Hi,
Does anyone else have tinnitus and/or neuropathy and blurry vision along with the vasculitis? If so.... Do you think it is because of the vasculitis or the meds (prednisone, methotrexate, or aspirin81, etc.) What do you do about any of it? All the ringing. buzzing, burning, tingling, and blurring is literally driving me nuts!
Hi London37, Sorry to read you're struggling. I have tinnitus too, it's mostly a low hum with me and I know what you mean about it being distracting. I have mentioned it every time I have an appointment and have been told it can be due to having high blood pressure, prednisolone side effects, ENT symptoms/scarring and stress. I mostly ignore it, if i don't have any other symptoms, as I haven't found anything which takes it away. If you have blurred vision too I would suggest you should probably get it investigated, better to be safe than sorry. Very best wishes.
Hi raspberry_tea, I think the tinnitus is a side effect of the aspirin, but all the doctors say I have to take it, so just put up with it. I've been to the eye doctor and had a through exam. They didn't find anything wrong with my eyes. Now, my ankles are swollen! I HATE this stupid disease!
Oh yes London37, there is always a daily niggle with this wretched vasculitis, some are new, some are well-known, some are painful, some are pitiful and some are darned right pathetic...I hate it too. I hope you feel better soon.
Hello London37. I have had tinnitus for quite a few yrs now, long before I had PMR/GCA so I can't blame that! Yes, it can drive you mad but it does become a liveable- with background noise. With the vision problem do check that out incase it is GCA. Good luck.
I optimist-ok, I love your user name! I had a temporal artery biopsy...results negative. That's the main reason , I hate this disease. All these symptoms , and you have to be constantly checking if it's something to do with the disease, a side effect of meds...or something new. Ugh
I've had tinnitus for years - before the vasculitis. High pitched in my case but I hardly notice it and can mentally fade it out if I do.
Hi orsen-trapp, I don't know which is more annoying...the tinnitus or the neuropathy in my feet. I'm glad you can fade it out. I'm trying. Some days it is quiet, and some days quite loud.
Hi,
My sight would be come blurry and I would lose the focus on the things I was looking at like computer screens and books before I started my treatment. It was one of the questions my consultant asked me when we first met. It was due to the active Vasculitis. I did not have tinnitus. However there may be other reasons for what you are experiencing but I would certainly mention it to your consultant.
Hi jann, the problem is...most all of the meds I take have blurry vision as a side effect so no body knows where it comes from. It happens mostly when I read.
John suffered with vision problems and tinnitus for about 5 years after being diagnosed but only occasionally, now. Certainly talk to your doctor who treats you for your vasculitis about this problem
I've had CSS for 2 yrs 2 mths and had tinnitus for about 30 yrs before that, so it definitely is NOT caused by pred, but may be CSS related but at a very early stage.
As it happens, as I taper the pred (now 10mg), I'm sometimes aware that it has stopped. In fact as I'm writing this right now ... it has STOPPED ... yippee! So what is that all about then? It 'may' be that as my immune system starts to calm down, the tinnitus is starting to stop ... I hope so, but who knows with vasculitis?
Hi jontyw, I'm on 4mg/2mg Pred. now....tinnitus still going strong. I,m glad yours has stopped. That is encouraging!
Thank you all so much for your responses. I will reply more...later. My eyes are blurring so much, I can hardly see . When I stop for a while, they clear up. One doctor said it may be due to cataracts which the Pred has made worse.
I've had a slow progression of hearing loss for about 4 years and the last 2 years I have suffered from a low hissing sound in my ears. My consultant said it is tinnitus and related to Churg Strauss Syndrome.
Hi, ever since I was diagnosed I have had tinnitus, very dry eyes and also being disoriented at times. I started taking Betahistine 16mg three times a day. It has helped a great deal with the dizziness and tinnitus. Not 100% but far better than before. As for the eyes I use 0.3% Hypromellose eye drops. The Ophthalmologist told me to use it, as steroids can cause dry eyes. Hope this is helpful to you.
Thank you Basil133, I will look into the eye drops. I have always had a feeling that it might have something to do with the steroids. But, I'm on such a low dose now, things should be improving. Maybe it will just take time.
I take plaquenil but no steroids. I have an inhaler to help with my breathing. I suffer from occasional tinnitus and bouts of vertigo. I have sjorgrens which causes dry eyes and mouth and use viscotears gel for my eyes, my sinuses are always inflamed and sore so I take celebrex or naproxen for that, I don't take anything for the tinnitus but I just stop still and wait, while mentally blocking the noise and it usually passes in a few minutes (luckily) and stugeron has been introduced when my balance causes me to be dizzy.
I'm due to see my GP in August and my rheumy in October but the vertigo and high pitched tinnitus are relatively new and the dizziness can be dibilitating, I've been working part-time in an office for almost 3 years and the only time off I've had in that time due to illness was a few days in the last few months due to being dizzy, I have learned to deal with it for now anyway.
