Symptom Relief. With HU

[Ridenez]

Hello everyone. Hope all are doing well. I have Pv Jal2+ and just started HU about 3 weeks ago at 1000Mg 7 days a week. My question is anyone getting symptom relief with HU along with generally feeling better? Thank you and best wishes!

[bordeauxgirl]

Same PV +Jak 2 HU dose1000mg 6 days 500mg on a Sunday, as you for 6 years now feel well ,only a bit tired , then an energy boost when I rush a get all my housework done. Doc very pleased with my response and will look at my results in three months time hoping to reduce the doses. Very happy with that thought. Good health to you .

[Ridenez in reply to bordeauxgirl]

Thank you bordeauxgirl.Continued good health to you!

[Mazcd Partner MPNVoice]

hi Ridenez, I have ET and have been taking Hydroxycarbamide since 2008, I take 1 g and 0.5 g on alternate days, I was started on them because the symptoms I had, extreme fatigue, dizziness, head pain, bone pain and confusion, were extremely bad and were affecting my quality of life, the Hydroxycarbamide changed my life, they really do keep these symptoms at bay, I do still get bouts of the symptoms, but not often, so for me the Hydroxycarbamide have made a huge difference. I am aware though that not everyone has the same success, I just hope that they make you feel better.

Best wishes, Maz

[Ridenez in reply to Mazcd]

Thank you Maz for the reply.I am glad the HU is working for you.Continued good health going forward.

[hunter5582]

When I was on HU for PV the last time, it took several months to drop the platelet levels into the high 400-500s range. It never dropped the HCT adequately and I had to go to venesections every three weeks. HU never made any difference in any other symptoms. Ultimately I had to d/c the HU due to adverse effects.

We are all different in how we respond to HU or any other treatment option. As you can see from other responses some people really do see benefits from HU and tolerate it with few adverse effects. I hope that will be the case for you.

Congratulations BTW. You asked the question in the best way possible. Treatment effectiveness for ET is about symptom control, not numbers on a lab. The two things not correlate in a linear fashion.

Hope you meet your treatment goals.

[Ridenez in reply to hunter5582]

Hunter thank you for your reply. I wish they could come up with something that adequately controls the condition and makes you feel better.Good wishes to you.

[hunter5582 in reply to Ridenez]

They are still working on it. Jakafi does work better for some things PV related (e.g. pruritis). HU does work for some people for some things too. PEG-IFN likely has the best long-term outcome for those of us with PV since it can (for some) achieve hematologic and molecular remission (minimum residual disease). Venesections can definitely make you feel better and reduce some symptoms. Aspirin certainly helps with preventing thrombosis. Every single one of those interventions comes with potential adverse effects. We just each have to figure out what works best on a case-by-case basis.

I will make a side note that there are some complementary health approaches that can help with managing MPN related symptoms. I have found several that are very helpful. See attached presentations (Gowin and Fleischman).

mpninfo.org/conferences/202...

[nightshadow]

I have been on HU since early January. I was at 500 mg daily until two weeks ago when it was increased to 1000 daily. At 500 I felt great. I had more energy than I've had for years. But at 1000 I am starting to feel some of the brain fog and constipation associated with it.

[Ridenez in reply to nightshadow]

Night shadow thank you for your reply.Best wishes to you.

[nightshadow in reply to Ridenez]

And after three weeks, the side effects have pretty much disappeared. Best of luck.

[Ridenez in reply to nightshadow]

Thank you. Hope you good progress continues.

[falconered53]

Hi Ridenez. PV Jak2+ on HU for 16 months now, 500 mg/day. Immediate relief of some symptoms, especially fatigue and headaches. Platelets dropped very quickly. Very gradual relief of numbness/pain in feet over the course of a year. Still have that a little. Still have some bone pain and occasional brain fog. My hematocrit came down slowly, I had to continue phlebotomies every 8 weeks for 12 months, then finally got to skip one, needed another in 8 weeks.

I dreaded going on HU but must admit I feel much better with it than I did before.

Good luck with your journey.

[Ridenez in reply to falconered53]

Thank you for your reply.I too am also experiencing feet numbness.I also dreaded going on HU and hope it turns out to be a positive for me.Best wishes in the future,

[hunter5582 in reply to Ridenez]

The feet numbness may or may not respond to the HU. Depends on what the cause is. Things you will hear about from others with PV include: erythromelalgia, peripheral erythema, paresthesia, blood viscosity causing feet to "fall asleep" and peripheral neuropathy. I used to constantly have my feet/legs/arms falling asleep until the erythrocytosis was under control. Phlebotomies took care of that problem nicely (reduced viscosity). If the foot numbness started before the HU than the HU may very well help (reduced viscosity and lower risk of microvascular issues). If the foot numbness started after the HU, let your doc know as peripheral neuropathy is one of the adverse effects of HU (along with peripheral erythema).

It is all rather tricky to figure out. Takes a bit of detective work sometimes. I wish you great success with the HU and hope it results in you meeting your treatment goals. BTW - the venesection are not so bad, but they have their own side effect profile. Something I am dealing with now. No free lunches in the MPN treatment world! I think I would settle for a cheaper lunch sometimes. Maybe a nice Rueben for just $2.50.

All the best my friend.

[Hizak]

When my HU dosage was doubled to 1000 mg 5 days a week the change that I noticed was that my skin stopped itching, haven't had to apply any cream in months. On the downside, increased dosage has led to more bouts of constipation, which I didn't suffer from before. But, all in all, things are much better with the increased dosage, no venesections either.

[Ridenez in reply to Hizak]

Thank you Hizak for you reply. No venesections sound good.I hope that works for me.Best wishes in the future.