Were you taking Droxia, the name brand, or the generic HU? Congrats on your determined efforts that obviously paid off. It's not enough that we have this condition, but when we have to "prove" the horrible effects that we live with before a doctor believes our situation, that is unacceptable. Think of those who are not a brave as you and accept the effects of the drug because the doctor did not acknowledge the problem. There should be some type of response available to this type of situation. However, right now, the only option is to find another Hematologist. Again, you did well, I hope you find the answers, if not try to look elsewhere.
Best of luck to you!
@janemc I had what I think was an extreme autoimmune reaction (joint / tendon pain and stiffness, muscle weakness, including difficulty swallowing and severe swelling with red sores on ankles) after taking HU for 1 month. My hematologist said he didn’t think it was possible that my symptoms were caused by HU, but by another medication. I stopped both for a few weeks, but restarted HU after my platelet count doubled. I then had a similar reaction just a few hours after taking the second daily dose. I saw him a few days ago for a follow up, and he finally said he was going to believe me! So big of him! But at least I don’t have to continue looking a second opinion. Now he is hopefully going to work with my rheumatologist to come up with a treatment plan. They are considering Jakafi, but will probably have to try anagrelide first.
@lisanell I’ve been taking HU for 10 years (1000 to 1500mg daily) and it definitely caused redness around the ankles as well as ankle ulcers if my dosage went over 1500mg. Even under 1500mg I had to be very careful about scraping my ankles. These ankle wounds would take a while to heal and would require careful attention. Trust me these symptoms are HU related. I’ve been off HU for 8 weeks and my ankles are no longer red and an ankle ulcers I got cleared up quickly.
I feel your pain. While starting my journey saw the Dr every week for maybe a month. after starting HU I have not seen her since the June 1st will see her at my next appointment on November 19th. How can you tell them anything . The first symptom I had was pain and burning in my calf.the Dr told me it was something that happened to old people. From then on this web site is my go to . I have had leg and hip pain and one pre cancer removed on my nose. This mess is scary . My last blood work my platelets were 297 which I think should help me get a reduced dose as I still take 500 mg 7 days a week.
I was dx almost two yrs ago and was put on HU which I stayed on for a year and could not handle it. I was sick and had extreme fatigue all the time, my Dr would not listen to any of my concerns and kept saying I had to stay on it for life. He had no bedside manner or sympathy at all. I would cry all the way home after appts or I would be so mad. My PCP gave me a name of a different hemo/oncologist. I went off the HU on my own a month before my new appt and when seen my new Dr my platelets were normal and have still been since March 2025. I asked my Dr if maybe there was a mistake and I don't have Jak2 or even this disease but he said no mistake your tests were positive for JAk2. I have been handeling it naturally with a baby aspirin, green tea every morning as well as 100 percent Welch's juice every morning 100 percent cranberry juice mixed in carb water couple times a week. I read the tea and juices are known to bring platelets down and keep them from being sticky plus a few squares of dark chocolate 72 percent and up works the same way. So far so good for now and it has been 8 most since being off HU. My Dr said we will wait and watch for now w/o going on a new med because he knows from me and records from other Dr how bad HU was for me. I was on 5 pills a week at first then 4 then 3 then 2 all the way down to one a week and I was sick all the time and could not handle it. I hope and pray everyday that my platelets keep hanging in there in the normal zone for a long while by doing my daily routine. I hope all goes well for you and you have an easy time with HU if that's what you go on. Take care!! Janet
Each of us must make our own treatment decisions, and find what works for us personally.
In my opinion, it's important to remember that ET's triggered by a mutation in one of the three proteins that control blood cell production. (Apologies to my TPN cousins!)
While choosing a healthy diet is very important, nothing we eat or drink can overcome that mutation.
HU isn't tolerated by everyone. For me, it brings down my platelet count, lessens the headaches and fatigue that are symptoms of ET, and safeguards my blood marrow.
