I have ET with JAK 2, diagnosed for a few years now. I take one hydrea 4 times a week with daily baby aspirin. Does anyone struggle with nausea? I feel like I am more susceptible to getting sick, every couple of weeks I'm down with a bug or something and usually lasts a few days. I went to the Doctor and my platelets are in the 500's but my white blood count is up, just above normal. Doctors say everything is fine. I am just totally frustrated and don't know if this is a normal symptom or if I should push my doctors more.
This sounds awful. I'm so sorry. What you're experiencing is NOT "fine."
Are you aware that HU lowers our immune response? Could you be catching bugs in your work place, or other public areas?
I'm really paranoid about germs now. I keep hand sanitizer and in my purse and car. I wear face masks when I'm in crowded places. And I keep current on all the vaccinations that are compatible with taking HU.
HU can also cause a range of GI upsets. Do you take your meds with food? Some people find taking HU at night helps with GI distress.
It's not OK to feel sick all the time. Please bring this up with your doctor.
I have ET with JAK 2, diagnosed for a few years now. I take one hydrea 4 times a week with daily baby aspirin. Does anyone struggle with nausea? I feel like I am more susceptible to getting sick, every couple of weeks I'm down with a bug or something and usually lasts a few days. I went to the Doctor and my platelets are in the 500's but my white blood count is up, just above normal. Doctors say everything is fine. I am just totally frustrated and don't know if this is a normal symptom or if I should push my doctors more.
I take Desloratadine, an antihistamine for the itching and it works great. For dry skin on the feet, I use Urea Cream. I rotate using various creams/lotions for dry skin but always come back to Cetaphil lotion. I take HU, 500 mg 4x week. Dry skin and dry eyes are my main issues. I use Refresh over the counter for my eyes, along with Restasis. Managing okay at age 71. I've been ET/Jak2 for 2 years.
On another thread about itchy skin, our incredible monitor Lori suggested trying Dove for Sensitive Skin and Aveeno Oatmeal Body Wash. Cetaphil products were recommended too.
I take Desloratadine, an antihistamine for the itching and it works great. For dry skin on the feet, I use Urea Cream. I rotate using various creams/lotions for dry skin but always come back to Cetaphil lotion. I take HU, 500 mg 4x week. Dry skin and dry eyes are my main issues. I use Refresh over the counter for my eyes, along with Restasis. Managing okay at age 71. I've been ET/Jak2 for 2 years.
Hi Arlene, I was diagnosed with ET Jak2 Nov. 2022.
I am taking 1000 mg per day at night. I am taking
1 Zyrtec in the morning. No other meds.
I changed my face lotion , body lotion, toilet tissue,
soap, anything what touches my body to parfume free
and alcohol free. Not wearing any make up or Mascara.
I am almost 70 years old, would not help much anyway.
😎😎
I am taking lukewarm showers, not hot snd cover up
when I am outside in the sun. It is working for me.
Hope this will help. Let me know.
I am mostly makeup free, too. I find I can mix a dab of Almay or Neutrogena foundation in with the moisturizer. Evens out the skin tone so I don't frighten small children ...
Thanks for this information. I’m 73 and was diagnosed in August. Just trying to adjust to living with the symptoms. I appreciate learning from others who have this blood disorder.
Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have itchy skin? If so what helps? Drives me crazy in the evening and at bedtime.
Hi Arlene, I was diagnosed with ET Jak2 Nov. 2022.
I am taking 1000 mg per day at night. I am taking
1 Zyrtec in the morning. No other meds.
I changed my face lotion , body lotion, toilet tissue,
soap, anything what touches my body to parfume free
and alcohol free. Not wearing any make up or Mascara.
I am almost 70 years old, would not help much anyway.
😎😎
I am taking lukewarm showers, not hot snd cover up
when I am outside in the sun. It is working for me.
Hope this will help. Let me know.
I have itchy skin on one 500 MG per day. When I was put on two a day on the weekend, it drove me crazy, along with other increased side effects so went back to one a day.
