Severe Tinnitus : hydroxycarbamide vs interferon

[Gabrielle79]

Hello everybody, I hope some of you can help me with an answer...

I have had PV for over 30 years, JAK2 positive, clopidogrel, flebotomies. Seven years ago I got tinnitus which then was at a very disturbing but livable level: the last month it has increased to a quite unbearable. Since also my hematocrit and platelets have been going up the last two years I will have to start cytoreduction.

Unfortunately both Hydroxycarbamide and Interferon might have tinnitus as side effect. My specialist is not sure which one to chose.

Is there anyone who has tinnitus which became worse after taking hydroxy or interferon?? Is there anybody who did initially did not have tinnitus but got it after taking Hydrea or Interferon ??

thank you so much for your help.

Kind regards , Gabrielle

[Manouche]

healthunlocked.com/mpnvoice...

[Gabrielle79 in reply to Manouche]

thank you so much for your answer Manouche.. although I find it quite bad news: I wanted interferon ( in Holland we are waiting for Besremi to be accepted by health

insurance) because of my age and the results of interferon compared to hydroxy...

[Manouche in reply to Gabrielle79]

You’re welcome Gaby. In my opinion you shouldn’t hesitate and choose Pegasys if possible. It may take a few years before Besremi is available everywhere in Europe.

[Gabrielle79 in reply to Manouche]

In holland Besremi is accepted but they are arguing about the cost... if not for the tinnitus i would not doubt for one second to start with Pegasys.. a big dilemma .. I still have two month to think about it..thank you again for you help...

all the best from Gabrielle

[Manouche in reply to Gabrielle79]

Gabrielle, it seems clear that the longer one take it the better it gets:

Time on Pegasys when people have Tinnitus *:

< 1 month: 11.11 %

1 - 6 months: 63.25 %

6 - 12 months: 17.95 %

1 - 2 years: 6.84 %

2 - 5 years: 0.85 %

5 - 10 years: 0.0 %

10+ years: 0.0 %

ehealthme.com/ds/pegasys/ti...

[Gabrielle79 in reply to Manouche]

this is a great overview ! the most extensive one on tinnitus I have seen so far. I will also print it for my specialists. ( at first glance I do wonder if the time on pegasys when people have tinnitus is multi interpretable: fe that the people who get it/ have it stop taking pegasys ( unless it is mild ) so that it you get decrease in time...)

thank you so much for sharing this!

[Snagglepus]

Hi Gabrielle.

I did not have tinnitus before taking Hydroxycarbamide now I have terrible tinnitus! Started seven months after I started Hydroxycarbamide. I also had problems with my sinuses. Went to ENT who said that it was through the HU. My consultant wasn’t convinced. Was taken off aspirin as that can cause tinnitus and put on Clopidogrel.

I was taken off Hydroxy last August as the tinnitus was so bad and I felt so ill. In January was put on Angrelide which made the tinnitus worse within 30 mins of taking it!

As my platelets had risen again my consultant put me back on a low dose HU to see if I could tolerate it. The Tinnitus again has been highlighted and is constantly there.

I’m now waiting to go and see an MPN specialist.

Take care.

Karen.

[Gabrielle79 in reply to Snagglepus]

Hi Karen.. thank you so much for answering.... I am really very sorry to read your post.For me tinnitus is worse than all my other symptoms of PV together: fatigue, erythromelalgia -severe- itching, weightloss and several more... i was hoping there would be nobody taking hydrea with tinnitus problems but your story is very clear... I have changed since three days from clopidogrel to aspirin ( despite the fact that I know that aspirin can cause tinnitus ) because I noticed an increase in my erythromelalgia (and tinnitus). I have to be tested for CYP2C219, a mutation which causes ( in 25-30% of Caucasian people) an liver enzym not to metabolize clopidogrel sufficiently... after taking aspirinI felt immediate change in my erythromelalgia symptoms but not in my tinnitus ( that is often irreversible).I fear that after a while it might worse the tinnitus I have the feeling that almost all the medication for mpn have a possible bad effect on tinnitus. I am waiting for tinnitus specialist opinion but that is now postponed because of corona. If any valuable information comes out of it I will let you know.

all the best for you, Gabrielle

[Snagglepus in reply to Gabrielle79]

All the best to you Gabrielle. Hope you’re coping with this lockdown.

[Gabrielle79 in reply to Snagglepus]

Thank you Karen.. the most complicating thing about lock down right now is that is interferes with looking for a solution for my tinnitus problem...I called the tinnitus clinic ( that is not seeing patients during lock down) to ask them if I could write some of my questions to the specialist per mail so i might have some answers before seeing my MPN specialist and deciding what to do...and isolation is certainly not favorable for tinnitus.. distraction and being busy is best but now very difficult...but i am sure you know what I am talking about...

take care, all the best for now...

[Snagglepus in reply to Gabrielle79]

I know exactly what you mean.

