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Medication for JAK2

Posted by ajordan1982 @ajordan1982, Mar 28, 2019

I just got back from my blood doctor appt and i advised her that I cannot keep going every month to have a pint of blood taken to reduce my levels… We discussed medication but she is concerned because i am only 36. I have MS along with JAK2 and so being on one of the medications will increase leukemia and the other she is not sure what it will do to me.
What is everyone on for medication and how does it effect you? I know everyone is different but Thank you in advance!

Justin McClanahan | @JustinMcClanahan | Mar 29, 2019

Hello @ajordan1982, if you are comfortable sharing, what medications were discussed by your physician? It may help other members share their experience if they know which medication you are wondering about. You also had posted to this discussion in the past as well where many other members have discussed JAK2 mutation and effects, https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/.

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ajordan1982 | @ajordan1982 | Mar 29, 2019

Jakafi and the other medicine i don’t remember the name

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Justin McClanahan | @JustinMcClanahan | Mar 29, 2019

I would like to invite @gael, @wellness3070, @jfinlay, @djr, and @bijou have all discussed taking jakafi in the past and may be able to offer some insight in to their experience on this drug.

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mjpm2406 | @mjpm2406 | May 31, 2019

I have MDS/MPN overlap with Thrombocytosis. Tested positive for the JAK2 and SRSF2 gene mutations. For me, the JAK2 mutation causes a high platelet count. I was put on Hydroxyurea and my platelet count dropped from 847,000 to 224,000 within 4 months. The doctors at Sloan have not started any treating for the MDS issue as they were concerned about the high platelet count which was my worst symptom. My treatment plan going forward is rather simple. Stay on the Hydroxyurea until my overlap disease mutates. If it does then there is a possibility of some other wonder drug or a SCT depending on how the disease mutates. For now, I seem to be OK because the Hydroxyurea seems to be doing it's thing.

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1 reply
claire39 | @claire39 | Jun 18, 2019
In reply to @mjpm2406 "I have MDS/MPN overlap with Thrombocytosis. Tested positive for the JAK2 and SRSF2 gene mutations. For..." + (show)
@mjpm2406

I have MDS/MPN overlap with Thrombocytosis. Tested positive for the JAK2 and SRSF2 gene mutations. For me, the JAK2 mutation causes a high platelet count. I was put on Hydroxyurea and my platelet count dropped from 847,000 to 224,000 within 4 months. The doctors at Sloan have not started any treating for the MDS issue as they were concerned about the high platelet count which was my worst symptom. My treatment plan going forward is rather simple. Stay on the Hydroxyurea until my overlap disease mutates. If it does then there is a possibility of some other wonder drug or a SCT depending on how the disease mutates. For now, I seem to be OK because the Hydroxyurea seems to be doing it's thing.

Jump to this post

Hi…my name is Claire and I have jak2 mutant. Diagnosed in November 1918 and was given the medication hydroxyurea 500mg five days a week. The weakness and fatigue has greatly improved but still remain. Some days I have to mostly stay in bed because my body is so weak. For the most part I think I am doing well but I wonder if anyone else out there still has chronic weakness. Also does anyone have an occasional itch with blisters on scalp. Thank you for any information You may have

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1 reply
claire39 | @claire39 | Jun 18, 2019

hi and thank you for responding. I am sorry you are going through two separate issues and I wish you well. Do you experience any itchiness……claire

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mjpm2406 | @mjpm2406 | Jun 19, 2019

I have MDS/MPN with Thrombocytosis. Also JAK2 and SRSF2 positive. I take Hydroxyurea to reduce my platelet count. Hydroxyurea is a low dose daily chemo pill. So far it's working as planned as my platelet count is now in the normal range. Good luck.

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1 reply
claire39 | @claire39 | Jun 19, 2019
In reply to @mjpm2406 "I have MDS/MPN with Thrombocytosis. Also JAK2 and SRSF2 positive. I take Hydroxyurea to reduce my..." + (show)
@mjpm2406

I have MDS/MPN with Thrombocytosis. Also JAK2 and SRSF2 positive. I take Hydroxyurea to reduce my platelet count. Hydroxyurea is a low dose daily chemo pill. So far it's working as planned as my platelet count is now in the normal range. Good luck.

Jump to this post

Thank you also. Please let me know if you experience any itchiness or weakness

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1 reply
mjpm2406 | @mjpm2406 | Jun 21, 2019
In reply to @claire39 "Thank you also. Please let me know if you experience any itchiness or weakness" + (show)
@claire39

Thank you also. Please let me know if you experience any itchiness or weakness

Jump to this post

No itchiness or weakness. I do get an upset stomach after taking the Hydroxyurea pill but that only lasts for 30 minutes or so.

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claire39 | @claire39 | Jun 26, 2019
In reply to @claire39 "Hi...my name is Claire and I have jak2 mutant. Diagnosed in November 1918 and was given..." + (show)
@claire39

Hi…my name is Claire and I have jak2 mutant. Diagnosed in November 1918 and was given the medication hydroxyurea 500mg five days a week. The weakness and fatigue has greatly improved but still remain. Some days I have to mostly stay in bed because my body is so weak. For the most part I think I am doing well but I wonder if anyone else out there still has chronic weakness. Also does anyone have an occasional itch with blisters on scalp. Thank you for any information You may have

Jump to this post

Sorry about the date, it should be 2018

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