Interferon

[faith949]

My hematologist decided to try interferon. Starting it soon kind of scared cause I heard it causes depression and anxiety, also flu like symptoms. Anyone else experienced anything like that while on interferon?

[harleydavidson]

Hi faith949. I was on interferon for a year without any problems and it sorted my counts very well, so much so that I no longer needed anything other than aspirin for 2 years. Now on hydroxe, also working well. Not needed a venesection for over a year. I wish you well and hope you are fine with the interferon. The fear of the unknown is normally the worst part. Mel x

[Jocko]

Hi,I've been taking Peg for 4 years, I've had no issues. It's been great. All drugs have potential side effects - they do not effect everyone the same. The only way you will know is to try it.

Good luck

Jocko

[MPort]

Hi Faith, I am on interferon for about 13 years. At that time I had to work hard to get on it but I had researched it as the best option for me. I have never changed from that opinion and i was so grateful to get it. So that has been my dominant thought and feeling. It hasn't always been a smooth ride but it has kept my aggressive PV under control. I don't think depression has been a major factor, I still react with minor flu symptoms after injection and the major fatigue I had in the first years may have been the PV and not the interferon. It did however take quite a while for the interferon to stabilise my red blood count and I had to have irregular venesections to lower it. I have never regretted being on it rather I see it as a life saver and enhancer. I hope this helps you. Mairead

[hunter5582]

All of the medications used to treat MPNs have a risk/benefit profile. As I recall, your platelet levels are well over 1 million. You may well be symptomatic and/or at risk. I do believe that you are well under age 60, so one of the interferons would likely be preferable to hydroxyurea - especially when you are of child-bearing years.

You did not mention which interferon the doc is recommending, but presumably it would be Pegasys here in the USA. PEGylated interferon is better tolerated than the older forms, but does have a risk of some side effects. While depression is not common, it can occur. The flu-like symptoms can occur around the time of the injection. Typically people can handle these side effects and they are preferable to the kinds of symptoms the MPN can cause.

For what it is worth, I would prefer PEGylated interferon to the other options for ET. When I need to resume medication to treat my PV, it is at the top of the list for what I will use. I am hoping the Besremi will be approved here in the USA soon. the newer form (ropegylated interferon) has been shown to be much easier to tolerate/fewer side effects.

Wishing you all the best as you enter this next stage of your MPN journey.

[Vicki_02]

I got flu like symptoms with roferon but not Pegasys. I prefer to take it in the evening and then hopefully sleep off anything. I think that it maybe enhanced my post-natal depression, I’d sort of been coping until my dose got pretty high (220mg weekly) but I got some help took some meds and was off them again in less the year. Still on Pegasys but only 45mg every two weeks now and am doing really well, counts are all good, feeling really well physically and mentally - in spite of this global pandemic! Good luck, I really hope it works for you.

[BeckyDing]

Hi Are you starting pegulated interferon? If so the side effects are definitely more tolerable. I have had both and currently on the pegulated version. I felt a bit tired with body aches when first started but after 2-4 weeks hardly noticed any side effects. I do suffer from anxiety but did before I started this treatment and use exercise and meditation to help with that - my anxiety is worse at certain times in my cycle but I have not felt the interferon had made this worse but with keeping an eye on. I was really nervous about injecting myself but as it’s only once a week and I have been through on this for a number of weeks I feel a bit like brushing my teeth with it these days if that makes sense.

Happy to chat further and share my experience. You are bound to feel scared as any long term medication you are put on can have side effects and a big change in your life. Take care Becky x