Been on Pegasys 135mg for about 3 years..
My bloods are ok, vastly reduced Hydro from 17 pills a week to 3.
Over the last 2 years I have developed a cough, a known side effect of Pegasys and I am getting more and more tired, my sleep pattern is shot, I don't get more tat about 3to4 hours sleep a night...
Am I the only one?
Hi shiftzz. I don't think you're the only one, as I've heard others reporting similar problems. I also have developed a persistent cough while on Pegasys which occurs in the mornings only, and seems to be getting worse (I didn't know it was a known side-effect, so thanks for that information). It's very annoying. I have been on Pegasys about 18 months, but only 45ug every 3 weeks (because of the fatigue side effects) . When I had to stop it for a while, the cough went away, but it came back when I resumed medication. GP has no ideas of anything to relieve it. I am also very, very fatigued, but I do sleep well. I think the fatigue is also a common side effect, as the Haem told me about that before I started on it. Haem suggestion is to get more exercise, and I do find that helps, but I struggle to do it as I don't feel up to it. Such limited hours of sleep would make you very tired. I couldn't survive on such few hours. I'd ask your haem for suggestions, and it must be wearing to have so little sleep all the time. Let us know if you get some solutions. All the best and I hope you feel better soon. PS In case it is of some use to you, here are some links to information on Integrative medicine to address quality of life called the SIMM Study.
Use of integrative medicine may correlate with improved symptoms and quality of life in patients with MPN (mpn-hub.com) By Chris Barton 8 January 2021
Survey of Integrative Medicine in Myeloproliferative Neoplasms (The SIMM Study-2) | Blood | American Society of Hematology (ashpublications.org) Blood, Sept 2018.
Hi I think sleep deprivation is horrendous. I suffer with insomnia now and then but I’m not on pegasys.I’ve found listen to bbc sounds or smooth radio is my solution. I wear head phones whilst my husband sleeps peacefully. Failing that I take a sleeping tablet after a few days.
Good luck
Hi shiftzz, I can recommend passiflora as herbal tea or tablets for increased drowsiness. It sounds like you are on hydroxy as well as peg, if so are you in the UK? My haematologist wouldn't let me do that, saying it would be "complicated", I decided I would check with a pharmacist as they are drug experts. Do you think there's a reaction that's affecting your sleep? It strikes me that half dose of each should give much lower side effects. Best regards Jo
Thanks for the info re cough, I've spoken to my consultant and he isn't aware that Pega can cause a cough. my cough produced a phlem, or is everyone else suffering with a dry cough?
No l get the same amount of sleep and have done for years for me l link it with ET which l believe was undiagnosed for years,lm thinking of changing meds although easier said than done, as age is used as a diagnostic tool,and a blunt one at that in my opinion,its is a real stumbling block to getting the meds you as an individual might respond to.All the best.
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