Anyone else taking Hydroxyurea plus Gabapentin for Polycythemia Vera?

Posted by 1hostahoney @1hostahoney, Oct 17 10:14pm

Diagnosed with PV two years ago at age 69. Until this diagnosis I had been very healthy my whole life. Never took medication except for low dose antidepressant when I divorced. Hydroxyurea 500 mg daily is working but still get phlebotomy every 5 months cause the number creeps up slightly to 48 or 49. My question to others is do you experience night sweats? My doctor has prescribed Gabapentin 100 mg to be taken before bed. He said it should help. I hate taking medication cause my body has always been healthy. Parents never took anything cause their health was good. So strange to be diagnosed with PV the same year I got the Covid shots and booster. I’m convinced the shots caused my PV. But that’s my belief. My daughter agrees. She’s a radiology assistant and is 43. She did not get Covid shots. Too skeptical. Sure wish I hadn’t. I’ll discuss this with anyone who wants to reply.

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christinele | @christinele | Oct 18 6:26am

I was diagnosed with ET right after receiving the covid shot and like you I think it was caused by it. The first 2 years I didn’t take any thing just watched my platelets rise. Since then my red blood cells rose and I started on hydrox and Dr. now says it’s PV. Increased HY dosage and had a few phlebotomies. Wish I never had taken the covid shot!

nypara66 | @nypara66 | Oct 18 6:41am

Hello I have PV JAK2 Positive now for almost three years. Age 59. I get hot flashes and night sweats but am menopausal. My question would be if they prescribed that for the night sweats? That’s a serious medication and is used for nerve pain. I was offered that when my hands and feet began burning terribly but it was only occasionally so I decided it was too soon in the game to go on such a serious medication. Taking 500 Hydroxyurea daily and baby aspirin currently with phlebotomies about every 10 weeks.

terry1104 | @terry1104 | Oct 18 9:47am

My wife has been diagnosed with polycethemia and porpheria. Genetic tests show not genetic. Is there anyone else with both diseases? Both have appeared since she had the covid vaccinations.

deanbears | @deanbears | Oct 18 11:15am

PV was around before the COVID shots, so I hope that puts your mind at ease. Also, I am 55 and take 1500 HU daily and 600 mg Gabapentin twice daily. 100 mg is a very small dose, but there enough studies to suggest one can become dependent on it and I must show my ID at the pharmacy. Also, I take it for back issues that predate my oncology diagnosis and get terrible night sweats. All that said this is just my personal experience. And I respect your reluctance to take medication. Ask your doctor will it make your quality of life better or prolong your life. Perhaps that will help you decide. Best of luck on your journey.

steiner | @steiner | Oct 19 1:28pm

In reply to @christinele "I was diagnosed with ET right after receiving the covid shot and like you I think..." + (show)

@christinele Same. Diagnosed with Primary Cutaneous Marginal Zone B-Cell lymphoma after Covid shot, I wish I had never taken it!!

bracha | @bracha | Oct 19 9:11pm

Please don't blame vaccines for your PV diagnosis.
I, like yourself, have led an unmedicated life until 73 and then the PV diagnosis was made. I didn't have any symptoms other than my annual full blood panel showed high RBC and my wise PCP immediately had further tests run looking for the JAK2 identifier--it was there.
I have had all the COVID vaccines and boosters since the beginning with no side effects. Also had the more recent available 2-dose shingles vaccine as well as RSV shot. My PV has caused minimal issues so far and I am careful when travelling to wear a mask in crowds as those of us with medicated PV have a compromised immune system. Taking precautionary vaccines may mean you avoid layering illnesses on yourself.

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