Do I want to be on a medication forever? Of course not!
But for HU restoring my energy and my hope for the future -- I'm thankful.
I was dx almost two yrs ago and was put on HU which I stayed on for a year and could not handle it. I was sick and had extreme fatigue all the time, my Dr would not listen to any of my concerns and kept saying I had to stay on it for life. He had no bedside manner or sympathy at all. I would cry all the way home after appts or I would be so mad. My PCP gave me a name of a different hemo/oncologist. I went off the HU on my own a month before my new appt and when seen my new Dr my platelets were normal and have still been since March 2025. I asked my Dr if maybe there was a mistake and I don't have Jak2 or even this disease but he said no mistake your tests were positive for JAk2. I have been handeling it naturally with a baby aspirin, green tea every morning as well as 100 percent Welch's juice every morning 100 percent cranberry juice mixed in carb water couple times a week. I read the tea and juices are known to bring platelets down and keep them from being sticky plus a few squares of dark chocolate 72 percent and up works the same way. So far so good for now and it has been 8 most since being off HU. My Dr said we will wait and watch for now w/o going on a new med because he knows from me and records from other Dr how bad HU was for me. I was on 5 pills a week at first then 4 then 3 then 2 all the way down to one a week and I was sick all the time and could not handle it. I hope and pray everyday that my platelets keep hanging in there in the normal zone for a long while by doing my daily routine. I hope all goes well for you and you have an easy time with HU if that's what you go on. Take care!! Janet
@janeto1357
Hi, I was diagnosed in May 2024with ET and JAK2. My plateletts were initially 554, then 465 now 479 (testing every 3 months). I'm only on a baby aspirin and don't do anything different with my diet. Have you noticed a difference drinking for juices that you do?
Hi.
Yes I noticed a total difference, my platelets are always in the 300's now or 407 all within normal range.
I never miss the qtr glass of Welches grape juice or green tea every morning, then maybe 1-2 times a week the cranberry juice in carb water. It's also nice to know you can do dark chocolate that also protects the hearts arteries. I see my Dr in a couple weeks which is every 3 most also and I pray each visit as I'm sitting there that my results are going to be good and so far they are now. Give it a try it can't hurt you just make sure the juices are 100 percent juice. The Welch's I also get no sugar added. Good luck! Janet
Hi.
Yes I noticed a total difference, my platelets are always in the 300's now or 407 all within normal range.
I never miss the qtr glass of Welches grape juice or green tea every morning, then maybe 1-2 times a week the cranberry juice in carb water. It's also nice to know you can do dark chocolate that also protects the hearts arteries. I see my Dr in a couple weeks which is every 3 most also and I pray each visit as I'm sitting there that my results are going to be good and so far they are now. Give it a try it can't hurt you just make sure the juices are 100 percent juice. The Welch's I also get no sugar added. Good luck! Janet
Carbonation water water or sparkling water. It has nothing to do with anything except I like it for the cranberry because that juice is so tart and the water makes it more refreshing to drink. Janet
Each of us must make our own treatment decisions, and find what works for us personally.
In my opinion, it's important to remember that ET's triggered by a mutation in one of the three proteins that control blood cell production. (Apologies to my TPN cousins!)
While choosing a healthy diet is very important, nothing we eat or drink can overcome that mutation.
HU isn't tolerated by everyone. For me, it brings down my platelet count, lessens the headaches and fatigue that are symptoms of ET, and safeguards my blood marrow.
Do I want to be on a medication forever? Of course not!
But for HU restoring my energy and my hope for the future -- I'm thankful.
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@maryandbud I was taking generic HU. Thanks for your response and encouragement.
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3 Reactions@lisanell I’ve been taking HU for 10 years (1000 to 1500mg daily) and it definitely caused redness around the ankles as well as ankle ulcers if my dosage went over 1500mg. Even under 1500mg I had to be very careful about scraping my ankles. These ankle wounds would take a while to heal and would require careful attention. Trust me these symptoms are HU related. I’ve been off HU for 8 weeks and my ankles are no longer red and an ankle ulcers I got cleared up quickly.
