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What precautions have Dr's advised you when taking Hydroxyurea?

Posted by bgerges @bgerges, Sep 13 4:51pm

I have been diagnosed with ET with Jak 2 mutation.. I am not taking HU yet but my oncologist has recommended I start taking it to lower platelet count. I have read that precautions have to be taken with body fluids (bathroom, blood, sweat and sexual.) I was wondering how others who are talking HU are dealing with this and what their Dr has instructed them to do.

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Sandy Morris | @esperanzam | 2 days ago
In reply to @csrb7007 "@petoskeyb As for the mouth and lip ulcers/canker sores, I keep a bottle of prescription Valtrex..." + (show)
Profile picture for csrb7007 @csrb7007

@petoskeyb As for the mouth and lip ulcers/canker sores, I keep a bottle of prescription Valtrex in my medicine cabinet. At the slightest hint of an impending sore, take one and then another 12 hours later. No sore.

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@csrb7007
I also get mouth sores from my maintenance inhalers for my lung problems. So it's hard to tell what is causing what but I find relief with mouthwash made of half peroxide and half water.
Some of my sores are thrush and they say that a strong mouthwash made with salt and water is good. I have useds both with success.

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nypara66 | @nypara66 | 1 day ago
In reply to @marykatherine62 "@janemc I just got my first shingles vaccine yesterday after verifying with the pharmacist thar it's..." + (show)
Profile picture for marykatherine62 @marykatherine62

@janemc
I just got my first shingles vaccine yesterday after verifying with the pharmacist thar it's not live. He said they dont make it live , haven't for years.

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@marykatherine62 They switched in 2020 to a different version that is NOT live. Apparently if anyone inquired at that time, you were told not to take it. The Pharmacist knows more than the Doctors when it comes to meds!

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kc7adk54 | @kc7adk54 | 6 hours ago

I was told I need to take precautions because of the toxicity of the HU. Toilet lid must be down all the way when flushing, flush twice if a low flow toilet, wash hands before and after taking capsule, and if any urine gets on clothing it must be washed separately from other household members. I asked about other bodily fluids - blood, saliva, mucous, poop. Consulting pharmacist had no information on that.
I like the idea of wetting the mouth before taking the capsule and using lip balm to protect the lips. I've only had a couple sores occur in the back corner of my mouth a couple times in past 6 months. I've never had cold sores, but would rarely get canker sores. This Tuesday I begin transitioning from HU to Besremi. I'm worried about side effects, and self-injection. I'm needle averse, can't watch it go in or get pulled out. HU brought my platelet count down from 1007 to 348 in 5 months. Hoping Besremi halts the fibrosis in my bone marrow without impact to other blood components.

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hun8ln2026 | @hun8ln2026 | 1 hour ago
In reply to @kc7adk54 "I was told I need to take precautions because of the toxicity of the HU. Toilet..." + (show)
Profile picture for kc7adk54 @kc7adk54

I was told I need to take precautions because of the toxicity of the HU. Toilet lid must be down all the way when flushing, flush twice if a low flow toilet, wash hands before and after taking capsule, and if any urine gets on clothing it must be washed separately from other household members. I asked about other bodily fluids - blood, saliva, mucous, poop. Consulting pharmacist had no information on that.
I like the idea of wetting the mouth before taking the capsule and using lip balm to protect the lips. I've only had a couple sores occur in the back corner of my mouth a couple times in past 6 months. I've never had cold sores, but would rarely get canker sores. This Tuesday I begin transitioning from HU to Besremi. I'm worried about side effects, and self-injection. I'm needle averse, can't watch it go in or get pulled out. HU brought my platelet count down from 1007 to 348 in 5 months. Hoping Besremi halts the fibrosis in my bone marrow without impact to other blood components.

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@kc7adk54 I am 78, bn taking Hydroxyurea for 3 years platelets never came down count was 686- 715. I have ET Jak2. Went to different Hemotologist/Oncologist last week. He changed my med to Anagrelide. I go back on September 29th to see if this med is bringing platelets down. Was told if it does not that I will have to take the shots. Besremi

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