3 Peg injections later

[Wewo01]

Hi My Friends!

I hope everyone is doing well! Its been very hot and humid, here. I don’t appreciate it! LOL.

I have had 3 Peg injections and have my 4th this Friday. I am finding that my energy levels have plummeted. I am feeling weak and getting breathless with little activity. My HCT was 43.7 a week ago. I did not get a phlebotomy and perhaps I should have. Also, I had quite a few phlebotomies, so my iron is likely low. I realize those symptoms could be related.

I read information provided by EPguy, about how INF can cause some pretty severe fatigue in some cases. I am beginning to think I am one. I know Besremi is supposed to have less side effects, does anyone know if that would be true of this type of fatigue?

Thanks!!!

[EPguy]

I've had some increase in fatigue on Bes, but not severe so far. But fatigue is on the list for it. Might your Dr be willing to check all your inflammation markers?

I'm sure your weather doesn't help either, that does sound uncomfortable.

[Wewo01 in reply to EPguy]

I did have LDH, CRP done. I can’t remember if a sed rate was done. Inflammatory markers were greatly decreased since February. I can only chalk that up to phlebotomies.

[hunter5582]

It is hard to sort out which is which. I did experience the loss of energy as a function of iron deficiency. It is one of the reasons I started PEG. My energy levels restored when my iron levels improved. They continued to improve when I switched to Besremi. I feel much better now than I did a year ago. Note that while Besremi is theoretically easier to tolerate than Pegasys, I did not notice ay difference in AEs.

You could certainly have your iron levels checked (full iron panel) but it will likely just tell you what you already know - you are iron deficient.

I expect the only thing to do at this point is to give it a bit more time and see if you feel better as your iron levels come up. You could certainly try a switch to Besremi if you wish. It might help.

Stay cool!

[Wewo01 in reply to hunter5582]

Thanks so much! I will hang in there!

[Threelions]

I can only let you know my own feelings on this but maybe they’ll help.I’ve been on Peg for getting on 3 years now. The first couple of months (I was 90mg weekly) I felt similar to the way you’ve described.

However, this subsided gradually in time (I guess as my tolerance grew) and now I’m on 45mg once every 3 weeks.

It may be worth sticking with for a bit longer. If it’s doing its job well & your counts are good then tolerance may improve & ,in turn , your fatigue improve also.

I’m sure you’re also focussing on drinking lots of water/squash. I found that I really had to drink loads more than I was previously drinking & that, along with fresh fruit & vegetables, helped massively.

Hope you feel better soon x

[Wewo01 in reply to Threelions]

Thank you! I was having a bit of a pity party for myself.

[EPguy in reply to Threelions]

Did you start to feel better while still on the 90/week, or did you feel better mostly as the dose went lower?

[Wewo01 in reply to EPguy]

I have had 90, 70, 90. Today I will lower to 45. Hoping that makes a difference.

[Cakeface]

I came off HU because I was blaming it for my constant fatigue. I'm now 4 doses in on Peg and although I'm still fatigued, it's not as bad as it was. First 3 jabs though, I was extremely fatigued the day or so after. 4th, not so muchI'd stick with it, it's early days 😊

[Wewo01 in reply to Cakeface]

I will persevere! Thank you.

[gvibes]

I have been on peg for 18 months for PV. Like the others above, side effects like fatigue decreased as your body got used to it, I guess. I also have noticed increase in side effects with the higher doses and then improvement when my dose went down. It seems your body is reacting to peg differently over time as far as bone marrow and blood effects - it takes a year or more to get the desired effect (at least for me). Its hard but try to be patient would be my advice. After treatment for some time, my iron levels were able to recover - no phlebotomies, and maybe that has contributed to feeling better.

Hope you feel better...

[Wewo01]

Thank you for your reply!

[ciye]

My Pegasus journey has come to an end the side effects where too much. the fatigue was awful.

[Wewo01 in reply to ciye]

I’m crossing my fingers that doesn’t happen to me. I will be taking my fourth injection this evening.

[Bobadog]

HelloI’ve been on Peg for 10months,60mg fortnightly.

I still get fatigue but this is really decreasing.

I have phlebotomies every 4weeks to keep my hc >45

They were more frequent pre Peg ,every 3 weeks.

My iron levels have definitely improved which is good.

I hope you manage to persevere with Peg.

Besremi causes some fatigue too I understand.

All the very best

Bobbie

[Wewo01 in reply to Bobadog]

Thank you so much for your reply! I really appreciate you telling me your experience. I’m hanging in there!