Interferon for Myeloproliferative Neoplasms: Current and Future Uses - Mayo Clinic

[74westy]

I am currently on Pegasys for PMF as supervised by Dr. Richard Silver. I have 14 weeks of treatment and really don't have any major side effects. I alternate doses of 45/90 mcg and I can feel a bit spacey the day after the higher dose. I am hoping this will reduce my spleen over time. So far It has improved my blood counts and given me more energy. I have no more bone pain, and much improved joint pain. I recommend any patient with early MF of PMF to discuss this treatment with their Dr.

[lov2laf]

mrs lynn, Sounds like shingles, often misdiagnosed. Robert, list owner, mpdsupport

[mrslynn63]

So appreciative of your timely response! I will pass your name to his hematologist. He didn't qualify for any trials I tried, but new medicines are coming every day and I will continue to be hopeful! His spleen did seem to be shrinking and his counts lowering before we had to stop the interferon. Your videos are certainly informative and welcomed to families like mine that are starved for information.

[mrslynn63]

Hydroxurea was taken for years and it just wipes him out. We need to get rash under control and then worry about the myelofibrosis but not having any luck. His spleen is ginormous!! At 70 years old, what options, if any, are there?

[mrslynn63]

My husband had essential thrombocythemia for 30 years and it now looks like myelofibrosis. They prescribed interferon and after 9 weeks of weekly shots he developed a horrific rash over 90% of his body. He takes 60 mg of prednisone daily and 50 mg of benadryl 3 times a day. After 3 weeks his white count is 279 and they tried to take him off of prednisone but as soon as they do the rash flares up. He is miserable and they don't know what to do with him. He is miserable.

[mayoclinic]

@mrslynn63 As with all medications they do not work for everyone, and it sounds as if a difficult allergy to the medication occurred. The rise in the white cell count is likely secondary to the effects of the steroids. If your physicians wished I would be happy to speak with them on the phone to see if I might be able to offer any assistance.