Ear Problems?

[Stephanie78]

As some of you know (as listed in a previous post several weeks ago) My husband has just this year (A few months ago) been diagnosed with WG. He has been under the care of a pulmonary doctor (Luckily his lungs look AMAZING however he will still be under his care to make sure there is no changes), a ENT (who was incredible enough to know to test for WG from the start BUT who's bedside manners really STUNK), and a rheumotogloist who is AMAZING!

He goes back on Wednesday June 1st. He has been on Prednisone for almost a month, and it seemed to be working (He could breathe and when he blew his nose STUFF CAME OUT!). The he started having what we thought was a cold. (Sneezing, Coughing, Nose REALLY stuffed up, runny eyes and a little earache). It was really bad on Monday and Tuesday and Yesterday seemed to be getting a little better other then the earache. He travels and was driving thru the mountains yesterday and felt a POP in his ear, heard a gurgling sound and then had stuff run out of his ear (Ruptured Ear Drum) we have dealt with this with our daughter who has had chronic ear infections and has had hers rupture before. BUT it didn't just do it once it did it again later in the day! He said that the pressure was gone and it did not hurt AS bad. But that it is still a little stuffed up (More muffled then the left ear)
I googled (which is a bad thing and I know that but....) and it says that the ear issue is actually a sign of WG.

Have any of you had a similar symptom and did it cause hearing loss/damage?

Stephanie

[Stephanie78]

Oh AND...The Pred has left his muscles EXTREMLY sore. Sore to the touch! Definitley makes my heart hurt for him...

[Sangye]

Ear involvement like that is very common with Wegs. Is he only on pred?

[sadpixie]

WG did affect my ears, especially the right one. It started with some stuffiness and eventually pain and loss of hearing. I ended up having an ear tube put in before being diagnosed with WG and having a mastoidectomy. My hearing did not resolve after starting WG treatment. Is your husband on anything aside from prednisone? I didn't notice any improvement in my ears or sinuses until I started on Rituxan.

[Stephanie78]

He is only on Prednisone. He is going to a specialist who deals with WG. I was able to make ALL appts except for this last appt where they put him on the Pred. He has another appt on Wednesday which I will attend. I'm not sure IF the doctor mentioned any other medicines at the last visit or not, I do know that he only prescribed the Pred.
He thought he had a cold. Sneezing, watery eyes, cough, dull earache (He had been on Pred for 3 weeks and it DID seem to be doing the job). So when these symptoms started, since our son had just recouped from a horrible cold with same symptoms we ASSUMED it was the same thing. He has been traveling in the mountains this week which has not helped at all! It was during this time that his ear drum ruptured. Last night when he called he said he could hear me perfect out of his left ear BUT it was muffled a little in the right (Which is the one that ruptured OR popped and started draining stuff twice yesterday). He said today it was a little better.
I have a call into his rheumy. I'm not sure if he should be the one to talk to OR his ENT. I'm so frustrated! This is the FIRST time of having issues with his ears. It has been Sinuses ONLY. And those symptoms have not been happening for long. Like I said he was diagnosed within 2 weeks of first going to his doctor. First he gave him a antibiotic (Since it did seem like sinusitis) and at the recheck Appt it was no better so they did blood work for WG and then a biopsy of the sinuses so he is extremly lucky that the caught it so early.

[Chris G]

I also had ear trouble. My right ear was plugged for over six months, and eventually became infected, and perforated (exploded is more like it). So much fluid had built up, that it had filled my mastoid bones as well. Fluid drained from the hole in the eardrum for about 10 days. I had pretty serious hearing loss during that time, and for about 2 months after, but my hearing has returned to normal.

[Stephanie78]

Bless you Chris. Although I know that there are serious life long damages that can happen, and I totally understand that I don't know my husbands prognosis (I am neither a doctor or God) It is so reassuring to hear someones story that had a positive reaction.
I struggled with chronic ear infections as a child and remember the pain and discomfort. But as a child I could lay on the bed with a heating pad. As a grown man with a family, my husband goes full force to provide and work, so he is dealing with it while trying to make a living. I'm wondering if the changes in altitude didn't also make it worse (going thru the mountains)

Thanks for the replies guys. It helps to know there are people who can relate and that he (we) are not alone.

[BrianR]

Hi Stephanie.

