Advice on Medication for Autoimmune Condition (Lupus) — Worried Making My Tinnitus Worse

[makeyourownluck]

Hi Guys,

So, I am now 3 months in and have joined the chronic tinnitus club. The high pitched noise is slightly better as I can ignore it more easily. Just the pulsate tinnitus and pressure in my right ear that's getting by me down these days but hopefully I'll begin adapting to those as well.

Anyway, the reason for my post is that it's looking increasingly likely that I have lupus - Strong positive ANA test result, rash, red hot knees on both sides, constantly tired (although only truly exhausted occasionally) and headache. Sciatica too but I don't know if that is related?

My issue is that I am afraid that the medication to treat lupus will make my tinnitus worse, but also afraid not to take it in case of disease progression. As it is just now I'm in pain most of the time.

I would really appreciate if anyone could share their personal experiences taking medications like:

• hydroxychloroquine (Plaquenil)
• cyclosporine (Gengraf, Neoral, Sandimmune)
• azathioprine (Azasan, Imuran)

 

[Exit]

I'm on Imuran 150 mg. No problems there. I stopped for a while to let my ears heal. No help...

My tinnitus is not worse when I started it up again either. Been on it since 2007.

 

[makeyourownluck]

@Exit, thanks for your response. Definitely got a fear of medicine just now, so good to hear a positive story.

 

[Exit]

@Exit, thanks for your response. Definitely got a fear of medicine just now, so good to hear a positive story.

Could be different if yours is drug induced.

The ear can also get better when you get the lupus inflammation under control. Although most likely no effects on the ear whatsoever... :/

Protecting from noise and barotrauma seems most logical.

 

[makeyourownluck]

Could be different if yours is drug induced.

The ear can also get better when you get the lupus inflammation under control. Although most likely no effects on the ear whatsoever... :/

Protecting from noise and barotrauma seems most logical.

That's the thing, I am really not sure what caused it. Accumulated noise exposure (I was hammering nails about 1 hour before it started), Doxycycline (I took 4x100 mg then stopped) or the shingles infection I was diagnosed with the week after.

I wish I could say with certainty what it was.

 

[Exit]

That's the thing, I am really not sure what caused it. Accumulated noise exposure (I was hammering nails about 1 hour before it started), Doxycycline (I took 4x100 mg then stopped) or the shingles infection I was diagnosed with the week after.

I wish I could say with certainty what it was.

Well the least likely of the 3 is Doxycycline.

Antibiotics do pose a heavy load on kidneys if dosage is high...

I think you'll be fine on Imuran is my gut feeling. My only side effects from them are slight fatigue. They do take about 3 months to have an effect on lupus.

 

[Lilah]

I have had lupus for 15 years and have taken Plaquenil/HCQ throughout this entire time. I am not familiar with the other medications you mentioned.

I had whooshing pulsatile tinnitus (mostly left ear) during the first months of my diagnosis, along with other bad lupus symptoms. I believe the pulsatile tinnitus was actually a manifestation of the lupus. The whooshing pulsatile tinnitus (left year only) stopped after about a year and then restarted about 3 years ago along with my high pitched somatic tinnitus; it became noticeable when I got up or moved quickly. The whooshing pulsatile tinnitus is occasional and is worse when I turn my head. I don't think Plaquenil caused the pulsatile tinnitus (or the high pitched tinnitus).

One rheumatologist did say tinnitus is stated as one of the side effects of Plaquenil, but his patients don't have high pitched tinnitus and doesn't think mine is caused by Plaquenil either. However, my current rheumatologist said Plaquenil and other medications can cause hearing loss, which could cause high pitched tinnitus. I did not discuss pulsatile tinnitus with them.

On a separate note, I believe Vitamin D helps a lot with lupus (this is usually not advertised by rheumatologists). However, some on this forum say Vitamin D worsens tinnitus.

 

[makeyourownluck]

Well the least likely of the 3 is Doxycycline.

Antibiotics do pose a heavy load on kidneys if dosage is high...

I think you'll be fine on Imuran is my gut feeling. My only side effects from them are slight fatigue. They do take about 3 months to have an effect on lupus.

