Woke up with excruciating earache tonight.

[drz]

Went to ER as it felt like ear was about to burst. ER doctor looks in ear and says he sees no sign of infection. Ear drum not red or swollen. This is ear I lost all hearing in at start of Wegener's disease but now I am hearing loud buzzing and chirping sounds in it,like a swarm of insects The tinnitus had been relatively quite till tonight. I haven't felt anything generally in this ear since i lost the hearing a year ago.

Also just started a prophylactic antibiotic tonight a few hours early to try prevent me from developing pneumonia since I have lung damage already, am on prednisone and Immuran which makes me susceptible to getting another infection. Another family member is also being treated with antibiotic now for pneumonia and is complaining about pains in sinuses and head. I wonder if we might be sharing a similar infection since she also has low immunity due to lymphoma. The pulmonary doctor saw no evidence of pneumonia in my lungs on X ray or examination when he saw me earlier today. He said I might have bronchitis though and recommended the antibiotic.

But this ear ache is worst pain I have had in past year. He said I could be developing an infection but without seeing any evidence he was reluctant to start me on another or different antibiotic. This is another example of having to wait and see. He did suggest seeing ENT doctor this week if pain persisted and said it might look infected then. He also thought the pressure might somehow resolve itself and go away. I sure hope so and want it happen soon.

I took a tramadol pain bill and benadryl trying to get some sleep but it didn't give any relief from pain or help. I hear (probably feel) some strange movement or noise in throat or sinuses, but nasal passages are open. The doctor recommended gargle with warm salt water and hot packs which I have tried too. The doctor said it look like pressure on Eustachian tube was causing pain in ear and thought the cold that started last week might be cause. I did have a pentamide nebulizer treatment earlier today but don't think that has any relation to this earache since it hasn't caused any problems before.

After i got back home I checked for fever. None but then I got chills and teeth started chattering.

Has any one had any similar each aches?

[Sangye]

drz, pharyngitis, upper respiratory infection and chills are listed as side effects of pentamidine. Pharyngitis can cause your throat to swell and close off the eustachian tube. That prevents normal ear drainage. Your ears may look normal on exam but the extra fluid build-up can be excruciating. I had that a few times. It felt like someone pushed a knitting needle in my ears.

I'm wondering why your doc didn't increase your pred.

Also, the fact that you've tolerated pentamidine well in the past may not be important. Anyone can develop a sensitivity to a drug very quickly.

I hope you feel better very soon, whatever is the cause! :hug2:

[gurinbasra]

drz, I feel for you! I lost all hearing out of my left ear 3 years ago but I've never had any other issues with it, even when I've had a Weggie flare that affected the other good ear. I wouldn't be surprised if like what Sangye said, there is an infection and you should take the advice to see an ENT dr - perhaps one that's familiar with your Weggie history. I always think that for those of us with hearing loss, it's so important to have a good ENT dr who can determine the cause of the problem being either an infection or a Weggie flare (which is usually followed by an infection!)

Keep popping the pain killers and hang in there.

[gurinbasra]

Oh, just had to add, that's another good point Sangye made, I know from experience that if the antibiotics don't work, see what happens with an increase of Pred - that'll be your answer. Happened to me back in 2009, all the antibiotics in the world didn't help, and then as if magically, my ENT increased the Pred and within days, I felt better and better.

[Chris G]

Drz-
I've had this experience as well. It happened after months of eustachian tube dysfunction. I had fluid build-up behind the ear drum, and fluid througout my mastoid bone. Strangely, that day, and a few days prior, my ear hadn't really been bothering me much, except for the fact that the hearing was impared on that side. The "attack" came on suddenly, at bedtime. I still have trouble describing it......it was excruciating - it literally seemed violent. It was like there were tiny little hands inside, squeezing and twisting my ear canal - it went on all night. There were horrible screaching and pulsing noises. Then the ear drum perforated, and fluid began pouring out (yes it was gross, sorry). I had extra strength vicodin and darvocet on hand. I took some of each - as many as I dared, and got no relief at all. Halfway through the night, I couldn't even touch the outside of my ear without causing more pain. I was up all night, mostly crying from the pain. The next day was my first appt with my new rheumys, that had been booked for 6 weeks. The pain was so great that, although my husband had just had knee surgery the day before (left knee), I had to ask him to drive me to my appointment. I could barely hold my head up. We were quite a sight that day.

I've had ear infections before. There's no comparison - this was altogether different.

[Jack]

The eustation tube trouble that I have becomes much worse and turns to ear ache when I try to lower my Pred dose. In a similar way, if it starts to bother me more than usual I know that a short period of increased steroids will get me through. This is a very rare situation for me so is a viable form of treatment, but it would not do in the longer term.