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Like -
Helpful -
Hug
3 ReactionsI feel your pain. While starting my journey saw the Dr every week for maybe a month. after starting HU I have not seen her since the June 1st will see her at my next appointment on November 19th. How can you tell them anything . The first symptom I had was pain and burning in my calf.the Dr told me it was something that happened to old people. From then on this web site is my go to . I have had leg and hip pain and one pre cancer removed on my nose. This mess is scary . My last blood work my platelets were 297 which I think should help me get a reduced dose as I still take 500 mg 7 days a week.
Have a Blessed Thanksgiving
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4 ReactionsI was dx almost two yrs ago and was put on HU which I stayed on for a year and could not handle it. I was sick and had extreme fatigue all the time, my Dr would not listen to any of my concerns and kept saying I had to stay on it for life. He had no bedside manner or sympathy at all. I would cry all the way home after appts or I would be so mad. My PCP gave me a name of a different hemo/oncologist. I went off the HU on my own a month before my new appt and when seen my new Dr my platelets were normal and have still been since March 2025. I asked my Dr if maybe there was a mistake and I don't have Jak2 or even this disease but he said no mistake your tests were positive for JAk2. I have been handeling it naturally with a baby aspirin, green tea every morning as well as 100 percent Welch's juice every morning 100 percent cranberry juice mixed in carb water couple times a week. I read the tea and juices are known to bring platelets down and keep them from being sticky plus a few squares of dark chocolate 72 percent and up works the same way. So far so good for now and it has been 8 most since being off HU. My Dr said we will wait and watch for now w/o going on a new med because he knows from me and records from other Dr how bad HU was for me. I was on 5 pills a week at first then 4 then 3 then 2 all the way down to one a week and I was sick all the time and could not handle it. I hope and pray everyday that my platelets keep hanging in there in the normal zone for a long while by doing my daily routine. I hope all goes well for you and you have an easy time with HU if that's what you go on. Take care!! Janet
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Like -
Helpful -
Hug
4 ReactionsEach of us must make our own treatment decisions, and find what works for us personally.
In my opinion, it's important to remember that ET's triggered by a mutation in one of the three proteins that control blood cell production. (Apologies to my TPN cousins!)
While choosing a healthy diet is very important, nothing we eat or drink can overcome that mutation.
HU isn't tolerated by everyone. For me, it brings down my platelet count, lessens the headaches and fatigue that are symptoms of ET, and safeguards my blood marrow.
Do I want to be on a medication forever? Of course not!
But for HU restoring my energy and my hope for the future -- I'm thankful.
-
Like -
Helpful -
Hug
5 Reactions@janeto1357
Hi, I was diagnosed in May 2024with ET and JAK2. My plateletts were initially 554, then 465 now 479 (testing every 3 months). I'm only on a baby aspirin and don't do anything different with my diet. Have you noticed a difference drinking for juices that you do?
-
Like -
Helpful -
Hug
3 ReactionsHi.
Yes I noticed a total difference, my platelets are always in the 300's now or 407 all within normal range.
I never miss the qtr glass of Welches grape juice or green tea every morning, then maybe 1-2 times a week the cranberry juice in carb water. It's also nice to know you can do dark chocolate that also protects the hearts arteries. I see my Dr in a couple weeks which is every 3 most also and I pray each visit as I'm sitting there that my results are going to be good and so far they are now. Give it a try it can't hurt you just make sure the juices are 100 percent juice. The Welch's I also get no sugar added. Good luck! Janet
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Helpful -
Hug
1 Reaction@janeto1357 What is carb water?
Carbonation water water or sparkling water. It has nothing to do with anything except I like it for the cranberry because that juice is so tart and the water makes it more refreshing to drink. Janet
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1 Reaction@janemc
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