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Profile picture for mumblipeg

Is ear pain a side effect of being on Hydroxyurea?

Posted by mumblipeg @mumblipeg, Sep 20 7:32pm

I am 73, female and am taking 3 days of HU weekly (500mg). My platelets have come down from 1200 in March to 350 range this week, so my dose is being reduced and closely monitored. While I'm very grateful for this, I am still, after many months, struggling with earaches. I'm off balance at times due to this. I have been on 10 days of antibiotic with not much change. My lymph glands in my neck were swollen and painful last week, and the antibiotic did take care of that. But now that the 10 days is up, the ear pain is still there. This has gone on for over 4 months. I attributed it to summer allergies, but decongestant or allergy meds don't help.
Does HU cause ear pain, hearing loss, just wondering why I can't seem to get better! I have JAK2, ASXL2 and TET2 mutations- presently ET is my diagnosis. I take low dose Aspirin every other day along with HU. Is anyone else experiencing ear pain with ET on HU?
Thanks for any input!

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Profile picture for eloise999
eloise999 | @eloise999 | Sep 21 9:28am

I don’t experience ear pain. I take 500 mg HU daily my Tinnitus is better now that my platelets have started to come down. Maybe you should go to an ENT about this? Good luck.

REPLY
Profile picture for etandme0983
etandme0983 | @etandme0983 | Sep 21 9:29am

I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with baby aspirin since January after Jak2/ET diagnosis in September . I had no symptoms for months on Hydrea , and my platelet count dropped to 335 , but in July, I started having ear aches; fluid buildup with sharp pains behind the left ear and both ears stopping up . My local PA confirmed the fluid in both ears and put me on a round of prednisone which cleared it up . However , I still have the sharp pains, ears stopping up and dizziness . Also , I have had so much mucus in my throat , I take 2 Mucinex every day . Other side effects started to pop up ; horrific migraines , bloating and constipation. I decided to reduce the number of days on Hydrea to 4x a wk and I lost 4 lbs, bloating subsided , and ear pain was better .
My recent Oncologist visit last week showed my platelets were still great , but Oncologist/hematologist decided I should stop Hydrea and take ANA , an alternative , and go to an ENT and a GI Specialist. The pharmacy called me and said the drug would be $100/mth using my Medicare drug plan .

I have made a conscious decision to not take the chemo( which has serious side effects ) and just take 2 baby aspirin , eat healthy and continue exercising .

Also, Drs said after my DNA threading , that ET was not heredity, yet 3 family members had been diagnosed and were taking Hydrea .

Hopefully, I stay healthy . My decision isn’t for everyone , but it is mine .

REPLY
4 replies
Profile picture for mumblipeg
mumblipeg | @mumblipeg | Sep 21 11:10am
In reply to @etandme0983 "I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with..." + (show)
Profile picture for etandme0983 @etandme0983

I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with baby aspirin since January after Jak2/ET diagnosis in September . I had no symptoms for months on Hydrea , and my platelet count dropped to 335 , but in July, I started having ear aches; fluid buildup with sharp pains behind the left ear and both ears stopping up . My local PA confirmed the fluid in both ears and put me on a round of prednisone which cleared it up . However , I still have the sharp pains, ears stopping up and dizziness . Also , I have had so much mucus in my throat , I take 2 Mucinex every day . Other side effects started to pop up ; horrific migraines , bloating and constipation. I decided to reduce the number of days on Hydrea to 4x a wk and I lost 4 lbs, bloating subsided , and ear pain was better .
My recent Oncologist visit last week showed my platelets were still great , but Oncologist/hematologist decided I should stop Hydrea and take ANA , an alternative , and go to an ENT and a GI Specialist. The pharmacy called me and said the drug would be $100/mth using my Medicare drug plan .

I have made a conscious decision to not take the chemo( which has serious side effects ) and just take 2 baby aspirin , eat healthy and continue exercising .

Also, Drs said after my DNA threading , that ET was not heredity, yet 3 family members had been diagnosed and were taking Hydrea .

Hopefully, I stay healthy . My decision isn’t for everyone , but it is mine .

Jump to this post

THANKS for responding. Your symptoms are so similar to mine. I know that HU has reduced my ability to fight off colds, viruses and presently, this long-standing ear infection. Thanks for your input. I want to continue to lower my dose of HU as long as I'm in the normal range, so that I can fight off the infections that are around. I'm reluctant to blame every little discomfort I have on HU because it HAS done what I needed it for--lowered my platelets to normal. But now, I need my life back! Living on HU is reducing my ability to fight infections, suppressing my immune system, also causing weight gain, bloating, hair thinning, dizziness, bone pain, fatigue and brain fog. I'm aiming to get off this drug if possible, without any other chemo.
I hope you stay well on the aspirin, exericise and healthy eating. That's my goal, also.

