Had my updated CBC and CMP on 05/09. The news is uniformly good.
HCT dropped a bit to 43.8%.
PLT is up a bit to 436, but still WNL
LYMPH up a bit to 1.13 (low but almost WNL – 1.18-3.74)
A few off-numbers on the CBC, but nothing to be concerned about.
All of the CMP numbers look good. No issues with liver or kidneys.
I continue to have no adverse effects from Pegasys 45mcg/week at all. I am hopeful that things will get even better as my iron levels return to normal while the PEG continues to control the erythrocytosis.
I would particularly like to see energy levels/stamina return to normal. I expect part of the issue is a bit of deconditioning from too little exercise. Will just have to push myself harder. 🏃♂️🏋️♂️💪
Even more good news. I tested negative for COVID after being exposed last weekend. Either I got lucky or getting the third Moderna vaccine was really effective.
All the best to all of you all.
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hunter5582
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Hi Hunter, it seems as if you’re heading quite quickly towards a complete haematological response!👍🏻
« CH-CR is: hematocrit less than 45% without phlebotomy, platelet count less than or equal to 400 × 109/L, white blood cell count less than or equal to 10 × 109/L, and no disease-related symptoms.
In brief, for patients with PV, a complete remission (CR) required resolution of disease-related symptoms and hepatosplenomegaly, peripheral blood count remission (PBCR), no progression of the disease, no hemorrhagic or thrombotic events, and bone marrow histological remission (BMHR). »
You certainly tested negative to Covid-19 because of your 3rd jab, but also because of Pegasys.
« seems that patients on IFN don't have more adverse events and are likely to develop highest levels of antibodies, consistent with its immunostimulant activity, according to AndreasHochhaus & Tiziano Barbui »
So glad that PEG is really working well for you! Great to hear! Also glad you tested negative after your contact with Covid. Keep up the good work! Fran
Hi Hunter, positive news, hope it continues going forward, you must be really pleased and with some relief thrown in too.Yep, know the feeling of needing to push myself to do exercise when feeling very very tired. Luckily for me going out to work in the garden is right by my back door, so not far to go. I also love the autumn, just going for a walk at this time of year I find very rewarding. Hope you find your active energy soon.
Thank you for sharing your story and for all the help and advice you give.
I only wish that I could say the same after being on Pegasus for 10 weeks I feel like a completely different person but negatively rather than positive. My quality of life has deteriorated feeling low tired and not much enthusiasm about anything I am going to speak to the nurse next week.
Sorry t hear you are having a rougher course of PEG. We are all different in how we respond to the meds used to treat MPNs. Not sure what dose you are at. Perhaps a lower dose would be easier to tolerate. If not, there are other options.
I’m so glad that Pegasus is helping you I am on 90 I started on 45 alongside hydroxycarbamide but my bloods dropped so much they took me off hydroxycarbamide completely but then my haemoglobin and platelets went too high so they increased the dosage to 90 but then because my blood results went up again they ordered a venesection which I had last Wednesday I have more blood tests in 2 weeks time.
Great news! Hope things continue on this positive path! My 3rd week of Peg starts tomorrow - have CBC next week to see how things are going and to see if we can drop HU to 500 from 1,000mg (was at 1,500mg) - feel a little tired and achy day of and after shot but other than that OK (have a few skin ulcers on torso that have recently developed - thought initially they were just more itching issues (which were extreme on HU) but developed..hoping it is the last of the SE from HU (and not the first from Peg)
The skin ulcers from HU do occur and are considered a reason to d/c or at least reduce the HU. I would think you will see this AE will resolve when you are off the HU.
Congratulations, Hunter! Any reaction to Moderna#3? My GP recommended #3 8 months after #2. I'll comply but am a bit anxious.
I, too, am having a good experience with Pegasys but it has taken longer and required larger doses with more side effects. Over the last 6 months the specialist has dialed back from 180 every 10 days to 90 every 14 days and my CBC is holding steady.
I (72, male, ET/JAK2+ [low AB]) started 45mcg Pegasys at the same time you did and appreciate the improvements in erythromelalgia and brain fog as well as cutting my platelets from 470 to 240. I have also wondered about my recent reduced exercise capacity, but I think mine is likely related to a newly-realized food sensitivity, my valley fever, or an increase in mitral valve regurgitation. I should know if it is the food issue in a couple days and can follow up from there. Good luck!
Most docs start at 45 or 90 mcg and work up. There can be issues with tolerance to PEG as you have experienced. Hope the dose titration works.
I did have a much stronger reaction to Moderna dose 3. My arm was sore and I felt like I had a 24-hour flu. Felt fine 2 days later. Would much rather have a 24-hour flu than COVID. I jut take it as evidence that mu body got busy making antibodies. I did not have much reaction to the first two doses.
Hi Hunter5582, I always enjoy hearing from you. You are a wealth of information and put it in a form that I understand. I'm glad you continue to do well.
Hi Hunter, this is great news. I am glad that you are doing so well on your treatment. And that you tested negative for Covid-19 ! Good news all around!
Glad its working Hunter- sounds like its been a quite a ride. Pegasys (5 months in ) at 90 mcg/week is controlling my hematocrit as well. Now 3 months without phlebotomy. Other blood measures improving as well and side effects not noticable lately.
Getting here late to hear the good news. You are the best helping all of us. I learn sooo much from your posts and your recommendation to find a specialist has finally happened. Will see him in a few days. It’s a trip we aren’t looking forward to, but hopefully we won’t have to go often. How many times a year did you go in the past? I need an idea, if you don’t mind. Again thanks!
I was going annually. Have bumped I up to 2x/year since starting PEG. Note that I have a local hematologist that handles my ongoing care. I have been doing labs every 4 weeks and seeing that doc about every 8 weeks. This arrangement works great. MPN-expert consultation from 2-hours away and a local doc for the more frequent stuff who is a terrific doc, but not a MPN expert.
Thanks, so much! Exactly what I wanted to know. My Hematologist is here in Orlando. I see her every 2 months. She’s knowledgeable and most all MPN patients here in Central FL seem to use her. I see her the day before I see Dr. Kuykendall at Moffitt Cancer Center in Tampa. My Dr here can’t decide if I have ET or PV. She says my first diagnosis was ET but she seems to think it’s morphed into PV. I’m really curious to hear what he thinks.
I was very sorry to hear about your progression to MF, but it seems that the new protocols are working. I’m happy for you and hope it will continue to be so.
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