Sat here with a celebratory Twirl and cuppa following a call from my haem:
15 weeks into Peg and stopped HU 7+ weeks ago.
Platelets: 347 (337 in Feb)
Hct: 0.456 (she’s not worried about the ‘6’)
Hb: 154
Neutrophils: 3.15
So, no ‘rebound’ having stopped the HU. Seems as if Peg is ‘doing its thang’ and we’re to space out the appointments to ~12 weeks.
Thyroid fine. Liver ALT 57 (upper normal limit is 50), which could be due to Covid last week when I had my blood test (tested positive the following day and thought I just had a mild cold previously). Potassium slightly elevated at 5.6, but reckon that’s the increase in Ramipril. Again, not a concern and will titrate dose down a tad.
Haem’s delighted, so I’m pleased too!
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FG251
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I cancelled my gym membership for the ‘summer’ and felt I had to overcome my fear of the sun. I was only on HU for 14 months, but put plenty of Factor 50 and a sun hat on and did 5 hrs’ or so.
I’m working off a couple or three Easter eggs at the moment. I don’t do major exercise, but cycle to my Mums and back (5/6 miles) three or four times a week, and a bit of walking. Not bad for an old bird!
Little and often is my motto now. I went a bit crazy yesterday with the walking, but 30 mins a day is very achievable and beneficial. I don’t cycle but I shall be taking my Harley for a spin soon - not exactly aerobic exercise, but damn good for the soul!
Great progress. Were your counts also stable on HU before? I've read that having good control on HU makes control on INF more likely, but I'm not certain.
I will get my latest CBC today after ~2 months on Bes.
With active Covid Dx this report suggests it can lower WBC and PLT, but they excluded those with blood disease and didn't specify which WBC:
Thanks! Yes, I responded well to HU and decreased my dose from 1x500mg daily to 5 and then 4x500mg a week. The platelet count eventually went up to 433, so my haem reverted to 5 a week and they came down to high 300s again, by which time she’d agreed to switch to Peg. I’m hoping they’ll continue to remain stable - they may even drop still further - but I’m just relieved they’re well within normal limits and that I’m not anemic or neutropenic.
Looking forward to seeing your results when you get them. 🤗
Wooo Hooo …… That’s absolutely brilliant. I’m so so pleased for you. 12 week intervals is a good gap as well. Once we’ve found out we have to live with our MPN then we all know it’s about the treatment & it’s so good to hear from fellow MPNers when the treatment is successful.All the best
Hello, I am from Zagreb, Croatia, I have PV, I have been on HU 2-3 tablets alternately for 5 years. On Friday I gave myself my first PEG injection along with paracetamol. I am happy that I did not have any major side effects other than a bruise at the site of the sting. You give me hope for such a good result as yours. Primarily switching to PEG due to debilitating venesuctions and anemia, I believe PEG will control my hematocrit better than HU
Fingers crossed for you - let us know how you get on. If you could get Besremi eventually, the dosing schedule would be less frequent, which would doubtless give time for the site to heal. I’m on weekly Peg doses and in my iPhone diary I put a ✅ and ‘L’ or ‘R’ next to it when I’ve injected so I don’t forget to alternate the site each week.
Thanks a lot FG251, I hope it will be less bruises with time. This is not so bad, just waiting to see the numbers and hope for the good results as yours🙂
My injections vary: sometimes a tiny drop of blood as I withdraw the needle; sometimes I feel it go in; other times, nothing. For me it’s a small price to pay for a medication I feel I’m lucky to receive and I actually look forward to doing it! I sincerely hope your results are good and that they come soon - keep us posted!
From the posts so far it seems PEG is more prone to bruising than Bes. Bes US syringe uses a 30 Gauge- 1/2 inch needle (extra thin) . I barely even feel it. Maybe PEG's needle is larger?
I've had at worst a very small red area for a few minutes, it goes away like nothing happened. Usually no mark at all.
Is it possible PEG is being Rx with different sized needles? Could be some correlation if so. I've learned there is a naming system for them, my Bes came with a 30G x 1/2", looks like this. It's toward the small end of the size ranges.
You could well be right! I’ll experiment with speed/angle of administration, etc. Although I ‘felt’ this last injection, it really wasn’t THAT painful - just noticeable after so many completely painless ones.
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