I'm a 65 yr old woman i've had essential thrombocythrmia with jak2 for about 7 years ... i used to notice my labs kept showing higher and higher platelets but I figured if there was a problem they would tell me. I went to a doctor to get mounjaro ..he took labs and told me that my platelets were 982 and it was dangerous. Since then, after the HORRENDOUS bone marrow biopsy, oncology has put me on 1500 hydroxyurea on mon and fri and 1000 the rest of the week
Only deal with hair thinning, afternoon fatigue, and some nausea but zofran fixes that. My platelets are holding steady at 345 so... fingers crossed it stays that way.
I'm a 65 yr old woman i've had essential thrombocythrmia with jak2 for about 7 years ... i used to notice my labs kept showing higher and higher platelets but I figured if there was a problem they would tell me. I went to a doctor to get mounjaro ..he took labs and told me that my platelets were 982 and it was dangerous. Since then, after the HORRENDOUS bone marrow biopsy, oncology has put me on 1500 hydroxyurea on mon and fri and 1000 the rest of the week
Only deal with hair thinning, afternoon fatigue, and some nausea but zofran fixes that. My platelets are holding steady at 345 so... fingers crossed it stays that way.
@oceanstarr
I am 74 years old, diagnosed with ET with JACK 2 positive.
Had a biopsy last year and currently taking Hydro since January 1st.
My platelets were not too high, around 480, I didn’t want to go on the medication but my hematologist advised me to do it bc of my age to prevent strokes.
I am having rosacea flair ups like never before and fatigue since taking Hydro, just managing the best I can while continuing my normal life!
Wish you the best with your treatment!
@oceanstarr
I am 74 years old, diagnosed with ET with JACK 2 positive.
Had a biopsy last year and currently taking Hydro since January 1st.
My platelets were not too high, around 480, I didn’t want to go on the medication but my hematologist advised me to do it bc of my age to prevent strokes.
I am having rosacea flair ups like never before and fatigue since taking Hydro, just managing the best I can while continuing my normal life!
Wish you the best with your treatment!
@zmg Yes! Rosacea upsets for me, too. I am 71 and on HU x 8 years. My dermatologist said no connection that he knows of, but ET causes excess histamine production, and histamines are a component in rosacea. In addition, hydroxyurea dries skin. I got mine to calm down by avoiding all scented skin products, regular moisturizing, avoiding heat/sun exposure, and taking minocycline twice a day for a couple months. I am not sure the Metrogel really does much, but I still use it.
@zmg Yes! Rosacea upsets for me, too. I am 71 and on HU x 8 years. My dermatologist said no connection that he knows of, but ET causes excess histamine production, and histamines are a component in rosacea. In addition, hydroxyurea dries skin. I got mine to calm down by avoiding all scented skin products, regular moisturizing, avoiding heat/sun exposure, and taking minocycline twice a day for a couple months. I am not sure the Metrogel really does much, but I still use it.
@nohrt4me My dermatologist prescribed Metrogel but when I read up on it the literature said it can increase platelet levels. I don't know to what level but I decided to hold off and discuss it with my Oncologist in March.
@nohrt4me My dermatologist prescribed Metrogel but when I read up on it the literature said it can increase platelet levels. I don't know to what level but I decided to hold off and discuss it with my Oncologist in March.
@scienceteacher Sounds like a good plan. I have been thru a lot of stressful family events, a change in diet, and a number of meds in the 8 years I've been on HU. None of that has ever moved my platelets out of the 400s. However, many people here cite stress, illness, and diet/medication changes as affecting platelets, so never hurts to get professional advice!
I'm 76 and was diagnosed last year with ET JAK2. So far I'm only on 1 baby aspirin per day. My 3 month labs have been 552, 462, 479, 543...due again in April. My doc says a fluctuation is normal. No symptoms or side effects...knock on wood. My best to everyone.