My eye sight has deteriorated over the last few years and I am finding it harder to read without my glasses but it's difficult to know if that and the tinnitus are part of the vasculitis or just part of the aging process (I've just turned 50).
Tinnitus can be caused by ear wax, aging, vascular disease or medication so finding the cause will help find what might help alleviate some, if not all, of the symptoms.
Make sure you tell whoever manages your regime of your symptoms.
Hi AllyG2013, I'm so sorry you have all those things to contend with. Do your doctor's find any solutions. My doctors know all my symptoms, but they can't find what is causing them. They just say "idiopathic". Grrr
They say it's difficult to know if it's 'complications of my condition' i.e. vasculitis or something else, not very helpful. GP tends to chat, give me my repeat prescriptions for 6 months and say we'll wait to see what rheumy says. I have blood tests once a year before seeing rheumy who has brief chat then usually sends me on my way saying 'keep taking the meds' and I'm none the wiser. I've learnt to manage my disease myself as best I can.
I don't give in, I'm one of life's fighters and survivors so just keep on going, one day at a time. To be honest I should probably hassle them more and go in more often but manage as best I can because the stock replies (as above) do nothing to raise my morale, quite the opposite.
I'm currently suffering a really painful bout of joint pain and my throat is so dry it's hard to swallow but I'm due to see GP in August so will chat to him then.
I agree with Raspberry tea - eye sight problems can be a problem with vasculitis but it is also a known side effect of prednisolone. I regularly experience this after a few days of starting a course which I am on intermittently (I have to treat 'flares'), so I know that is the reason in my case. It is something you should get checked out. Maybe start at the opticians to save the GP suggesting you go there. 
They are listed symptoms of GCA (giant cell arteritis) which is a vasculitis. But pred can cause blurry vision too. I doubt it would be due to a cataract if it comes and goes - what a strange idea, once a cataract forms it doesn't suddenly unform...
Several doctors have said that the blurring seems to do more with meds or cataracts than the vasculitis. Apparently the meds made cataracts grow faster. Whatever it...it's very annoying.
I've had tinnitus since my vasculitis symptoms began. There are many reasons to have tinnitus...including neuropathy from vasculitis. But there is a long list of meds that can cause tinnitus. Mine finally went away after I was able to stop aspirin and taper down the prednisone. I thought I had permanent ear damage!
Blurred vision is also a very general symptom. You could have a real eye problem or just need glasses. For that, you need to see an eye doctor for an exam.
Hi London37,
There probably isn't enough medical evidence that the various supplements that thin your blood, like Ginko, are effective enough for you. So they have to go with something more proven. At least it's good to know that the tinnitus will likely go away once you get to stop the aspirin. I also have the gene mutation that blocks the metabolism of Plavix to its active form...this causes havoc with a lot of other medications, too. (Good for your doctors for checking that out!) In my case, my doctors stopped the baby aspirin and put me on low dose heparin injections because they discovered I have a clotting disorder due to high Factor VIII levels. My rheum tells me vasculitis is associated with high Factor VIII levels. It seems to just go on and on and on....
Not aspirin in my case - had tinnitus before diagnosis and it's no worse now so can't blame the meds!
Hi orsen-trapp, What do you think caused yours?
No idea, London - been there for years along with not always hearing high pitched sounds. Must go and get hearing checked one of these days ... but I spend quite enough time in assorted waiting rooms these days without adding yet another investigation to the list 
Hi TaraBella, Yes it does just go on and on...sigh. I was onPlavix for a while and didn't have tinnitus. It seemed to start when I started taking the aspirin. Surely there is something else I can take. I am going for my yearly check up tomorrow. I am going to beg and plead for her to let me try something else. I hate to go out on my own, but I can't stand this buzzing much longer!
London37
Is it okay to ask which type of Vasculitis do you have? I have tinnitus, too. It's so dreadful!! It's nice to know that we all have this, somehow 
I was on Plavix for a while also.
Hi Lancrose, I have inflammation in both subclavian and right vertebral arteries. So they just call it unspecified arteritis. I thought maybe the stenosis in the vertebral artery was causing the tinnitus. But the neurologist said he didn't think so. My GPI is sending me to a hemotoogist to see if they can find a more suitable blood thinner than aspirin. I think the aspirin is causing it. But I guess we' ll find out. Do you take aspirin? When did your tinnitus start?
Hi London37; my symptoms are a bit like yours. I've had Churg strauss vasculitis since 2007. I developed blurred vision suddenly in my R eye about 2 years ago, eye hospital said it was cataracts from the prednisolones, I've had neuropathy and neurpathic pain since 2007, finally I had some sort of ear infection or painful vasculitis in my ear around xmas 2014 and took doxycycline for it (nurse thought it an infection), and pow! -I suddenly got tinnitus like the sound ("hisssssssssssssssssssssssssssssss!!!") of escaping compressed air, + even more loss of balance, + loss of all high notes in the affected ear. Anyway, ear doc organised an mri to see what happened in ear and ear nerves, nothing was found there but they did find a nice little pituitary adenoma whilst having a nose around the scan, so keeping an eye on that... it can affect the optic nerves if it grows too big. Damn, it's one challenge after another at the moment.
