My Dr wrote my Peg to be given every 2 weeks. I have had 2, so far, 90mcg, then 70 mcg. Yesterday, my HCT was up from 39.9 to 43.7 in a span of 10 days. I figured it was up because of the redness in my skin. Platelets are at 881 and white cells at 15. Everything is up, so I decided to not wait 2 weeks and injected today, 90mcg. I premedicated with Tylenol and Benadryl to see if that would keep the side effects at bay. I will have labs in 2 weeks.
Hope you all are doing well!
All My Best
Kim
I see from your prior post the previous dose was 6 days ago. That works out to a good sized jump in dose. Let us know how you feel.
Are you getting CMPs checked too?
Hi,Yes, the last couple of labs run included the CMP. It was last Saturday that I took the Pegasys. I may have misspoke on the day…
I was taking Peg once a week at 45mcg. I couldn't tolerate more even though my blood counts were always borderline and I still needed phlebotomies every few months. Now on Besremi and find bloods are more controlled and side effects are much less.
I was on 135mcg of pegs and Hydroxycarbamide, my members took a long time to come down to an acceptable level. Over 3 years,I was also having venesections.
My numbers are bit ok, no venesections, no Hydroxycarbamide, my pointvus that in my case pega took a long time to have aeffect.
My figures like yours initially went up for the first 2 months after starting peg and then they started the slow decline. It takes a while for the body to get used to peg. Good luck
Thanks so much! I was concerned that I would need a phlebotomy and maybe I will. I’ll know in a couple of weeks.
Sounds like a good plan. Hope it works. We have been hearing that some docs like to start the PEG every-other week to try to give the patient's body a chance to adjust so it is easier to get the patient up to a tolerable dose. 90mcg is often the therapeutic target dose for people with PV. I was doing OK at t45mcg/week for about 6 months, then my HCT started to creep up. I switched to Besremi at that point. if I was still on PEG, I am certain I would be at the 90mcg/week dose.
Hope the new plan is both tolerable and effective.
Thanks, Hunter. Fatigue and weakness seem to be the major side effects for me. I did not have chills and flushing, nor did I sweat all night this time.
Additional side effects seem to be getting me this morning. Nausea, some stomach pain and clammy skin…
If this plan does not work, perhaps a lower weekly dose would be better. Sometimes we just have to try different things until we find what works. Hope the AEs resolve soon.
Yes. I am rushing it, I suppose.
We are running a marathon not a sprint. The AEs we experience are a real problem. Very natural to want resolution ASAP. Hope you get it sorted soon.
Hi Wewo - It took me about 4 months after starting PEG (90mcg-weekly) for the side effects to lessen and to feel more like myself again. Then it took about 6 months for the PEG to really have an obvious effect on my blood numbers. It was a slow start. My HCT was creeping up a bit during that time also. And after about ten months my platelets have reduced from >1Mil down to 400k and HCT has steadied in normal range. Its a slow but steady process for PEG. Give it time and hang in there! It may take a few months for things to noticeably be heading in the right direction but remember you are on the right path! Good luck!
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