Essential Thrombocythemia

[GRATHNOR]

I was diagnosed with essential thrombocythemia 25yr ago. I was put on interferon which worked with no side effects. My oncologist then put me on Hydrea and took me off Interferon about 7 yrs ago. Recently my right foot burst out with painful foot ulcers and what appeared to be skin and ear cancers. I ceased the Hydrea for a month and everything began clearing up. I was then put on a weekly dose of 135mg of Pegysys. After 2 weeks severe pain kicked into my shoulders, wrists and hips where I could no longer function. Bursitis and arthritis were eliminated as the cause. My oncologist halved the dose and to a fortnightly basis. The pain has decreased to a point where I can function again, but there is still low level pain in those areas. Hopefully I can find a treatment that will make me pain free.

Thanks for listening.

[Scottishterrier]

Hi grathnor when I was put on Hu I was also put on a drug called allpruniol because my consultant said sometimes a side effect of hu was gout am lucky never had it as I heard my neighbour had it and said it was very painful I would get it checked out by your GP and see what they say Stay safe

Scottish terrier

[hunter5582]

It sounds like you have been through the adverse effects wringer. Sorry to hear you have had this experience.

Most of us start on 45mcg Pegasys when treating ET or PV. While PEG can be very effective, it can have adverse effects like arthralgia and myalgia. The fact that your symptoms reduced on a lower dose speaks for itself. You may find you need an even lower dose.

Wishing you success moving forward.

[EPguy]

Were you taking interferon 25 years ago? That likely was Roferon or Intron A. It's taken daily or every few days. Why did your Dr take you off if it was working?

Pegasys or the similar Besremi are taken weekly or monthly. It's supposed to have fewer adverse effects than the old IFNs with a more even drug load in the body. If you stay on, trying the lowest dose that holds your PLT counts is a good start. 45mcg is common for many members as Hunter notes.

Beremi is not yet approved for ET, and Pegasys is now in shortage in many places. If you were on the the old type and it was working, could you try it again? Intron A is no longer made, but Roferon is.

[Nerjalover]

is your oncologist an MPN expert? This is so important.

[Hopetohelp]

when I was on Pegasys I had shoulder, neck and back pain for a couple of years. Nothing seemed to get rid of it but when I took a slightly lower dose of peg it went away. Came back when the dose was increased slightly. Didn’t make the connection until I finally stopped peg and pain now gone. I would suggest explaining to your haematologist. Maybe you could let us know how you get on. Good luck

[DiveGoddess]

Thank you for sharing this experience. I have not taken Hydroxurea but was asked to, I declined. I am on Interferon now 2 years. Have more joint pain, did not think about if it could be related. I take 150mcg monthly. Hope your aches and pains improve.