Sorry you are going through this time of uncertainty, Lisa. The uncertainty is worse than the diagnosis! Your doctor may want to do a bone biopsy to see if there is any scarring in your bone marrow. That is normal, so don't freak out over it.

I've been on Hydrea for 3 weeks now and had no symptoms. Yesterday, I was so exhausted, I couldn't move out of the recliner chair for 6 hours. I had to will myself into the bedroom. My face became extremely flushed and red on the left side only.

Today, everything feels better and back to normal. Everyone's journey is different, but the best advice I can give you (that was passed along to me on this thread) was to drink tons of water throughout the day AND when you take your Hydrea, put water in your mouth first and then tilt your head back and drop the capsule (directly from the cap - NO TOUCHING) into your mouth and swallow immediately. In this way, the pill won't linger on your tongue for a second or two. It is such a potent pill that holding it in your mouth for a few seconds can cause irritation to your tongue.

Remember, the warning labels on Hydrea are not kidding when they state to not touch the pill and if you do, scrub your hands immediately.

Now, it is important to remember that Hydrea is usually the first line of defense for PV. Sometimes, doctors will choose to put you on Jakafi or another chemo, depending on the severity of the disease OR due to your intolerance of one of the drugs. It's not unusual to be switched around until you find the drug that works for you.

Hydrea, so far, hasn't been bad for me, but it usually takes about 6-8 weeks to determine the fallout for each individual. Also, some people never have any side effects and then they come 6 months later, out of nowhere!

Know that this disease can be effectively treated. You will be on the chemo for the rest of your life, but you will be alive and once you get acclimated to it, can live a normal life. Please get online and look at PV diets. Sugars, additives and other things can make it worse. Adjust your diet accordingly.
Best of luck to you.