Delayed Peg side effects

[Bobadog]

Hi,

I just curious if anyone else is experiencing delayed side effects from Peg:nausea,dizziness,headaches .

Apart from fatigue/mild flu like symptoms I have been fine since I started the Peg(45mg weekly since 25/10/21) ), until the last dose .

The nausea is really affecting daily life .

(4th booster was 5 days ago)

Thanks

Bobbie

[Ellipops]

Hi. I took Peg from June 20 (45 every 2 weeks). For 7-8 months I tolerated the drug well. However I then started to get extreme dizziness, mood changes and felt very anxious. On seeing my MPN specialist she advised me that in her experience most people who stopped peg did so after 9-12 months, because side effects started after several months of use and eventually became unbearable. I changed to HU, which I had originally been loathed to take. Thankfully the dizziness stopped and my personality returned to normal (I had never had any history of depression/mental health issues). I was very disappointed at having to stop peg as the long term results of the drug appear to be very good, but, I couldn’t carry on with the side effects. I hope things settled down for you and you feel better soon.

[Bobadog in reply to Ellipops]

Hi Ellipops,Many thanks.It’s interesting to hear your Peg side effects.My ‘nausea’ is similar to travel sickness ie dizziness etc.May I ask if your MPN team is in the UK?(I go to Guy’s,London)

I’ll see how I get on in the next couple of months.I’m hoping it may be a virus,but I’m not so sure.

I’m really pleased that HU is working for you .People’s reactions do differ.

All the very best with your treatment,

Bobbie

[Ellipops in reply to Bobadog]

Hi. Initial diagnosis by team at Leicester Royal infirmary and started on Peg. We moved to south west France in August 2020 (move already started before diagnosis). Since then have been under the care of team at Oncopole in Toulouse ( major cancer hospital/research centre in France). Best wishes and good health. Lyndon

[hunter5582]

All that you list are potential adverse effects from Pegasys. Do be sure to review with a MPN Specialist. It may be that you would tolerate Besremi better. Not sure what the approval process is though. It costs a lot more so I am sure there are extra steps. sps.nhs.uk/medicines/ropegi...

Hope you get it all sorted out.

[Bobadog in reply to hunter5582]

Hi HunterThank you so much for the link

.It is available ,but very difficult to access on the NHS presently.

I shall monitor the side effects and ask my haematologist at the next review,

Thankyou again.

All the very best with your Besremi medication,

Bobbie

[Daisyplus4 in reply to hunter5582]

Greetings and gratitude to you all at Health Unlocked, from California. Your posts are informative and courageous. I especially appreciate the clarity of writers such as hunter, who must spend hours reasearching, not only for himself, but also for others. Rigorous thinking and compassion from you all are strengthening to me. Newly diagnosed with PV, I reluctantly, finally began Hydrea with monthly phlebotomies. So far all is well, and I am continuing teaching and gardening, vigorous walking and socializing.

Thank you all so much. Everyone of you is an inspiration.

[Bobadog in reply to Daisyplus4]

Hi Daisy,This is a very encouraging post .

Many thanks and keep up the walking.I do agree that we are all blessed with this site ,and the intelligent ,well researched posts .

Thankyou to you all ,

Bobbie