydration. I always stay well hydrated, but added 32oz of H2O to what I usually drink (something the Nephrologist recommended). It seems to be making a difference. Still waiting to figure out the kidney issues, but we will get that sorted out. Maybe my kidneys now have a bit of weakness and just require a higher level of hydration. If it works, I will certainly do that.
The hematologist checked my uric acid levels too. 5.7 and 5.8. Both within normal limits and at the level recommended if you have gout (>6.0). The hematologist does think that the pain in my toes/feet may in fact be gout even with normal uric acid levels. The pain is most prominent on my right big toe and the toes do appear red and swollen when the pain present. Still think it could also be mild erythromelalgia. Regardless, I do think it is PV-related and treating the PV is the likely best course of action.
So, on the whole - good news. Next set of labs will be in 4 weeks. We will see what the numbers look like then. All the best to all of you all.
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hunter5582
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After my week in hospital, a FULL check over, slight COPD, but medical authorities congratulated me on my epilepsy, ironic that I had recommended those particular choice of medications myself, as having condition for so long, choice was very low, Vimpat and Briviact, very hard to obtain on a regular basis, but having been on them since April 2018, and one seizure, now very pleased with them! Never in my long life of this condition has progress been that good! Hoping now out of pandemic's clutches can get old grey matter into some sort of working order, strict isolationism for me, a claustrophobic not a good idea! Good to hear you are optimistic about your progress!
Wonderful to know of your progress with peg interferon . Am following and learning from your experience since I am soon planning to walk down that path inspite of myself doing well with hydroxyurea ....
That's good to hear. And you don't mention any side effects from taking interferon which is also excellent. Hydration is so important. If I forget I get bad headaches. However I don't over drink before blood tests as I read somewhere that it can cause distortion in results. It's all a fine balance. During the last venesections I have had, thankfully in distant memory, I had blood going out of one arm and water in the other. I have to be vigilant, especially in hot weather. Best of luck.
Wonderful news, Hunter. So glad to see your numbers moving in the right direction. I do hope that the pain in your toe improves, as well. Thanks for the update.
Pleased to hear you’re getting along well with PEG-INF and blood results etc. Looking good. Best wishes for continuing good results especially kidney-wise. All the best, Fran
Fantastic news Hunter on your progress! Sounds like the PEG-INF agrees with you and is doing what it is supposed to. Good feeling when the numbers move in the right direction.
Good to hear about how it is going for you.You always seem positive about things, though it’s not easy going for you with everything going on for you with your MPN.
Since I joined our exclusive club as you coined it, I’ve gained much from your informative responses, both to me and to others. You’re a great and important asset to us all Hunter!!
Thanks for sharing that Hunter. I am so pleased for you that initial results look positive and I am pleasantly surprised that the interferon seems to be taking effect so quickly. I think some of the papers talk about a 12-18 month period to stabilise -but yours seems to be moving nicely. Long may it continue! Let us know.
It really is too soon to tell what impact the Pegasys is having. Some fluctuations happen with MPNs anyway. Still it is nice to have it fluctuate in the right direction. My next CBC/CMP will be next week. We will see how things look then. Hoping for good news going forward.
That’s great news! Glad you are not experiencing any adverse side effects with the Interferon and it’s having a positive impact on your counts. Wishing you continued good results!
Thank you for the encouraging updates. Hope you continue to do well on Pegasys and the lab values continue to move into the normal range. I remember you mentioning insomnia as one of your symptoms. Has Pegasys helped you sleep better or is it too early to tell?
No change on the insomnia, but it is way to soon to say. I suspect the insomnia is related to cytokine overload, which i expect will take longer to resolve. Complicating things is the fact that I also have Neurofibromatosis Type 1 which can also cause insomnia. It is a bit of a double whammy. In the meantime, thank goodness for Belsomra. While I would not advocate it for everyone, it certainly has been a Godsend for me.
Thank you for sharing. I think everyone hear loves hearing from you and how you are doing. I guess it is probably too early to determine how effective the Peg will be for you but 5 year studies for Ropeg (interferons) show that it is far superior to HU for many people, may take a year or two to know how well it will work for you. Please continue to keep us informed, wishing you well and continued success for your treatment.
I do think this is good news Hunter. Of course our individual MPN and the way it affects us prevents us from easily comparing our treatment response. Still sharing is what this platform allows and that is so lovely.
I have to say you do it so well and so consistently, which is a wonder, thank you.
And that being said I think some do respond to peg-INF fairly briskly so what you are seeing might be more than individual fluctuation. I am so happy to hear that you have not had any adverse effects either.
Fear of side effects due to interferon treatments might stop some people from trying this potentially disease limiting or arresting treatment. It is important for us to discuss this fully with our providers.
It is even possible that people who were early on given Alpha Interferon and were intolerant might be able to take the modified versions (Peg interferon or ropeg interferon).
My share is that I seem to be very responsive to Pegasys at pretty low dose. Hoping to keep it low, but trying teeny tiny increases with the blessing of my very understanding and watchful MPN specialist. The sweet spot for me with ET will be plts close to 400, normal liver enzymes and no appreciable side effects.
Being on PEG-IFN is I think a marathon. not a sprint. Slow and steady is the way to go. Hopefully my number will gradually decline and I will respond to a relatively low dose, minimizing the intrinsic risks of interferon therapy. The MPN Specialist let me know he intends to keep me on the low dose for now (45mcg) and see how I respond. Provided my number keep looking good, that seems like a good plan to me.
I do hope that more people and providers will be open to the opportunity that PEGylated Interferon provides. The newer forms if IFN really are something different than the older forms that providers seem to refer to in staying away from IFN treatment, Not that there can;t be adverse effects, but the benefits really are quite significant. It is the only option we have that appears to be truly disease modifying.
Regarding target levels for platelets, that is an interesting issue. Dr. Silver actually recommends 600 as the target for cytoreduction for people with ET. silvermpncenter.weill.corne... . Given that it appears that there is no linear relationship between platelet levels and risk of thrombosis (below 1 million) setting a target for platelet levels based on what is "normal" seems rather arbitrary. I believe it makes more sense to set treatment goals based on actual symptoms for each individual MPN patient. It is about preventing symptoms and improving quality of life, not having "normal" numbers on a lab. This does require a more sophisticated, informed and individualized approach to treatment. Which is why it is so important to consult with a MPN Specialist.
I hope you journey with PEG-IFN is successful and yields the outcome you hope for.
This is good news, Hunter, to hear that your numbers are responding to interferon; I'm so glad for you. As always, I so appreciate the thoroughness and clarity of your posts and all that I learn from what you write. Best,Kim
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Diagnosis update - PV - in limbo 
Update 