[chrisTIn@]

Sure hope you find the cause of your earache drz, and the way to treat it best.
Good luck, hold on!

[drz]

Drz-
I've had this experience as well. It happened after months of eustachian tube dysfunction. I had fluid build-up behind the ear drum, and fluid througout my mastoid bone. Strangely, that day, and a few days prior, my ear hadn't really been bothering me much, except for the fact that the hearing was impared on that side. The "attack" came on suddenly, at bedtime. I still have trouble describing it......it was excruciating - it literally seemed violent. It was like there were tiny little hands inside, squeezing and twisting my ear canal - it went on all night. There were horrible screaching and pulsing noises. Then the ear drum perforated, and fluid began pouring out (yes it was gross, sorry). I had extra strength vicodin and darvocet on hand. I took some of each - as many as I dared, and got no relief at all. Halfway through the night, I couldn't even touch the outside of my ear without causing more pain. I was up all night, mostly crying from the pain. The next day was my first appt with my new rheumys, that had been booked for 6 weeks. The pain was so great that, although my husband had just had knee surgery the day before (left knee), I had to ask him to drive me to my appointment. I could barely hold my head up. We were quite a sight that day.

I've had ear infections before. There's no comparison - this was altogether different.

Thanks for writing up my story so well.

Three hours after I got back from ER the ear drum burst and drainage began. It was clear sticky stuff at first but evolved into ugly bloody junk that indicated an infection. My ENT of long standing who has seen me over a hundred times due to my history of ear infections and surgeries saw me this morning and sucked out the infection. That also hurt like H--l but it feel much better almost immediately. He order some antibiotic drops to put into ear through new hole in my ear drum. He also gave me a prescription for numbing ear drops but told me to wait a day before filling it since he doubted I would need them. He was right and I finally got some sleep after lunch. The ear is still draining but the pressure is gone along with most of the pain so I feel much better. The ENT thought the infection came from blocked Eustachian tube from the cold I caught. He said most of the people he has seen with Wegener's have perforated septums and Saddle Noses but I was lucky to not have any sign of that yet.

The past year has not been any picnic but this pain was off the chart. I rated it a 12 on scale on 1-10. The noises before it burst sounded like my sinuses were cracking. I have great empathy for anymore who has had to suffer through such an experience. Thanks to all who shared.

As an aside the lung doctor I saw yesterday thought I might be able to get off the pentamadine since my prednisone has been tapered to under 10 mg at present and I am off the Cytoxan. I will discuss this at my next rheumatologist appointment.

I asked the ER doctor if he could guarantee that my ear drum would not burst. He said he didn't think it would but he couldn't guarantee it. He hedged and recommended I go back to my ENT doctor if pain persisted and said it might very well be infected at that time. I don't know if many doctors would have lanced the ear drum to relieve the pressure before it broke and that is only ting that could be done to relieve the pain.

[Sangye]

Yeech, so glad you got relief drz! I hope it heals up quickly.

[Jack]

Horror stories! I hope mine does not turn into something as bad. I've never imagined before that a cold could cause such problems!

[Chris G]

I'm so glad to hear that you're feeling better already!! :smile1: But, ouch! I can't imagine the pain of having that sucked out!

Yes, 12 on a scale of 1-10 fits accurately. The hole in my eardrum has healed, but I have the beginnings of eustachian tube dysfunction, as I lower my pred. I will forever be vigilant where my ears are concerned - I absolutely can not go through that again. It could have been avoided if I'd had an ear tube placed prior to my diagnosis. Lesson learned.

I hope you sleep like a baby tonight.:thumbup:

[elephant]

It will get better, I had ear pain on and off for years. Still have ringing in my ears and I'm in remission.

[drz]

My left ear drum burst and began draining on March 19th. The discharge was clear with no sign of infection. Saw my ENT today and he said both ear drums had healed, but both had fluid behind them. My lab work indicated marked increase in inflammation markers which is expected with ear infection, bronchitis, and sinus infection. The question now is did the Wegener's cause the infections with increased mucous from nasal and sinuses which blocked the Eustachian tubes, or did the infection come from a cold which woke up the Wegener's.

Will treat infections aggressively this week and retest next week and then adjust meds as needed. Like everyone else I hate the thought of having to go through all the slow downward taper of prednisone but if I remember pain of 12 on an 10 point scale, that will sure make it easier.

The hope is the inflammatory markers might go down again if infections clear up. This has happened to me several times with bladder infections. The good news is still no sign of pneumonia and my mastoid cavity looked clean with no sign of infection. I only have some hearing though limited in my left ear but couldn't wear a hearing aid when it was draining. Lots of practice lip reading and reading notes people wrote me. Even though my hearing in left ear is limited it sure beats trying to write notes and lip read all the time. When you are waiting in a a doctors office you have to explain to people that they will need to come get you and not just call out your name. An experience like this regardless of how brief will help motivate you to donate your old hearing aids to Local Lions Club on their next campaign for Hearing Awareness.