I have had essential thrombocythemia since 2022. My oncologist put me on hydroxyurea 1000 mg a day. I am 79 years old. I of course, have fatigue and deal with that on a daily basis. It is not extreme, but very annoying. My red blood Count has been at 2.6. My oncologist has taken me off of the hydroxyurea because it is bringing down my red blood count and not controlling my platelets enough. He has put me on anagrelide. I have to take this med three times a day. It has caused some digestive and diarrhea problems. At my last blood track, my platelets had come down, and my red blood count has gone up slightly. I would love to hear from some other people that are taking the anagrelide. Thank you so much and I hope to hear from someone
@appraiser1946. I've been on anagrilide for about 14 mos. After many small dose increases, I'm now on 2 mg a day. My platelets now range between 320 and 500, which is a vast improvement from 2.2 million when I was diagnosed. I'm very sensitive to the med with many side effects and have a hard time with dose changes. My hematocrit is on the high side at about 53. It's a balancing act for me between tolerating the med side effects and quality of life. As you mentioned, fatigue is a big one, as well as muscle pain, shortness of breath and heart palpitations. I can't take hydroxyurea as the side effects were severe and I was hospitalized for a month. I think it's a matter of adjusting and accepting that life has changed. Good luck with your side effects and hope they reduce with time.
@appraiser1946. I've been on anagrilide for about 14 mos. After many small dose increases, I'm now on 2 mg a day. My platelets now range between 320 and 500, which is a vast improvement from 2.2 million when I was diagnosed. I'm very sensitive to the med with many side effects and have a hard time with dose changes. My hematocrit is on the high side at about 53. It's a balancing act for me between tolerating the med side effects and quality of life. As you mentioned, fatigue is a big one, as well as muscle pain, shortness of breath and heart palpitations. I can't take hydroxyurea as the side effects were severe and I was hospitalized for a month. I think it's a matter of adjusting and accepting that life has changed. Good luck with your side effects and hope they reduce with time.
Hi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and what’s been working for you to keep your platelet levels in the normal-ish range.
2.2 million was super high! It’s encouraging to see that anagrilide has been working well for you and that you’re not having any of the issues you experienced with the hydroxyurea. Wishing you continued success along your journey. I hope you’ll pop into more conversations!
What led to your diagnosis of essential thrombocythemia? Were you having symptoms previously or was this through routine bloodwork?
I was diagnosed with ET Jak2 in November 2022. I am on 1000mg
Hydroxuria per day, 500 mg did not bring down my platelets. They are
between 400 and 450. I am doing well on Hydroxuria, a couple of times
I had a toothache, my hair is a little thinner now. Could be “old age”.
I am 70 years old, female. A couple of days I got a rash on my ankles and lower legs. After doing some research I started to use Aquaphor. It is helping.
I anybody having the same problem? Any suggestion is really appreciated.
Thank you.
I was diagnosed with ET Jak2 in November 2022. I am on 1000mg
Hydroxuria per day, 500 mg did not bring down my platelets. They are
between 400 and 450. I am doing well on Hydroxuria, a couple of times
I had a toothache, my hair is a little thinner now. Could be “old age”.
I am 70 years old, female. A couple of days I got a rash on my ankles and lower legs. After doing some research I started to use Aquaphor. It is helping.
I anybody having the same problem? Any suggestion is really appreciated.
Thank you.
@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at night. Aquaphor is kind of heavy for me, but whatever works! I use CeraVe, which helps. If my feet are really bugging me, I use Benadryl gel (works better than the hydrocortisone cream for me), and I keep a cool water bottle at the foot of my bed to put my feet on if they get itchy and burning in the night.
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I'm a 65 yr old woman i've had essential thrombocythrmia with jak2 for about 7 years ... i used to notice my labs kept showing higher and higher platelets but I figured if there was a problem they would tell me. I went to a doctor to get mounjaro ..he took labs and told me that my platelets were 982 and it was dangerous. Since then, after the HORRENDOUS bone marrow biopsy, oncology has put me on 1500 hydroxyurea on mon and fri and 1000 the rest of the week
Only deal with hair thinning, afternoon fatigue, and some nausea but zofran fixes that. My platelets are holding steady at 345 so... fingers crossed it stays that way.