REPLY
Profile picture for vickieannb57
vickieannb57 | @vickieannb57 | Sep 21 11:23am
In reply to @etandme0983 "I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with..." + (show)
Profile picture for etandme0983 @etandme0983

I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with baby aspirin since January after Jak2/ET diagnosis in September . I had no symptoms for months on Hydrea , and my platelet count dropped to 335 , but in July, I started having ear aches; fluid buildup with sharp pains behind the left ear and both ears stopping up . My local PA confirmed the fluid in both ears and put me on a round of prednisone which cleared it up . However , I still have the sharp pains, ears stopping up and dizziness . Also , I have had so much mucus in my throat , I take 2 Mucinex every day . Other side effects started to pop up ; horrific migraines , bloating and constipation. I decided to reduce the number of days on Hydrea to 4x a wk and I lost 4 lbs, bloating subsided , and ear pain was better .
My recent Oncologist visit last week showed my platelets were still great , but Oncologist/hematologist decided I should stop Hydrea and take ANA , an alternative , and go to an ENT and a GI Specialist. The pharmacy called me and said the drug would be $100/mth using my Medicare drug plan .

I have made a conscious decision to not take the chemo( which has serious side effects ) and just take 2 baby aspirin , eat healthy and continue exercising .

Also, Drs said after my DNA threading , that ET was not heredity, yet 3 family members had been diagnosed and were taking Hydrea .

Hopefully, I stay healthy . My decision isn’t for everyone , but it is mine .

Jump to this post

Make sure to check with the drug company you see online and tv. I tried Good Rx before and used it with no insurance and it helped a lot with the price.

REPLY
Profile picture for eloise999
eloise999 | @eloise999 | Sep 22 7:25am
In reply to @etandme0983 "I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with..." + (show)
Profile picture for etandme0983 @etandme0983

I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with baby aspirin since January after Jak2/ET diagnosis in September . I had no symptoms for months on Hydrea , and my platelet count dropped to 335 , but in July, I started having ear aches; fluid buildup with sharp pains behind the left ear and both ears stopping up . My local PA confirmed the fluid in both ears and put me on a round of prednisone which cleared it up . However , I still have the sharp pains, ears stopping up and dizziness . Also , I have had so much mucus in my throat , I take 2 Mucinex every day . Other side effects started to pop up ; horrific migraines , bloating and constipation. I decided to reduce the number of days on Hydrea to 4x a wk and I lost 4 lbs, bloating subsided , and ear pain was better .
My recent Oncologist visit last week showed my platelets were still great , but Oncologist/hematologist decided I should stop Hydrea and take ANA , an alternative , and go to an ENT and a GI Specialist. The pharmacy called me and said the drug would be $100/mth using my Medicare drug plan .

I have made a conscious decision to not take the chemo( which has serious side effects ) and just take 2 baby aspirin , eat healthy and continue exercising .

Also, Drs said after my DNA threading , that ET was not heredity, yet 3 family members had been diagnosed and were taking Hydrea .

Hopefully, I stay healthy . My decision isn’t for everyone , but it is mine .

Jump to this post

Very interesting. I have mucus in my throat. I assumed it is a flare up of some GERD I started to get when I think my disease started to get worse. I will this in mind. I have been on Hydra since March.

REPLY
Profile picture for nohrt4me (Jean)
nohrt4me (Jean) | @nohrt4me | Sep 22 8:48am
In reply to @etandme0983 "I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with..." + (show)
Profile picture for etandme0983 @etandme0983

I am 70, 112 lbs , 5’4” and have been on Hydrea , 500 mg with baby aspirin since January after Jak2/ET diagnosis in September . I had no symptoms for months on Hydrea , and my platelet count dropped to 335 , but in July, I started having ear aches; fluid buildup with sharp pains behind the left ear and both ears stopping up . My local PA confirmed the fluid in both ears and put me on a round of prednisone which cleared it up . However , I still have the sharp pains, ears stopping up and dizziness . Also , I have had so much mucus in my throat , I take 2 Mucinex every day . Other side effects started to pop up ; horrific migraines , bloating and constipation. I decided to reduce the number of days on Hydrea to 4x a wk and I lost 4 lbs, bloating subsided , and ear pain was better .
My recent Oncologist visit last week showed my platelets were still great , but Oncologist/hematologist decided I should stop Hydrea and take ANA , an alternative , and go to an ENT and a GI Specialist. The pharmacy called me and said the drug would be $100/mth using my Medicare drug plan .

I have made a conscious decision to not take the chemo( which has serious side effects ) and just take 2 baby aspirin , eat healthy and continue exercising .

Also, Drs said after my DNA threading , that ET was not heredity, yet 3 family members had been diagnosed and were taking Hydrea .

Hopefully, I stay healthy . My decision isn’t for everyone , but it is mine .

Jump to this post

Is ANA abbrev for anagrelide?

The doc always chalked my worsening allergies up to the inflammatory effects of ET. I take daily Claratin, which helps, but it's fall hay fever season, so, yep, ear pressure and sinus congestion.

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