Pegasys and insomnia

[EleanorPV]

I’m now on a maintenance dose of pegasys. Started pegasys in 2016. In the Early years within 30mins of injecting I felt very tired and experienced a good deep sleep on my injection nights.

Over the last year - not every time - maybe 50% of the injections I have difficulty sleeping. I feel relaxed but my mind is wide awake. This only seems to Impact injection night.

Anyone share anything about why this may suddenly start? Also any suggestions in relation to how i can improve getting to sleep? I’m at the stage of questioning if I might require medication to help sleep.

[hunter5582]

Insomnia is one of the common side effects related to PEG. It is also associated with MPNs in general. Given the pattern you note, it is pretty reasonable to suppose sleep dysregulation is related to the PEG. This is definitely something to review with your MPN are team.

I experience chronic insomnia. It has been steady and chronic since I was in my 40s. I have tried nearly every sleep aid that is available. Many of them will knock you out but disrupt sleep architecture, not allowing restorative sleep. The only medication that has worked for me is Belsomra, which works in a different way. If you really do need to consider a prescription sleep aid, it is what I would recommend. If you want to consider an OTC Sleep aid, there are quite a few. Many are diphenhydramine based. They help, but should only be used for occasional insomnia.

Hope you find a solution ASAP.

[EleanorPV in reply to hunter5582]

Thanks Hunter. I find the chemical interaction shift interesting. PEG can be both a stimulant and a depressant within the same body but at different time periods.

[NCB1983]

I too experience a patterns of insomnia after my PEG injection. I sleep soundly on the first night but experience a very light sleep for the two days after - literally anything will wake me and then I am wide awake for hours. I have never struggled sleeping so its a little annoying! My Haematology team offerred prescription sleeping tablets but I have declined, preferring off the shelf sleep supplements, which seem to help a little.I hope you find something that works for you

[Solyesh]

I hear you - I have had on and off insomnia issues for decades but they have definitely increased since starting Peg...trying to avoid taking sleep aids (only when absolutely necessary) .....