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Like -
Helpful -
Hug
14 Reactions@oceanstarr
I am 74 years old, diagnosed with ET with JACK 2 positive.
Had a biopsy last year and currently taking Hydro since January 1st.
My platelets were not too high, around 480, I didn’t want to go on the medication but my hematologist advised me to do it bc of my age to prevent strokes.
I am having rosacea flair ups like never before and fatigue since taking Hydro, just managing the best I can while continuing my normal life!
Wish you the best with your treatment!
-
Like -
Helpful -
Hug
3 Reactions@zmg Yes! Rosacea upsets for me, too. I am 71 and on HU x 8 years. My dermatologist said no connection that he knows of, but ET causes excess histamine production, and histamines are a component in rosacea. In addition, hydroxyurea dries skin. I got mine to calm down by avoiding all scented skin products, regular moisturizing, avoiding heat/sun exposure, and taking minocycline twice a day for a couple months. I am not sure the Metrogel really does much, but I still use it.
-
Like -
Helpful -
Hug
3 Reactions@nohrt4me My dermatologist prescribed Metrogel but when I read up on it the literature said it can increase platelet levels. I don't know to what level but I decided to hold off and discuss it with my Oncologist in March.
@scienceteacher Sounds like a good plan. I have been thru a lot of stressful family events, a change in diet, and a number of meds in the 8 years I've been on HU. None of that has ever moved my platelets out of the 400s. However, many people here cite stress, illness, and diet/medication changes as affecting platelets, so never hurts to get professional advice!
-
Like -
Helpful -
Hug
4 ReactionsI'm 76 and was diagnosed last year with ET JAK2. So far I'm only on 1 baby aspirin per day. My 3 month labs have been 552, 462, 479, 543...due again in April. My doc says a fluctuation is normal. No symptoms or side effects...knock on wood. My best to everyone.
-
Like -
Helpful -
Hug
3 Reactions@appraiser1946. I've been on anagrilide for about 14 mos. After many small dose increases, I'm now on 2 mg a day. My platelets now range between 320 and 500, which is a vast improvement from 2.2 million when I was diagnosed. I'm very sensitive to the med with many side effects and have a hard time with dose changes. My hematocrit is on the high side at about 53. It's a balancing act for me between tolerating the med side effects and quality of life. As you mentioned, fatigue is a big one, as well as muscle pain, shortness of breath and heart palpitations. I can't take hydroxyurea as the side effects were severe and I was hospitalized for a month. I think it's a matter of adjusting and accepting that life has changed. Good luck with your side effects and hope they reduce with time.
-
Like -
Helpful -
Hug
3 ReactionsHi @julmo Welcome to Mayo Connect. Thank you for sharing your story with having ET and what’s been working for you to keep your platelet levels in the normal-ish range.
2.2 million was super high! It’s encouraging to see that anagrilide has been working well for you and that you’re not having any of the issues you experienced with the hydroxyurea. Wishing you continued success along your journey. I hope you’ll pop into more conversations!
What led to your diagnosis of essential thrombocythemia? Were you having symptoms previously or was this through routine bloodwork?
-
Like -
Helpful -
Hug
5 ReactionsI was diagnosed with ET Jak2 in November 2022. I am on 1000mg
Hydroxuria per day, 500 mg did not bring down my platelets. They are
between 400 and 450. I am doing well on Hydroxuria, a couple of times
I had a toothache, my hair is a little thinner now. Could be “old age”.
I am 70 years old, female. A couple of days I got a rash on my ankles and lower legs. After doing some research I started to use Aquaphor. It is helping.
I anybody having the same problem? Any suggestion is really appreciated.
Thank you.
-
Like -
Helpful -
Hug
1 Reaction@ina2022 No rash, but a lot of burning, itching in lower legs and feet, esp at night. Aquaphor is kind of heavy for me, but whatever works! I use CeraVe, which helps. If my feet are really bugging me, I use Benadryl gel (works better than the hydrocortisone cream for me), and I keep a cool water bottle at the foot of my bed to put my feet on if they get itchy and burning in the night.
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Like -
Helpful -
Hug
3 Reactions