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JAK2 Mutation - Effects and Questions
Blood Cancers & Disorders | Last Active: Jun 19 5:59am | Replies (303)Comment receiving replies
Hi, I am back on this site for more information. I initially got off it as I wasn't sure how secure the site is. Anyway I have been on Hydroxyurea 1000mg a day for about a year. I have gone through a number of side effects but the most irksome now is the skin blisters. Itchy, sometimes painful, depending on the location. I can have a single one or a cluster of them. Currently using an Rx Hydrocortisone Ointment 2.5% twice daily. Helps a little. However, I think I have one in my throat. I have had them on my tongue and obviously can't treat them with hydrocortisone. The one in the throat causes a tickle which makes me cough and if food hits it, I sneeze. Cough drops help a bit and I usually wake up 2 times a night and have to use a cough drop. I'm checking to see if anyone else has experienced this. I'm 74 years old and am told the Rx will be a lifetime one. 🙁
Replies to "Hi, I am back on this site for more information. I initially got off it as..."
Have you seen your dentist lately? Not to make you worry, but any patches or sores in your mouth that don't resolve themselves in a week or two should be investigated. It's pretty simple: your doc or hygienist will shine a special light on the area. Depending on how it reflects the light determines the next step. Yes, these can be serious and can be cancerous. You may need a biopsy or be sent to an oral surgeon for the biopsy. Physicians do not work in the mouth, but we in the dental profession spend almost all our time in your mouth. Best wishes!
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Hi @blkalydy973 Welcome back to Connect. We have a number of members in the forum who are taking Hydroxyurea (HU) for their PV or ET. Some have side effects and have found a benefit from asking for a reduction in the dosage. After talking with their doctors they’ve been able to drop to 500mg daily or sometimes 1000mg every other day, etc. So it may be helpful to see if that is an option for you.
As we get older our bodies no longer metabolize medications like we did when we were younger. Drugs can linger in our body longer and have the potential to cause side effects.
Hydroxyurea is one of many drugs which can cause photosensitivity reactions. The skin can become easily irritated, inflamed, and more prone to burning.
I found some ongoing discussions for you with other members taking HU:
How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? With members @dancouclanel4 @koryw208 @gmacookie @lefsequeen and others…
https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
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This discussion with @dale1k @nypara66
@1995victoria @robert3861
Hydroxyurea side effects lessen over time?
https://connect.mayoclinic.org/discussion/hydroxyurea-side-effects-lessen-over-time/
Have you spoken with your doctor about possibly reducing your dosage to see if that makes a difference in your skin symptoms?