[Sangye]

I hope it gets better quickly, drz. If not, then you know for sure it's the Wegs dog who woke up and wants to play.

Thanks for reminding people to donate old hearing aids. I didn't know the Lions Club did that in addition to glasses. :thumbsup:

[Chris G]

Oh damn! I thought you were recovering well after the first ear drum burst. Sorry to hear it got worse after that. So frustrating not knowing whether the chicken or the egg came first - the WG or a virus. There's a another possibility you might consider. This is what my ENT said caused my ear blow-out. When the WG causes eustachian tube dysfunction (the middle ear pressure doesn't regulate), this can create negative pressure on the ear drum, which creates a sort of vaccuum, sucking fluid into the area from surrounding tissues.

So many uncertainties with WG. And so much frustration. Anyhow, I hope you're able to stamp this thing out quickly!!:smile1:

[drz]

Oh damn! I thought you were recovering well after the first ear drum burst. Sorry to hear it got worse after that. So frustrating not knowing whether the chicken or the egg came first - the WG or a virus. There's a another possibility you might consider. This is what my ENT said caused my ear blow-out. When the WG causes eustachian tube dysfunction (the middle ear pressure doesn't regulate), this can create negative pressure on the ear drum, which creates a sort of vaccuum, sucking fluid into the area from surrounding tissues.

So many uncertainties with WG. And so much frustration. Anyhow, I hope you're able to stamp this thing out quickly!!:smile1:

My ENT agrees that the fluid build up inside the Eustachian tube comes from Eustachian tubes being blocked. The blockage can be caused by Wegener's, a cold, or infection. The ER doctor thought my ear drum was imploding from the vacuum but after it burst three hours later the ENT doctor saw it was infected.

I am starting some steroid nose sprays tomorrow and increasing the Imuran to 175 mg. The prednisone will also be increased if ANCA markers are up and the bleeding in nasal passage doesn't quit.

The sinus infection and bronchitis are a little better from new treatment, less nasal congestion and the bleeding in nasal passage seems to be decreasing. But i don't feel any better yet although I was finally able to get a few hours sleep last night.

[pberggren1]

drz, I hope increasing the Imuran and using the sprays for a short time will help.

[Bren]

Have a question about sensorineural hearing loss.. I was dx with this today... my Dr don't know why it would happen.. (in other words no answers for me) ... has anyone ever get it? it came on real fast.. if you got it, was it a flare? I have a call into Dr Speck in Mayo but they didn't get back to me,its Friday so I will have to wait till Monday... In December 2010 my ears were 5/5 today they were 30/35 so I have it in both ears.. is this part of wegners? anyone have any advise :biggrin1:

[gurinbasra]

Hi Bren,

I can only think of two reasons for the sensorineural hearing loss, first is that it is the WG and second it could be one of the drugs you're on, ototoxic drugs like Methotrexate. The latter really shouldn't make a very significant hearing loss and shouldn't come on really fast, but you never know, and I know from my experience, that WG is what caused my hearing loss. I'm assuming you're seeing an ENT dr who's done some hearing tests, does this dr know you have Wegener's, did he/she give you any explanation on the hearing loss or request an increase in the Prednisone? What have your WG symptoms been - do you think you're having a WG flare, if not, maybe it is due to the drugs? All I can say from my experience is that it's really important to have a ENT and WG specialist on board with each other, they can help determine why you're losing your hearing but it's something you need to act on real soon.

Please take care of those ears, sensorineural hearing loss is permanent and it's a complete life change - on top of the WG health issues. Nothing like going to an appointment and not really hearing all the advice and information the good dr is telling you and worse, not being able to hear all the loving and positive words of your loved ones and good friends. It would break my heart to see another person go through this, so please get it sorted out really soon. If it is the WG, by increasing the Prednisone you will see an improvement in the hearing (for me it would take 4-5 days to see a significant change) - to some extent, but then the key is to get to the beast (WG) into remission.

Good luck and please give us an update.
Gurinder

[drz]

Last time I posted a positive note on how well things were going the Wegs roller coaster took a big dip and I ended up starting this thread. So at the risk of jinxing myself again, I will say although it has been a rough month or so but I think things have turned upward again. The antibiotics, ear drops, nasal spray, increase in Imuran and eye drops seem to have helped. The ear infections, bronchitis, sinus infections, nasal bleeding seem to have cleared up. The eye infection is getting better according to the eye doctor and another week of antibiotic drops should clear it up he thinks. At least it doesn't look like a Wegs attack on the eye so that is good news.

