Pegasys ( peginterferon alfa -2a)

[Elab]

Hi all,

Hope you are coping well in this hot hot weather. ......and drink loads of water .....and gin and tonic 😂😜.

I need your help pls.

I am ET Jak+ diagnoised in Feb this year, I am 41 years old.

Been on hydro for two months ( my platelets gone down from 1200 to 600). Then my hematolgist decided to stop hydro ( because of my age) and advise me to take just aspirin.

Today I had my hospital check up ( 5 weeks after stopping hydro) and my blood test showed that my platelets gone up to almost 1000 again.

I need to start my pegasys once a week (90 mg) before bed.

I am starting tomorrow evening, couple months ago I have been told that someone at hospital/ clinic will show me how to do the injection ( bit scared of the needles anyway )

Today my hemo told me I need to do it myself or go to my local surgery.luckily good friend of mine is a nurse so she is coming to do it for me for the first time.

Any tips/ advice on how to take it, any side effects etc . Do i need to take any supplements to help me with general well being.

I have been told today no excersising and direct sunlight whiles on Pegasys ?

I understand I can’t run marathons and use thredmill etc but surly light excersising will be beneficial. I was thinking about swimming is that allowed?

And regarding the sun and pegasys? Why not direct sunlight. Ofcourse I always use high factor and won’t be on sun all day.

Would really appreciate your feedback

Many thanks xxxx

[francesb]

Hi, once you've done the first injection you'll find it dead easy. There is either a syringe or pen, both are simple. I do mine at night. If you want you can take a couple of paracetamol with it just in case of side effects which I felt slightly at first but now not at all.

I've never heard of no exercise with Peg and would challenge that. Also the thing about staying out of the sun applies to Hydroxy but again, never heard it applied to Peg, however as you've been on Hydroxy that may be the reason.

Good luck with Pegasys, I hope it works well for you. Best wishes, Frances.

[Paul123456]

The general feeling amongst those of us on Peg is start at as low a dose as possible and slowly build up to the required level. It is important to allow your body time to acclimatise. The flip side is that if you are at risk of a stroke, you need to normalise your bloods asap.

I started 45 mcg every two weeks for a month, then weekly for a month and I’m now at 60 mcg. I began in March and my bloods improved dramatically after about 5 weeks. I’ve had no side effects and it has helped with my mild Pruritus.

I believe the max dose is 180 mcg and it’s the people who start off at this level who suffer worst side effects/discontinuation rates. You should be fine at 90 mcg but if you have a friendly point of contact at the hospital, it might be worth asking if you can start at 45 mcg for first couple of weeks.

Peg pretty simple to use, I take it mid day so can drink a lot of water. And I exercise daily.

There is one camp of Hems who believe taking 45 mcg Peg weekly as early as possible is best way of slowing progression. They believe that this is the optimum treatment plan for ET, PV and early stage MF.

IMO the two big risks with Peg are depression/mood swings and possible risk of autoimmune issues, especially long term/high dose. However the evidence that Interferon does, to some extent, slow progression, is increasing all the time. See the year 2 Trial results for Ropeginterferon v HU re molecular response. And my recent MF Combo post.

Re Peginteferon risks, my view is we only need to get through next few years without stroke or progression and there will new, better drugs. Ropeg could be available next year. RG7388 perhaps a year later and possible game changer (in Phase 2 trials now).

[Jocko]

Hi Elab,

I've been on Peg since Sept 2017. Platelets down from 1250 to 180. So far it's been fine. I take mine on a Monday night after I get back from choir practice. I still cycle to work and have been feeling fine. Never heard about the sunlight thing and yes you should drink plenty of water. The injections are ok, it's only once a week so it's not a big deal you'll soon get used to it. You may get slight side effects which in my case I take a couple of paracetamol and all is ok. I would exercise as normal and see how it goes. Good luck.

[EleanorPV]

Be careful if you need to reduce the dose, before injection. I managed to push too hard and emptied the whole syringe.

My skin is definitely more sensitive to sunlight. Fine with factor 50 on. Sunlight reduces my itch.

[Poppy112]

Hi I have been on pegasys now for 5weeks (PV JAK2 positive) prior to that I was on Hydroxy for 2wks to when I was switched to Roferon Interferon because of my age but had to discontinue due to side effects. Now on pegasys was started on 180 but this was an error and was quickly reduced to 90mcg per week. Although better I was still getting some joint pain on 90 so was reduced down to 45mcg weekly where all side effects have disappeared and counts all normalised. Thought I was never going to feel well again. I have never heard about pegasys and sunlight but had with Hydroxy. As for exercise I run weekly and Walk which all helps with giving me some 'me' time. Good luck and keep us informed.

[Elab]

Hi all, thank you very much for all comments.

I had my first injection yesterday. Felt very tired straight away and bit stiff but no major pain etc....took paracetamol 2 hours before injection.

Slept all night and felt fine this morning....well fine as it could be.....still bit dizzy etc...

I am seeing my haematologist in 4 weeks to check my blood results etc. He did mention about reducing or making dose higher ....it just depends how my platelets react etc.

Regarding excersising and sun .......looked everywhere and didn’t see any restrictions.....so will enjoy the sun a bit with factor 30 for short periods.

Have a lovely weekend everyone

Ela 😬