Have a look at my wife's blog and you will see that her WG symptoms all started the same as your husbands. Ear and sinuses. Here is the link Weggies Unite: How it all started (http://weggiesunite.blogspot.com/p/how-it-all-started.html)

As others will tell you, prednisone is not enough, It needs to be combined with cyclophosphamide (Cytoxin) or Rituximab (Rituxan) to combat Wegs.

Sinus are connected to the ears so if there are sinus issues he will feel it in the ears as well as the sinuses become more inflammed and full of stuff.

Marta (my wife) has a deep cold right now and her sinuses are full and her ear drum burst the night before last. She will likely get tubes put in her ears next week.

[pberggren1]

Hi Stephanie.

Have a look at my wife's blog and you will see that her WG symptoms all started the same as your husbands. Ear and sinuses. Here is the link Weggies Unite: How it all started (http://weggiesunite.blogspot.com/p/how-it-all-started.html)

As others will tell you, prednisone is not enough, It needs to be combined with cyclophosphamide (Cytoxin) or Rituximab (Rituxan) to combat Wegs.

Sinus are connected to the ears so if there are sinus issues he will feel it in the ears as well as the sinuses become more inflammed and full of stuff.

Marta (my wife) has a deep cold right now and her sinuses are full and her ear drum burst the night before last. She will likely get tubes put in her ears next week.

I am so sorry to hear this Brian. I wish Marta would have gone to see an ENT sooner about this. I know this has been going on for quite some time but she was afraid to get tubes in. Totally understandable. I hope she can get in to see a good ENT soon.

[Chris G]

Stephanie - Yes, it's likely that the pressure from driving at higher altitudes caused his ear to burst. I do hope he recovers his hearing as I did.
I still have a little bit of ear drum "thumping", but no pain or pressure at this point. I've been on wg drugs since the end of November.

I think people mentioned this to you in an earlier thread, but I want to reiterate, that pred alone is not proper treatment for wg. It will help with the symptoms, but it will not offer any sort of remission. Oops - I see that Brian is on the case here too. I won't repeat what he said.......you get the idea. Please be sure that your husband is seeing qualified vasculitis specialists. Ordinary rheumatologists are not knowledgeable enough about wg, to treat it properly.

Good luck & let us know how is appt goes next week!

[marta]

Not afraid Phil, just averted to the idea. Also hopeful that the RTX will help my Eustachian (sp?) tubes unblock by bringing down the inflamation in my head. The tubes (and side effects of them) lasted for at least six months last time and I didn't like them. The pain before the ear drum 'popped' was pretty good, but it's been better since the incident. My hearing is quite poor right now on that side. Oh well. The good thing with this cold I'm sportin' right now is that I totally sound like a Rock Star. With my new short curly chemo hair and bags under my eyes, I also look like one - the older, harder partying type of rock stars.

Stephanie, as I've said in other threads, I hope your husband gets to a specialist soon because right now they are not treating the disease and this is why he is getting new symptoms rather than having his existing sypmtoms disappear with nothing new creeping in. With just pred they are treating the symptoms (inflamation) not the disease. The disease right now is doing it's nasty thing underneath with the symptoms masked on top and it's causing more damage in the long run. That's just my two cents and I'm not a doctor, but I have heard doctors who aren't familiar with WG tell me that pred alone is treating the disease, and I KNOW THEY ARE WRONG, because of what I was feeling going on underneath. Also before coming up with the combo of pred + chemo, people died. As Jack has said in other threads, they have tried pred alone, and chemo alone, and it didn't help people. It is only with the combination that you can nip it in the bud.

[gurinbasra]

Hi Stephanie,

My WG issues have pretty much been all ears (and sinus) and I have permanent hearing loss. I would urge your husband to go back to the ENT guy who diagnosed him to find out the issues the WG has caused. The Rheumy can treat the WG but he won't have the expertise to understand what's happened to the ears so it's just as important to get an ENT guy to treat the ENT issues/damages caused by WG. They will both need to work together.

Also, sometimes what starts out as a cold, flares up the WG, and we all know that when "normal treatment for colds and infections" don't work and a bump up in Prednisone does, it's WG dog. As the others have mentioned, treating WG with Pred is not enough, that only masks the symptoms.

Good luck

[pberggren1]

Marta, I hope you get feeling better soon and the rock star feeliing and look goes away too. I remember when my eardrum popped. That is the most intense pain I have ever experienced.

