Feeling better with medication

I was very scared to take it and I did not for a very long time…..then my count went up to over 1 million and the doctor said I could have a stroke any time. I will be 80 this year and I did not want to put that burden on my husband. I have been on it for several months…500 mg a day and the only side effect I have is tiredness but I still work part time and I do feel better especially mentally.

I did feel better. Less fatigue, more energy. Fewer migraines with less intensity.

If you are terrified of the meds, however, I expect anxiety would cancel out any benefits.

IMO, there is entirely too much fear-mongering about HU in cancer groups. Often these fears are promulgated by people who have never taken HU, just read things on Google, saw "chemotherapy," and freaked out.

I'm 72, have had ET x 18 years, and I blame oncologists mostly; people would not be Googling HU if clinics went over med options, possible initial side effects, and remedies for those effects. If you have acute cancer, there's an army of people to provide info and support. Get chronic cancer, and you're in a huge information desert for life.

Are there people on here who can't take HU despite being properly dosed (start on one cap per day or every other day and work up to the lowest effective dose over a year or two)? Yes, of course. Just as ET hits us all differently, so do the meds.

But you won't know how you will feel on HU until you try it--like any other med. As far as I know, nothing about HU is irreversible if you take it for a time and find you can't tolerate it. And trying HU is often required before insurance will pony up for more expensive alternatives like Besremi or Jakafi. (Those have side effects, too.)

I'm 79 and have been on HU since March. My hematologist started out slowly with a 500mg 3 days a week. The platelets started to come down slowly. In these forums others have said to drink 64 oz. of water daily. I try to get close to that amount and I take the HU after eating lunch. Each time I take HU I thank it for the positive effects it is having in my body. This also helps remove the fear. It really helped me to concentrate on the positive things the pill will do instead of possible side effects. I have had no side effects and in these forums you can read about people who have taken HU for may years with no side effects. Best wishes.

@dharte47
64 oz fluid intake is a general guidance. If you halve your weight, you will come closer to your actual daily need. Another thing to keep in mind is that all fluids count toward your daily intake, not just water. Even caffeinated coffee and teas count in moderation, as do juices, soups and other liquids in meals. Of course it's important to maintain a healthy diet too and watch sugar and salt intake. Keep in mind though that some meds may require more water because of the way they work and it's important to stay hydrated at all times, especially when outside in summer heat.

@kjoed53 Sugar and carbs are also energy killers for me. Age or ET? Not sure.

I feel better too. At first I would be tired the day after taking HU but I’ve adjusted. I used to get bad pains in my head now I don’t.
I was freaked out when I read about HU but for me it has helped platelets go down my other counts are currently in line with norms and it is affordable so I’m glad I’m on it.

@nohrt4me
It seems like every month there's results from studies showing the dangers of sugar substitutes. I know personally that I don't care for the taste of any of the sugar substitutes and most increase my heart rate. I use sugar and salt sparingly and I enjoy my weekly pasta meal. Moderation is the key for me. At 73 I don't want to eliminate the foods that I enjoy in moderation. I'm sure it's frustrating when foods don't agree with you. For all practical purposes I have eliminated pork and shellfish from my diet because they affect my digestion. When food affects how we feel it doesn't much matter why, it's enough to know that it does. Enjoy what you can and thanks for sharing.

ladyelisa, I started on HU in 2023. Even before it started bringing down my platelet count, it relieved my blinding ET headaches, and gave me my energy back.

Sure, I hated taking that first capsule. But I quickly became very thankful that I had an inexpensive, effective treatment for my ET.

I take a LOT of HU: 7,500mg/week. My only side effects are dry skin and constipation, both addressed by drinking more water.

As nohrt4me says, you'll never know until you give HU a try.

@janemc
I really appreciate your response as well as others. Usually I just hear about dreadful side effects. And doctors say HU doesn’t reduce chance of strokes. So I’ve wondered why I would take it. I will give it a try now.

I appreciate all these responses. I’ve decided to see an MPN specialist and have a referral. I suffer from strange diffuse body pain all over. The areas that hurts due to other things, such as fingers with osteoarthritis, back pain from osteoporosis, and stomach pain, all are magnified when I feel this pain. I think it’s from my blood disorder/cancer. I will get the bone marrow biopsy, which I have been refusing too. Thank you all. It really helped me decide.