Is it ok to alter Pegasys dosage interval if going on holiday?

[Na56]

I have an appointment at Guy’s in three weeks time to discuss changing from hydroxycarbemide to Pegasys.

I have a few one week holidays booked for this Spring and Summer . I expect if I start Pegasys to start on a dose every two weeks so is ok to adjust the timing to the occasional three week gap to avoid having to take it on holiday? I just wondered if anyone had done that? I am worried about having any side effects while on holiday.

Thank you Irene

[Mazcd Partner MPNVoice]

hi Na56, you will need to discuss this with the team at Guy's. Best wishes, Maz

[Na56 in reply to Mazcd]

Hi Maz Yes I will ask at my appointment. Thank you Irene

[hunter5582]

I would not bother altering the schedule for any holiday. It is very easy to travel with one of the interferons. I do it on a regular basis, including international travel. It has never been a problem.

If you do want to alter your dosing schedule, then you would need to consult with your MPN care team. They can give the best advice.

[Na56 in reply to hunter5582]

Yes I will ask at my next appointment. I am concerned that I might have side effects on my holiday as I will be new to the medication . Thank you for your reply. Kind regards Irene

[Ovidess]

I recently talked to my oncologist about postponing my Besremi interferon injection by 7 days or so in order to take a trip without access to refrigeration. I am 4-5 months into my second round of Besremi and my HCT is controlled, and the platelets down from over a million to 461. He said he was not worried about altering the timing a bit in my case. The recent snow and air travel troubles made me postpone my travel plans but it helps me to know I am not totally chained to the medication schedule.

[Na56 in reply to Ovidess]

That’s interesting. I too hope to not be chained to the schedule. Thanks for your reply. Irene

[kamiilos]

Hi Na56, yes it is very easy to travel with Peg. I transport it in Insulin travel pen. Recently I had 38h travel and when I took it out it was still cold 😉

[sydunipete in reply to kamiilos]

What do you use to keep your org cold for such a duration? Thanks

[kamiilos in reply to sydunipete]

The insulin pens cooler is like a thermos with ice pack in it. It seals very well. I bought one from Amazon.

[Island-Lady in reply to kamiilos]

I looked on Amazon, and they have quite a few. Do you know which one you bought? It seems like such a good idea and it is small so easier to travel with.

[kamiilos in reply to Island-Lady]

4ALLFAMILY Nomad 48H 3 Insulin Pens Cooler Travel CASE Medicine

The one for 3 Insulin pens would fit about 10 Pegasys syringes

[gilded]

Hello Na56. I have adjusted my frequency of Peg interferon in similar circumstances and suffered no adverse effects. Mind you, this is purely personal and it may not work for others.

[Na56 in reply to gilded]

Good to hear it might be possible to alter the dosage interval. Thanks for letting me know. Irene

[ainslie]

my experience and those of others is never change anything meds wise before or during a holiday or travel, that way no potential nasty surprises when you are away from your regular medical team etc

[Na56 in reply to ainslie]

A valid point. Thanks for your reply Irene

[Minify]

if you are just starting peg on low dose, the peg might not be working by the time you travel. If you stopped the Hydroxy, there is a period of time that your counts will rise until the peg takes effect. For many, it takes time for your body to adjust to Peg and the dose is increased until you respond. For me, it took 7 months of the low-slow approach before it started working at a dose of 180/week.

The low-slow approach allows your body to adjust slowly to the Peg and minimize side effects. But at the start, you don’t know what dose you are going yo end up on.

[Na56 in reply to Minify]

Thank you for this information. Do you have any side effects on the 180 dose ? Kind regards Irene

[Minify in reply to Na56]

I have no had side effects from the interferon other than one brief rise in liver enzymes right after a dose increase from 67.5 to 90. The liver enzymes went down quickly with no intervention. My counts are now controlled and I feel well on the Pegasys. (Better than Hydroxyurea ). I think the low-slow approach let my body adjust slowly. My dose increments were : 45 every other week, 45/week, 67.5/wk, 90/wk, 135/wk, 153/wk, and finally 180/week. It took 7 months before I responded, and during that time my counts slowly rose to pre-treatment levels because I stopped HU when I started Pegasys.

I may start titrating down to see if I can maintain on a lower dose.

[Na56 in reply to Minify]

Thank you for your reply. All the best Irene

[Jamesxyz in reply to Minify]

Hi,

Wow you are doing great on peg.

Just curious do you drink alcohol at all?

Thanks

[Minify]

I drink alcohol rarely - wine, maybe once/month