Keeping busy, listening to music or fixing the shed roof keeps the tinnitus at bay a bit. Worse when I'm tired. Which is quite often. I find the pregabalins for the pain work fairly well but they DO knock me out around midday.
All the best
Rob
Hi tintinrob, You describe the sound perfectly! Do you think the doxycycline caused the tinnitus? I think I'm trying to find some cause/effect for the tinnitus, the eye problems, and the neuropathy. But, from all your replies, I can see its more complicated than I thought. It's like trying to find out which came first...the chicken or the egg. I feel so sorry for all of us. I wish I was smart enough to figure it out. The doctors don't seem to know what to do except throw more drugs at us, which just causes more problems. It's maddening!!!
Hi London 37, Hope you're feeling OK!
Re your question, I think it may well have been the doxycycline that caused the tinnitus as it is cited as possibly causing it on the 'side effects' bit of the label. I'd taken it several times before, mostly for chest bugs, without this problem so maybe it just likes to kick you when you're down. I'm going to book an eye test, I think the pituitary thing may be having an impact on my vision - looked through binoculars and my R eye seems to have a shadow area in the middle of the lense. It's not the binocs as they don't do it to my L eye if I look through the R side eyepiece with my L eye. I think maybe the binocs show up vision damage by some way the light is brought to a focus in the eye. Speaking of damage, doing the shed today, I'm a bit slow and clumsy, so ladder slipped and I took the skin off the ball of my hand on the sandpaper-like felt. Took my mind off the tinnitus alright but i wouldn't recommend it ;-]
RE the 'doctors throwing drugs at us' - I guess this is true to some extent but I suppose they are also in the invidious position of having to stick to the script to avoid being sued for trying out something untested... I have to say, I've made the most improvement in the last 2 years after starting high dose vit D3. I've stopped the lungs declining further, (Vit D3 has been shown in a few trials to help reverse the supposedly irreversible COPD). A reflex in my leg has returned so it may be sloooowly helping the nerve damage too (again, supposedly irreversible if no improvement after a couple of years) . I have rituximab once a year, but a few weeks after taking it the blood counts are back to normal (eosinophils should be suppressed) so that's prob not that effective for me. But the best thing they've got. Do you have it for your vasculitis?
All the best
Rob.
Hi Rob, Sorry not to have answered your last post, but I got lost in the thread and just now found my way back. lol Hope you're feeling better and haven't been on any sheds lately. How much Vit D3 do you take? On my last blood tests my D3 was low normal. So I started taking 4000mg. The fact that it's helping you is very encouraging. Its been rumored to help with a lot of ailments. Doxyclicline, on the other hand, is wicked! I had to take it not too long ago for an infection (caused, I'm sure in part, by methotrexate.) The doxy caused the tinnitus and the neuropathy to get mch worse. And the eye doctor said that my eyes are blurring because the pred is causing my cataracts to grow more rapidly.( What a Merry-G0- Round we are on!) No, I dont take rituximab. I only take low doses of Medrol, Methotrexate and Aspirin81 at the moment. I have more trouble with the drugs than I do with the disease. Hope you found out what is causing your eye problems. Do you know if most of the people on this forum are in Northern Europe? Just curious
London37 Thank you for your helpful reply. It all started around a few years years ago when the illness began. The problem about this condition (V) is that you don't just get inflammation in one artery or two at the most, it affects anywhere and any vessels (probably capillaries as well), potentially. It's a multi-system disease, which affect vision and hearing and more. Considering this, if someone does not have tinnitus with V diagnosis, the person was either treated quickly when the disease first begun and made the full recovery or just being lucky. I wouldn't be surprised if you have got V and you're far more likely to have tinnitus / vision issues (based on threads/posts). They seem to go hand in hand. I did not take aspirin before and I had tinnitus. I also agree that hearing loss is associated with tinnitus. It's an excellent move to consider an alternative blood thinner than aspirin. I'm due to see my Rheumy to discuss myself. Good luck!!!
My ENT consultant at the Royal Brompton in London, who is a professor in his field told me straightway that my sinusitis and tinnitus were linked to Churg Strauss Syndrome. It is refreshing after 9 years to have positive doctors. It could be caused by something else but in the regimes of statistics and probability it is more than unlikely to be caused by the vasculitis disease. The important thing is the treatment and management going forward and for doctors not to dismiss the symptoms.
HI Rowmarsh, What kind of treatment are they proposing for the tinnitus? I have been to several ENTs and they either say high frequency hearing loss, and try to sell me a $6,000 hearing aid, or idiopathic. The neurologist said it probably is NOT caused by the Vasculitis. I hope they find something to give you relief. If it works, please let me know what it is. Wishing you good luck!
What do you think are the unmet needs in Vasculitis? 
Hey guys worried question about sores in mouth and raised rheumatiod factor, 
A question about fatigue