That's what I'm thinking, maybe an unfortunate mix of events. The diagnosis of Lupus is rather scary without worrying about the bloody medication.

Having had issues for over 2 years, in a way I am relieved to get a diagnosis, doctors were treating me like a hypochondriac for so long and it was very frustrating! But it's not exactly good news!

Have been COVID-19 vaccinated? And how your lupus has progressed (if you don't mind sharing of course)? I'm only 29 and fearful that I will become increasingly immobile, especially since I have a little one. I feel guilty that I cannot play with her the way I used to.

 

[makeyourownluck]

I have had lupus for 15 years and have taken Plaquenil/HCQ throughout this entire time. I am not familiar with the other medications you mentioned.

I had whooshing pulsatile tinnitus (mostly left ear) during the first months of my diagnosis, along with other bad lupus symptoms. I believe the pulsatile tinnitus was actually a manifestation of the lupus. The whooshing pulsatile tinnitus (left year only) stopped after about a year and then restarted about 3 years ago along with my high pitched somatic tinnitus; it became noticeable when I got up or moved quickly. The whooshing pulsatile tinnitus is occasional and is worse when I turn my head. I don't think Plaquenil caused the pulsatile tinnitus (or the high pitched tinnitus).

One rheumatologist did say tinnitus is stated as one of the side effects of Plaquenil, but his patients don't have high pitched tinnitus and doesn't think mine is caused by Plaquenil either. However, my current rheumatologist said Plaquenil and other medications can cause hearing loss, which could cause high pitched tinnitus. I did not discuss pulsatile tinnitus with them.

On a separate note, I believe Vitamin D helps a lot with lupus (this is usually not advertised by rheumatologists). However, some on this forum say Vitamin D worsens tinnitus.

I'm glad to hear that your pulsatile tinnitus improved for 11-12 years. It really is driving me insane! Did you get a feeling of pressure in your affected ear? I wake up with slight pressure but as the day goes on it gets worse.

How would you say Plaquenil treatment has been for you? Has it helped any other symptoms? Pain in particular? The pain can be unbearable. This is the medication the rheumatologist seems to favour although it's the one I am most afraid of as far as tinnitus goes.

Have been vaccinated against COVID-19? I've been afraid to get it.

 

[Exit]

That's what I'm thinking, maybe an unfortunate mix of events. The diagnosis of Lupus is rather scary without worrying about the bloody medication.

Having had issues for over 2 years, in a way I am relieved to get a diagnosis, doctors were treating me like a hypochondriac for so long and it was very frustrating! But it's not exactly good news!

Have been COVID-19 vaccinated? And how your lupus has progressed (if you don't mind sharing of course)? I'm only 29 and fearful that I will become increasingly immobile, especially since I have a little one. I feel guilty that I cannot play with her the way I used to.

Hey<3

I know the feeling of getting a serious diagnosis after being sick many years. Many thoughts going around. I was very suicidal before diagnosis, yet it's awful to finally have that serious diagnosis.

I have Crohn's disease, not lupus, so I don't have much info there. What I can say is you will probably be a lot better when properly medicated. and the sooner the better!

Autoimmune disease and rough vaccines is a real dilemma. If anyone says anything else they are not really looking after your interest.

If you live in a bubble in a country with light COVID-19, I would say don't risk it. Your immune system is a mess already.

That said, you risk a lot if you get COVID-19 on harsh immune suppressant.

I'm not taking any more vaccines unless it's old well experienced ones like tetanus and I get bitten or cut by rusty nails.

 

[Lilah]

That's what I'm thinking, maybe an unfortunate mix of events. The diagnosis of Lupus is rather scary without worrying about the bloody medication.

Having had issues for over 2 years, in a way I am relieved to get a diagnosis, doctors were treating me like a hypochondriac for so long and it was very frustrating! But it's not exactly good news!

Have been COVID-19 vaccinated? And how your lupus has progressed (if you don't mind sharing of course)? I'm only 29 and fearful that I will become increasingly immobile, especially since I have a little one. I feel guilty that I cannot play with her the way I used to.

