Essential Thrombocythemia: Making treatment decisions

My doctor is going to monitor me closely every 2 weeks to start. I hope to see results soon.

For everyone who says they are tired, how are you Ferritin and Iron Panel levels? If these are low you may need to take an iron supplement and that will help with the fatigue. Mine got so low that I was anemic, but before doing anything drastic, they advised me to take a supplement, which I did, and I felt better after a while. My iron level also went up to the point that it was high and I stopped taking the supplement. So I've been good for a while now. Monday is more blood work and a visit with the hematologist so I'll find out where I'm at as far as my iron level.

Hi everyone I just started taking hydroxyurea it’s only been a week. I’m on 500 one per day. I feel a little nauseous but that’s all. I’m confused my Doctor said I have ET but also said I have polycythemia Vera. I have been reading and from what I have read you either have one or the other but not both at the sametime. I’m going to discuss this with him on my next visit. Do any of you have any imput on this?

Hi @blondie65. Blood conditions can get a little confusing. It is possible to have both PV and ET. I recently replied to two other members who share your diagnosis, @rubles and @taisaint.
Here are the links to both similar replies where you’ll find information on the Myeloproliferative Disorder that causes PV and ET.

https://connect.mayoclinic.org/comment/950331/
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These were found in this discussion group:
Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-4/

I hope the information is helpful! Were you having symptoms prior to being diagnosed?

Why did you switch and does it do the same job?

Hydroxyurea caused unusual tiredness and weakness. All I wanted to do was sleep or do nothing at all. I started to gain weight even though I hadn't changed my eating habits and it affected my migraine condition by causing me to develop more headaches.
My doctor then switched me to Pegasys injections, but I developed pruritus which made me feel itchy all over all the time. That's when he put me on Jakafi. It doesn't work the same in everyone, but for me it has the least annoying side effects. Sometimes I feel dizziness and I do bruise easily. Sometimes I do experience a lack of energy, and there are times I have shortness of breath if I exert myself too much. Here is a website to read about Jakafi. https://www.jakafi.com/myelofibrosis/side-effects
Since Jakafi is not a "chemo" drug, I feel better about taking it than the Hydroxyurea.

I'm sorry as I'm new to this site. Are you a mentor? I have many medical problems and so I talk about some of them depending which one is worse that day etc. I don't talk much about then as they overwhelm me and I don't get medical care I need or there's always a problem. I'm not positive about it all to be honest. I hope you feel better and have more good days than sick ones. Thank you for responding . Pamela

Hi Pamela. (@rubles) Yes, I am a mentor primarily in the Blood Cancer and Conditions group, along with Stem Cell/Bone Marrow transplants and a few other groups when needed.
I tagged you in a comment earlier only because a new member asked about having both PV and ET at the same time. I know you’d asked about that same condition a couple months ago so I tagged you in case there was something you could offer from your experience. But there’s no need for you to respond to that message if you don’t feel up to it. There is never any pressure here. ☺️. We’re just like a big ol’ coffee klatch, sitting around the table chatting away.

I’m so sorry to hear that you aren’t getting the medical care you need. No wonder you feel overwhelmed with your health situation. I completely understand how frustrating and disparaging that can be! I also understand that some days just plain stink and it’s tough to remain positive. It may really help to find at least one little thing to look forward to each day. It can be something as simple as having a lovely cup of tea in the morning out of a special tea cup. Or buying a little bouquet of flowers at the grocery store, sitting down to do a favorite craft or artwork. Those little moments can jumpstart us to brighter spirits.

I hope some ‘feel good’ days are ahead of you! I’m here anytime you want to talk. Hugs, Lori.

I have ET/Jak2. Low iron but I am not anemic. The fatigue did not start until I was on HU, 500 mg, 2x week. I also went off of hrt for hot flashes due to concerns about clotting and strokes. I was on hrt for 20 years. Now, on HU, 500 mg, is 3x a week. The hot flashes are hourly and disturb my sleep. I am taking Evening Primrose Oil several times per day for hot flashes, but not seeing improvement. My blood work is better with the HU and iron supplement but the fatigue is interrupting my life.

Thank you for your response. I need to ask if there is help with blood disorders because my doctor does nothing so I assume nothing can be done to help. The thrombocytopenia leaves me with huge bruises on various areas of my body but mostly my legs feet arms and little bruises elsewhere. If you can provide any direction I'd appreciate it. I also wonder if the symptoms I'm having are a result of something else but I'm unable to find out as doctors haven't been helpful. The kidney problems also add to it all. Thank you again, Pamela