Refuse to Take Medication (Plaquenil / Hydroxychloroquine Ototoxicity)

[Holly1987]

I suffer from lupus which is an autoimmune disease, recently my Rheumatologist has wanted me to go on a new medication called plaquenil to help stop flares. One of the first side effects listed for plaquenil is "May cause ringing in the ears" naturally I refused to take it and the following conversation ensued

Dr: "Holly may I ask why you have chosen not to take the medication? It's an amazing drug that will help tremendously with your symptoms"

Me: " Unfortunately I just can't risk taking a drug that may cause my tinnitus to become louder"

Dr: "so you're telling me you aren't even willing to try a potentially life changing medication because you are worried it will make your tinnitus louder?"

Me: "yes that's correct"

He was extremely frustrated with me and really couldn't understand why I would be so unwilling to try this new medication. I would rather die of lupus than have my tinnitus get louder, I don't say that for dramatic effect, I really mean it...

I know people in here will understand my decision, unfortunately my Dr and family don't...

 

[Digital Doc]

Your body, so your choice. Did you ask about a possible alternate without the ototoxicity?

People who dont have this dont get it. We are the ones with a fire alarm wondering how fast we can put ear plugs in rather than getting out of the building...

 

[Holly1987]

So true @Digital Doc. I have looked into alternatives and will be discussing them with my Rheumatologist when I see him next. Unfortunately plaquenil is the #1 drug for lupus *sigh*

 

[Digital Doc]

@Holly1987 Well again, your choice. There are alternatives for this reason. Only you can balance which is worse, the lupus or the tinnitus.

What is the source of your tinnitus?

 

[OnceUponaTime]

I would rather die of lupus than have my tinnitus get louder, I don't say that for dramatic effect, I really mean it...

I understand completely.

Sorry that you are struggling with lupus and tinnitus. I hope you and your Dr. can find an alternative medicine that can help you. Maybe you can tell him to check Tinnitus Talk and read some of the messages here. (Or maybe print some out and give it to him to ensure he might read some.)

I hope you get the help you need and feel better.
Once...​

 

[Holly1987]

@Holly1987 Well again, your choice. There are alternatives for this reason. Only you can balance which is worse, the lupus or the tinnitus.

What is the source of your tinnitus?

I'm not 100% sure what caused my tinnitus, I had a few things going on at the time I got it. I'm fairly certain it was the high doses of antibiotics I was on that did it.

 

[Bam]

I know people in here will understand my decision, unfortunately my Dr and family don't...

You cannot blame them. Tinnitus is so awful that unless you have been tortured endlessly day and night for years, without hope of escape you simply don't have any frame of reference for this condition.

In peoples self preserving minds they want to see the world as inherently 'safe' so they refuse to believe something so torturous, that you would rather die of a disease than live with it, exists......Sadly we obviously know differently.

 

[Holly1987]

Very true @Bam, thank you for reminding me.

 

[Bam]

Very true @Bam, thank you for reminding me.

I always cast my mind back to how I would have perceived tinnitus before I got it. And even though I knew it was probably awful and had heard about the suicides i still couldn't have even got remotely close to imagining the fear, depression and endless sadness and grief it casts over your life.

We have doctors on here who themselves have been destroyed by T. They must feel profound disbelief at the level of viciousness even more acutely as they would probably have sat in front of devestated patients wondering what all the fuss was about for years...Now they get it.

 

[Agrajag364]

@Bam you have loud tinnitus though, remember that is a different kettle of suffering fish from quiet tinnitus or probably what is average tinnitus.

 

[Digital Doc]

I'm not 100% sure what caused my tinnitus, I had a few things going on at the time I got it. I'm fairly certain it was the high doses of antibiotics I was on that did it.

Sounds like a drug induced tinnitus, which should make you more suspicious to avoid drugs that are associated with tinnitus.

 

[Samantha R]

@Holly1987 I'm sorry to hear of this dilemma, but completely understand your reasoning. It's about quality of life as well, and clearly we know the impact that tinnitus has on that. It's sad that your doctor can't understand that, but he obviously has your best interests at heart and wants to treat your lupus.

I think that many of us at some point in our lives will be faced with a similar decision.
With cancer rates so high, the prospect of chemotherapy which is known to trash ears is very real.

A friend of mine's husband has cystic fibrosis. He receives high doses of gentamycin by IV when unwell and as a result, he now has severe tinnitus. The tinnitus does get him down a lot and we had a lengthy discussion about this, but it's a matter of life and death for him, and he's chosen life. Such a hard position to be in, as if dealing with CF or lupus isn't challenging enough.

What does your doctor think of low dose naltrexone (LDN) for lupus?
https://www.ldnscience.org/resources/interviews-patients/kelly-peterson

 

[Bill Bauer]

I would rather die of lupus than have my tinnitus get louder, I don't say that for dramatic effect, I really mean it...

I didn't realize how common it is for people to not understand how horrible tinnitus really is... When I learned about tinnitus (years before I got it), I immediately knew that this would be devastating.

 

[Holly1987]

@Samantha thank you so much for finding an alternate drug, it means a lot. I've put it on the list to chat to my Dr about.

I'm so sorry to hear about your friends tinnitus, I really feel for him, it's such a tough decision. I really don't think I could mentally handle an increase in my tinnitus, my last spike nearly broke me and I'm still not great...

 

[Samantha R]

@Samantha thank you so much for finding an alternate drug, it means a lot. I've put it on the list to chat to my Dr about.

I'm so sorry to hear about your friends tinnitus, I really feel for him, it's such a tough decision. I really don't think I could mentally handle an increase in my tinnitus, my last spike nearly broke me and I'm still not great...

Holly, I completely understand. I really do. I think we all do.
My friend is OK, he needs the gentamycin or the infection will destroy whats left of his lungs and he'll die for sure. He is not going to live a full lifespan, in fact he's already exceeded it. He's got a young son and I guess he has no choice.

I'm not sure mainstream doctors necessarily prescribe LDN. Dirk DeRidder actually mentions it as a potential treatment for tinnitus. I have read about it as I believe LDN is anti inflammatory and as my tinnitus responds to prednisolone and curcumin, I had planned to try it.
However, finding a prescriber is the challenge.

Anyway, I believe it's promising and it can't really do any harm to try.

 

[Lilah]

@Holly1987 what drug did you end up taking instead of Plaquenil? I have lupus and have been taking this drug for 12 years.

 

[Emanuel Lourenco]

I didn't realize how common it is for people to not understand how horrible tinnitus really is... When I learned about tinnitus (years before I got it), I immediately knew that this would be devastating.

That's because for most people the frame reference for tinnitus is a very gentle hiss when everything is silent... they have no clue it can get extremely loud and cancerous to the point it makes you hate being alive

 

[Holly1987]

@Lilah I'm due to see my Rheumatologist in 2 weeks and will discuss then. I'm thinking low doses of azathioprine as this doesn't appear to make tinnitus worse. It does however cause hairloss

 

[linearb]

I had a to fire a primary care doctor, because first they were insisting I take Cipro for something that almost certainly wasn't a bacterial infection, and when I refused their backup plan was Levaquin. I wouldn't take another fluoroquinolone outside of truly emergent circumstances (and the specialist who eventually fixed me up agreed that it was smart to refuse them, given my background).

Bottom line, don't be afraid to be your own best advocate and to just refuse treatment you don't want. If you took your car to a repair shop and they were insisting on replacing your carpets with a new color for no good reason, you probably wouldn't let them work on your car... same principle.

 

[Tamara]

I totally agree with you. Have you read the alert that came out about fluoroquinolones? A group of them have already caused aortic aneurysm.