The Cancer Clinic pharmacist told me to take an antihistamine when needed. It does help.
Glad it helped! I hate adding more pills to my daily routine, but that itching can drive you nuts. And, yes, I talk to the doc about OTCs, too. I appreciated people bringing up questions about aspirin recently, which alerted me to ask about NSAIDs
Question, does anyone with essential thrombocythemia JAK2 taking 500 mg of Hydroxurea twice a day have itchy skin? If so what helps? Drives me crazy in the evening and at bedtime.
I have itchy skin on one 500 MG per day. When I was put on two a day on the weekend, it drove me crazy, along with other increased side effects so went back to one a day.
The Cancer Clinic pharmacist told me to take an antihistamine when needed. It does help.
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This sounds awful. I'm so sorry. What you're experiencing is NOT "fine."
Are you aware that HU lowers our immune response? Could you be catching bugs in your work place, or other public areas?
I'm really paranoid about germs now. I keep hand sanitizer and in my purse and car. I wear face masks when I'm in crowded places. And I keep current on all the vaccinations that are compatible with taking HU.
HU can also cause a range of GI upsets. Do you take your meds with food? Some people find taking HU at night helps with GI distress.
It's not OK to feel sick all the time. Please bring this up with your doctor.
-
Like -
Helpful -
Hug
4 ReactionsI have ET with JAK 2, diagnosed for a few years now. I take one hydrea 4 times a week with daily baby aspirin. Does anyone struggle with nausea? I feel like I am more susceptible to getting sick, every couple of weeks I'm down with a bug or something and usually lasts a few days. I went to the Doctor and my platelets are in the 500's but my white blood count is up, just above normal. Doctors say everything is fine. I am just totally frustrated and don't know if this is a normal symptom or if I should push my doctors more.
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Helpful -
Hug
1 ReactionAlthough for the first time in my life I'm having occasional dry eyes, I had failed to connect that to ET!
Thank you for connecting the dots.
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Hug
1 ReactionI take Desloratadine, an antihistamine for the itching and it works great. For dry skin on the feet, I use Urea Cream. I rotate using various creams/lotions for dry skin but always come back to Cetaphil lotion. I take HU, 500 mg 4x week. Dry skin and dry eyes are my main issues. I use Refresh over the counter for my eyes, along with Restasis. Managing okay at age 71. I've been ET/Jak2 for 2 years.
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Like -
Helpful -
Hug
5 ReactionsI am mostly makeup free, too. I find I can mix a dab of Almay or Neutrogena foundation in with the moisturizer. Evens out the skin tone so I don't frighten small children ...
-
Like -
Helpful -
Hug
3 ReactionsThanks for this information. I’m 73 and was diagnosed in August. Just trying to adjust to living with the symptoms. I appreciate learning from others who have this blood disorder.
-
Like -
Helpful -
Hug
2 ReactionsHi Arlene, I was diagnosed with ET Jak2 Nov. 2022.
I am taking 1000 mg per day at night. I am taking
1 Zyrtec in the morning. No other meds.
I changed my face lotion , body lotion, toilet tissue,
soap, anything what touches my body to parfume free
and alcohol free. Not wearing any make up or Mascara.
I am almost 70 years old, would not help much anyway.
😎😎
I am taking lukewarm showers, not hot snd cover up
when I am outside in the sun. It is working for me.
Hope this will help. Let me know.
-
Like -
Helpful -
Hug
5 ReactionsThanks for the suggestion.
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Hug
1 ReactionApparently NSAIDs interfere with aspirin's beneficial effect on our blood.
So taking aspirin and any NSAID at the same time would be counterproductive.
Thank you again for the loratadine suggestion!
I have itchy skin on one 500 MG per day. When I was put on two a day on the weekend, it drove me crazy, along with other increased side effects so went back to one a day.
The Cancer Clinic pharmacist told me to take an antihistamine when needed. It does help.
-
Like -
Helpful -
Hug
2 Reactions