Pegasys Shortage. Dose Change

[Crossefield]

Hi, I've recently changed from 45mcg weekly to 90mcg fortnightly. Wondering if anyone else is in the same position and if you've experienced any problems? I'm feeling overly tired and achy lately and just generally sluggish and run down. It's likely this just down to normal PV side effects together with a few stressor in life. But it could be a change in Pegasys regime. Yes, I push myself and don't rest enough sometimes. I'm no good at doing nothing sometimes 😊

[gilded]

Hi Crossefield, I’ve been on 90mcg fortnightly ever since diagnosis in late 2021. I have tolerated it well. I do get tired but I attribute this to waking up early to walk my pooch. ( or rather he wakes me up ) I try to keep awake during the day because if I nap I know this will mean that I can’t fall asleep by 11pm as usual. Don’t beat yourself up about feeling tired.

[hunter5582]

Adverse effects are typically dose dependant. It is not surprising that you may experience something different at a less frequent higher dose. This is an issue that you need to review with your MPN care team for the best advice.

Agree about being no good at doing nothing. I am very bad at not being active! I get very bored very easily.

[Franko21]

Hi , I’ve been moved from 90mg fortnightly to 90 mg three weekly because of shortage, not sure how it’s going with my bloods as haven’t had blood test since change which has been 6 weeks . I do not feel any different what does make my cross is now instead of 90 mg syringe it comes in 180 mg syringe such a waste of medication . Hope you get on .

[Leveret20]

I have ET and have had to increase the time interval between larger doses. It has meant that I am see-sawing between the side effects and the withdrawal symptoms and it is most uncomfortable. My body works better straight after an injection, but my brain starts to function better towards the end of the interval.

Luckily I have just been given a prescription for Besremi, which I should be able to take with a stable dose régime, and I am hoping that will be better.

[Threelions in reply to Leveret20]

Like the “body & brain” statement.

Hadn’t thought about it before but - yes - I’m the same 👍

[Crossefield in reply to Leveret20]

Interesting, thank you. I'm only a month in, so 2 or 3 cycles. Probably too early to judge. I'll keep a closer eye and log what's happening. I'm hoping it's down to some very stressful things going in with life in general. I have enough Pegasys to last around six months on bi-weekly (don't ask, I was quite shocked when I received my last prescription). So no Besremi for me.

[light]

Hi, I been on 45mc every four weeks since Covid lockdown lift and now in October I started with 90mc every eight weeks. Now is my second eight weeks. This time I had bad side effects for a week. I don't know about my blood counts yet. It will be evaluated in January 25. They don't have any data for doing this, so I data for now. Will update you all in January. Wishing you well.

[Threelions]

yep, exactly the same change as you due to the shortage.

Haven’t felt massively different from the usual to be honest.

Be interesting to see how our blood performs on the next tests.

[Bridie123]

I have been switched from 45 a week to 90 a fortnight and for the first few months it was fine but the last few weeks I am getting head aches and very sensitive skin.

[Crossefield]

Thanks for all your replies. I'm only a month into the new regime so it's probably too early for anything scientific. But I've had my worst period of scintillating scotoma's since starting aspirin 6yrs ago. Added to this my elderly mother has stage 4 biliary tract cancer and we just put our 15.5yr old Westie down. So it's fair to say the mind and body are somewhat stretched.