My labs all improved although the inflammation markers are not yet back in normal range, they are getting close on CRP and I only had one normal ESR result in past year but with my diabetes being in poor control from prednisone and infections I may never get a normal ESR score. My ANCA scores were negative, HGB as high as I have had in the past year, liver functions in normal range, and no problems suggested by rest of lab results. I am still at 9 mg prednisone and might try tapering lower again and my azathioprine is at 200 mg and I seem to be tolerating it so far. I see my rheumatologist next week and will learn what he recommends next.

Right now I am hopeful this spring and summer will be better than last year when i spent those seasons in the hospitals and rehab facilities. It has been a rough year since my diagnosis last April but like my friend said "if you can survive the treatment, things do get better" usually. Of course there is no getting rid of the damage from the Wegs like lung damage, kidney damage, deafness, balance issues from middle ear damage, poor endurance and limited walking skills, but other than these minor problems life is good again. :biggrin1:
Spring is here and summer will come again and I hope to enjoy more of it this year.

My goals or hope now is to work up to walking a mile at a mile an hour and taper the prednisone down to 5 mg or less if possible.

May we all enjoy peace and harmony and good health until the next crisis hits.:smile1:

[elephant]

Sounds like your on your way to better health Drz. Take your time tapering the prednisone. This summer you are going to walk and enjoy life.

[Sangye]

I hope your doc says everything is going well. And I hope you're able to build up and get strong again. Soon. :thumbsup:

[DEE]

Fingers crossed for you Drz that things are moving forward for you now.

[elsawind]

Drz
We feel for you and we know that those visits to the ENT are painful but it is worth it when you leave with much relief. Ask your doctor to replace the pentaide with Atovaquone (Mepron) the one I mentioned to you, it is very expensive more than $2,000 every 42 days, but no side effects at least for my husband. If your insurance covers it great!

[drz]

I saw my rheumatologist yesterday and am happy about what he said. I was diagnosed a year ago and it has been a rough year but he is very pleased with my recovery from then and from my last flare. He wants me to resume attempts to taper the prednisone and I will go down to 8 mg a day starting next week. I will also try going off the steroid nasal spray since the nose looks good now with no signs of Wegs or infection. He confirmed what others have said that even when the Wegener's is generally under good control the Wegs often smolders in the nasal and sinus area and this doesn't mean that a more aggressive treatment is warranted.

He said that because of damage to the sinuses and nasal area I will be prone to develop sinus infections and have to watch for this. The infections will probably cause the Wegs to flare like it did last month and this might happen two or three times a year. Treating those infections will generally reduce the Wegs activity. If the Wegs resumes in the lungs or kidneys, then we will treat again with RTX and or plasma paresis and maybe an increase in azathioprine to 250 mg. I am currently at 200 and was increased from 150 during last flare. He said RTX lasts a long time and I might still be getting some benefit from last treatment even though that was almost a year ago. I was happy to know he has a contingency plan for treating Wegs if it becomes active again.

He told me it should be safe for me to work on trying to improve my general conditioning to increase my strength and endurance and some improvement was likely.

He wants me to stay on pentamadine treatments every month for now cause PCP only has a 50% survival rate in healthy people. Since I have diabetes and lung damage, my chances of surviving it would be so poor no bookmaker would give any odds on it.

He said he was pleased with my over all health given my history. He told me I will never be the same as I was before the Weg's which wasn't that great due to years of diabetes and its complications. He thought it would be OK to cut my labs back to once a month which is the lowest frequency I have been on in the past year. If I have any symptoms then extra labs will be done.

I feel I am taking some risk by posting this cause when you say things are going good things seem to quickly change and the bottom seems to drop out shortly. But I don't think this rule is a 100% one and probably more of a superstition than I need to try over come, right?:unsure:

[Sangye]

That's great news, drz! :thumbsup:

Your doc sounds like he's on top of things and has a solid plan for all contingencies. And yes, rtx can work up to about 12 months. Glad to hear you're starting to climb out of the hole the Wegs dog buried you in. :biggrin1:

[chrisTIn@]

I don't think this rule is a 100% one and probably more of a superstition than I need to try over come, right?:unsure:

Yeah. Right. :wink1:
Wonderfull news, drz! :thumbsup:

[Psyborg]

Glad things are going well for you DRZ. Don't worry...it can't always go wrong after it goes right a while :) Though I have to say I can totally get where you are coming from.

[Chris G]

That's great news DrZ! I have my fingers crossed for you - surely that will guard against any ill effects from speaking your good news out loud. :tongue1:

[delorisdoe]

I feel I am taking some risk by posting this cause when you say things are going good things seem to quickly change and the bottom seems to drop out shortly. But I don't think this rule is a 100% one and probably more of a superstition than I need to try over come, right?:unsure:


I CAN'T HEAR YOU I CAN'T HEAR YOU...there now it doesnt matter

leigh