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.
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.
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 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 worked in the college tutoring center until I retired. Students would come in sick and sit down to discuss papers right next to me. I used sanitizer, washed hands between "customers," printed copies of their paper instead of looking at their work on their laptops and touching their get my laptops. I was sick all the time and retired early, which affected my SS payments.
Last Christmas my husband did a musical program for the preschoolers at the library. He caught the sniffles. He gave it to me and I was sick for 6 weeks with a lingering cough.
I get mild nausea in the evening if I don't drink enough water (64 oz minimum). Water takes care of it. So does eating smaller, more frequent meals thru out the day.
BUT, my hematologist ordered Compazine for nausea when she put me on HU. I only needed it once, but it does help! Call your doc's office and ask about this. My guess is that it will just take a phone call.
Are you taking a high dose of HU four days a week? I have never taken more than one 500 mg tablet, now at four days a week. My last lab was 515. That is great getting to 192 and I hope it stabilizes at that for you. LabCorp says 150-450 is normal.
Congrats! Eileen
Yes, I take 500 mg twice a day, 4 days a week. Started at 500 mg twice a day every day and gradually backed down to current dosage. Other than some short (less than 30 seconds) intense headaches while on the daily regimen,
I have had no side effects.
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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.
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4 ReactionsAlthough 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.
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.
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Hug
3 ReactionsThank you so much for this. I will talk with my doctor.
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1 ReactionI worked in the college tutoring center until I retired. Students would come in sick and sit down to discuss papers right next to me. I used sanitizer, washed hands between "customers," printed copies of their paper instead of looking at their work on their laptops and touching their get my laptops. I was sick all the time and retired early, which affected my SS payments.
Last Christmas my husband did a musical program for the preschoolers at the library. He caught the sniffles. He gave it to me and I was sick for 6 weeks with a lingering cough.
I get mild nausea in the evening if I don't drink enough water (64 oz minimum). Water takes care of it. So does eating smaller, more frequent meals thru out the day.
BUT, my hematologist ordered Compazine for nausea when she put me on HU. I only needed it once, but it does help! Call your doc's office and ask about this. My guess is that it will just take a phone call.
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Hug
5 ReactionsYou take a low-dose aspirin that is coated to protect your stomach, right? Uncoated aspirin could certainly make you feel sick.
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1 ReactionDoes anyone get severe headaches? Im trying to decide if i should see a neurologist or just chalk it up to this disorder
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1 ReactionI take 500 mg 2 times a day . My platelet count was 1100, its now down to the 700s
I get really bad headaches. Is this a side effect
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2 ReactionsOh this headache problem im having is bad. Good to know someone else has it too
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