I read somewhere that if you put the palms of your hands over your ears (fingers pointing to the back) and tap the back of your head for thirty seconds it’s supposed to help.

I’m going to try and see if it works.

I’ll let you know.

Might be useless information (there’s a lot around at the moment) but worth a try.

Karen.

[Cyclemore]

Hello Gabrielle

I was diagnosed with MPN in May 2017, I am 62, JAK2 +ve, have ET & PV and take 1g hydroxy per day.

I started with tinnitus 15+ years ago; convinced it started when I was doing a night school course in a workshop where someone was sawing metal making a hideously loud screech. My tinnitus has not changed at all before or since medication and I tend only to be aware of it if I think about it, like now!! Otherwise my hearing is pretty good except for where there is a lot of background noise like a busy pub but alas that won't be an issue for some time...

Regards

Dudley..

[Gabrielle79 in reply to Cyclemore]

Hi Dudley,

thank you very much for answering.

i find it hopeful to read that hydroxy had not changed your tinnitus ...and I also hope that I can get used to my new level of tinnitus, just like you....

kind regards Gabrielle

[Threelions]

Hi, I started getting bouts of tinnitus after going on Interferon.

I can honestly say they are short spells and, whilst annoying, don’t hinder me day to day.

(ET Jak2+)

[Gabrielle79 in reply to Threelions]

thank you for your reply threelions, I will take it into account concerning my decision...

just one more question: how long have you been taking interferon and have the bouts been the same in intensity since the beginning?

[Threelions in reply to Gabrielle79]

Hi,

I have been on for about 10 mths. I noticed tinnitus (as it was something new) almost straight away. Bouts of about 3-5 mins a handful of times a day.

To be honest I’m not sure I really pay much attention to the daytime bouts now as they aren’t severe and are infrequent. They are more noticeable at night before I go to sleep but don’t last long and, as I say, they don’t really affect me at all now.

In short I would say it’s got better but it really wasn’t that significant earlier in the Interferon treatment. As a side effect of Interferon it’s very minor in my case.

Hope this helps & wish you all the best.

PS, talk about tinnitus always makes me remember my days (many years ago) when I played bass in a heavy rock band. We used to turn the amps up way too loud and the tinnitus afterwards was really loud😀 , ahhh to remember our youth......when life was much less complicated 😀

Stay Safe x

[Gabrielle79 in reply to Threelions]

yes.. I think a lot about those days lately..they were the best...

thank you for your info., it all helps... and I am glad for you that it is minor in your case.. mine was before but now definitely not.. so I am anxious what to chose.

take care, all the best from Gabrielle

[Strumin210]

I just developed tinnitus ( pulsatile) if I spelled that correctly. I did not have it until taking hydroxurea for my platelet issue. This past Friday I had carotid artery surgery on my right side due to an 80 percent blocked artery. Thought that would have cured the pulsating tinnitus. It did not unfortunately. It seems a little louder. I did not know tinnitus was a side effect of hydroxurea. I will look into that as it has not done much on reducing my platelets. Last check was 938,000,around 3 times what they should be. Let me know what is happening with your tinnitus and what cures it. Greetings from LA,(LOWER ALABAMA)

[Gabrielle79 in reply to Strumin210]

hi Strumin, sorry for the late reaction.. for some reason I just saw your reaction now...

I immediately stopped de Hydrea. The extreme tinnitus went away ( I still thank God for that) I changed back to Pegasys and the tinnitus is now still at its old level ( loud but not unlivable) The level I have now will never disappear but my only concern is that is does not get worse. I have to keep all me levels low ( my platelets are at 270, htc 0.40 leuko: 5.0) your platelets are very high.. Hydrea can cause or worsen tinnitus. but interferon can also have tinnitus as side effect.. it is different in everybody which side effect will or will not appear. So despite other ( very bothersome )side effects from the interferon I have to stick with it.. How are you doing now??

[Strumin210 in reply to Gabrielle79]

Thanks for responding. My tinnitus is better since I have quit the hydroxurea mostly,only about 3 times a week. At the Oncology doctor they said my platelets are around 539 thousand. At my GP office they were over 900 thousand. Makes me wonder which test is accurate????? Hope all is well with you during the Christmas season. Blessings from LA ( LOWER ALABAMA)

[Gabrielle79 in reply to Strumin210]

Hi Strumin, good to hear that your tinnitus is less.. I find it one of the most horrible symptoms/ side effects. The difference between your values in gp office and hospital is quite big. But several factors can influence values: there are interlaboratory differences ( this is why you have to always try to use the same laboratory) also personal factors can be of influence fe stress can very rapidly raise platelets. flebotomies raise platelet count as well.( as of course does hydrea) So best is to see how the platelets behave in a longer time lapse and use the same laboratory. ( which i guess you will be doing since you have now a fixed oncologist)

I wish you a very happy Christmas as well with family and friends.. take care, all the best for now , Gabrielle