Essential Thrombocythemia treatment with Besremi

Glad to hear that the Besremi is working for folks! Anyone getting depression as a side effect? This was the major reason that Pegasys, the interferon used before besremi, was not recommended as the first treatment of choice, especially those over 60.

A Patient Power video dropped in my email a couple weeks ago where Dr Verstovsek (MPN expert) said he still sees hydroxyurea as first-line treatment for most people with ET and myelofibrosis.

But the first-line treatment doesn't work for everyone as many here have illustrated. I do appreciate reports from the front lines for those using Besremi.

Is Besremi available in the US, for Medicare patients? I am on HU and thinning hair. I however, have had a total thyroidectomy and also autoimmune rashy forearms. I wonder if I would be a candidate for Besremi? Hate losing my hair!

Glad to hear that the Besremi is working for folks! Anyone getting depression as a side effect? This was the major reason that Pegasys, the interferon used before besremi, was not recommended as the first treatment of choice, especially those over 60.

A Patient Power video dropped in my email a couple weeks ago where Dr Verstovsek (MPN expert) said he still sees hydroxyurea as first-line treatment for most people with ET and myelofibrosis.

But the first-line treatment doesn't work for everyone as many here have illustrated. I do appreciate reports from the front lines for those using Besremi.

I have not had any depression since taking Besremi. Like others, I have some fatigue the 1st couple of days after taking it and have had dry mouth at night since starting the treatment. I also get mouth sores sometimes after taking it but they go away after a couple of days. The side effects are minor and have not caused me to have to modify my days. Wishing you good health.

Thanks. I have had no problems with HU for 6 years, but I may be progressing from ET to MF. Liver numbers are have been high for the past year, but blood cell counts remain stable. So am on wait-and-watch with mild depression and worsening fatigue. I presume depression is situational, not from the chemo. And another damn birthday around the corner. Not handling my 70s very well.

Thanks. I have had no problems with HU for 6 years, but I may be progressing from ET to MF. Liver numbers are have been high for the past year, but blood cell counts remain stable. So am on wait-and-watch with mild depression and worsening fatigue. I presume depression is situational, not from the chemo. And another damn birthday around the corner. Not handling my 70s very well.

I am so sorry to hear this. My prayers are with you and your family. Don't ever give up.

I have my next blood test and hemo appt in November. I need to work up the gumption to do a bit of looking at treatments for MF so I can ask intelligent questions. Fortunately, everything about ET progression goes so slowly that I will have some time to whine and feel sorry for myself before I have to yank my head back in the game. My biggest concern is not progressing to MF per se, but how much more time and money its going to take.

Straight Medicare pays for no prescription drugs. Coverage varies for those with Part D or Advantage plans. A doc may have to explain why he wants you on a drug that costs $$thousands per month vs a generic that retails for around $80. Drug manufacturers may have a program to defray costs based on need, but these have to be renewed periodically, and no guarantee how long they'll continue. The previous admin put a $2K cap on out-of-pocket costs for the elderly, but I don't know if that been rescinded.