Nowadays I barely think about lupus, because of the tinnitus. Yes, I believe Plaquenil is a great medication and was also told it is the safest option. Within a couple of months of taking Plaquenil when I was first diagnosed, I felt much better. I had bad joint pain during the time I was diagnosed. There was a time years ago when I stopped taking medication because of insurance issues, and my joint pain returned. But, Plaquenil stopped that.

I also started Vitamin D (4000 IU), multivitamin, Vitamin C, B-12, and Zinc daily because of COVID-19 and my inflammation marker (sed. rate) has been the lowest in all 15 years. You should definitely check your Vitamin D levels and ensure you have a high amount (within the recommended range).

I have not been vaccinated yet as I am teleworking full-time currently but I will need to soon because of work and travel.

 

[makeyourownluck]

Hey<3

I know the feeling of getting a serious diagnosis after being sick many years. Many thoughts going around. I was very suicidal before diagnosis, yet it's awful to finally have that serious diagnosis.

I have Crohn's disease, not lupus, so I don't have much info there. What I can say is you will probably be a lot better when properly medicated. and the sooner the better!

Autoimmune disease and rough vaccines is a real dilemma. If anyone says anything else they are not really looking after your interest.

If you live in a bubble in a country with light COVID-19, I would say don't risk it. Your immune system is a mess already.

That said, you risk a lot if you get COVID-19 on harsh immune suppressant.

I'm not taking any more vaccines unless it's old well experienced ones like tetanus and I get bitten or cut by rusty nails.

Yeah, it's a dilemma. I'm in the Scotland, I wish I was in a bubble country! It's been an absolute riot over here.

COVID-19 is a big worry for me now, but I want to give it some time for my tinnitus to settle before I take any medication/vaccines in the hope that it continues on a downward trend.

Some big decisions to be made.

 

[makeyourownluck]

Nowadays I barely think about lupus, because of the tinnitus. Yes, I believe Plaquenil is a great medication and was also told it is the safest option. Within a couple of months of taking Plaquenil when I was first diagnosed, I felt much better. I had bad joint pain during the time I was diagnosed. There was a time years ago when I stopped taking medication because of insurance issues, and my joint pain returned. But, Plaquenil stopped that.

I also started Vitamin D (4000 IU), multivitamin, Vitamin C, B-12, and Zinc daily because of COVID-19 and my inflammation marker (sed. rate) has been the lowest in all 15 years. You should definitely check your Vitamin D levels and ensure you have a high amount (within the recommended range).

I have not been vaccinated yet as I am teleworking full-time currently but I will need to soon because of work and travel.

It's great to hear that you don't even think about Lupus anymore! It's been extremely difficult for me recently. I just want the pain to stop, and to be able to kick a ball about the garden with my little girl again. Used to love dancing as well, not proper classes or anything, just dancing about the kitchen. Sometimes I miss my old life.

If you get vaccinated please let me know how it goes. Appreciate your reply. I'm finding the whole situation a bit overwhelming, especially since I don't know anyone with an autoimmune condition.

 

[Exit]

Yeah, it's a dilemma. I'm in the Scotland, I wish I was in a bubble country! It's been an absolute riot over here.

COVID-19 is a big worry for me now, but I want to give it some time for my tinnitus to settle before I take any medication/vaccines in the hope that it continues on a downward trend.

Some big decisions to be made.

You survived 1.5 years so start to treat the Lupus first...

In half a year maybe it's no dilemma left

 

[makeyourownluck]

You survived 1.5 years so start to treat the Lupus first...

In half a year maybe it's no dilemma left

Fingers crossed. Thanks for sharing your experience. It's a great help.

 

[Moni97]

Hi @makeyourownluck. I'm just coming on here to ask how your lupus is doing. You see I've had neurological symptoms for years and now doctors think it may be lupus. That said, I am currently in sound isolation for hyperacusis/tinnitus that I made worse going to a NYE party with loud music. I didn't realize I had either of these things till the symptoms hit hard two days later and I started researching. I realized I had mild symptoms for at least a month prior to this acoustic trauma. I am ridiculously scared because all I've read is how treatment for lupus makes tinnitus and hyperacusis worse/progress.

I was wondering if you noticed any major problems. Please give me some insight.