[elephant]

When my ears act up that is when I know something is brewing. For some reason Bactrim DS does the trick for me. When I was diagnosed in the beginning the only treated me with prednisone because they thought it wasn't that bad at the time. So stay on top your care and make sure you see a WG specialist or GPA specialist.

[drz]

Marta, I hope you get feeling better soon and the rock star feeliing and look goes away too. I remember when my eardrum popped. That is the most intense pain I have ever experienced.
In March I rated the pain as a 12 on the 10 point scale when I went to ER at 2 am. This was before it burst on the ear that is totally deaf. On the ear with 10% hearing it barely registered, probably because the nerves there are dead from several previous surgeries. It did feel better after it drained and ENT sucked the infection stuff out. Anyone having ear pain has my utmost sympathy and a good ENT doctor is worth their weight in gold when they give you some relief from the pain. It is necessary to treat the infection and the related WEGs which may cause the infection or result from the infection. They both need treatment at same time.

[pberggren1]

I have had no pain in my deaf ear.

[pberggren1]

Well, I should say my left ear cause that was my first deaf ear. It was my right ear with the pain.

[Stephanie78]

Ok. He is only on Prednisone right now. He goes back on Wednesday June 1st. For the record his rheumy does specialize in WG which is why we decided to give him a try. I called the rheumy yesterday (My husband is in Indiana for business and we live in NC) because I had no clue who was suppose to deal with it him or the ENT. They advised me to contact the ENT. They called him in some Ear Drops (To try to help with the pain while he is out and over the weekend) He will go see them next week to make sure the ear looks ok. They said it could be due to a cold (Which they and the rheumy agree the symptoms are VERY confusing because it sounds like a horrible summer cold, however it also sounds like it could be the WGs) They did not want to put him on an antibiotic. They stated that with WGs sometimes you have to be careful with overmedicating (With Antibiotics NOT with meds that treat WGs).
After speaking with the Rheumy (He was the one who called me back) I asked why John was only on Pred. He explained that although they had a positive biopsy that he wanted to do futher blood work (Which he did a large panel that he says covers EVERYTHING possible) and for the cultered UA to come back. He said that he will have those results for us on Wed and that THEN he WILL be putting him on other medicines. The Pred was just a starter but assured me that he will be on several other medications,(and will be given the prescriptions on Wed) but that he wanted to have the test run first before he chose the method of medication he will use for him. Like I stated earlier we will find out more about his kidneys then as well.
Then when I spoke with the ENT nurse she informed me that IF he continued to have problems with his ears that they would probably look into putting tubes in. She said that he will go in next week to make sure the ear drum is healing on its on if not they will have to go in a patch it up.
It's so frustrating. Our son had a horrible cold a little over a week ago. John has had the exact same symptoms this week (Nose stuffed up more then before, sneezing, Coughting **BTW his chest X-rays showed that his lungs are in PERFECT condition and unharmed according to the Pulmonary Dr** and itchy watery eyes). He later this week his ear started bother him (but it was ONLY while driving thru the mountains). He is exhausted today. He is on his way home and his exacts words this morning when I called were "THIS EFFIN SUCKS". He is definitley at the "Angry" point.
So, we have no clue if it is a cold making it worse or if it is the WG.

[Stephanie78]

I also have to say again, how thankful I am that he was tested for WG right away. There was never a misdiagnosis or mistreatment of any type. So we are so very greatful that he didn't have to go thru what most go thru before being diagnosed. We do have referrals for Chapel Hill and John Hopkins. Both of which he can NOT get in until the end of July for John Hopkins (As a new patient) and the 2nd week of August for UNC) which is why we have chosen to give the Dr in Wilmington a chance. He does however have appts set up at both of these places.
So we understand how important it is to get the proper help for him. But it's hard to sit back for 2-3 months with no help at all. Does that make sense?

[drz]

I also have to say again, how thankful I am that he was tested for WG right away. There was never a misdiagnosis or mistreatment of any type. So we are so very greatful that he didn't have to go thru what most go thru before being diagnosed. We do have referrals for Chapel Hill and John Hopkins. Both of which he can NOT get in until the end of July for John Hopkins (As a new patient) and the 2nd week of August for UNC) which is why we have chosen to give the Dr in Wilmington a chance. He does however have appts set up at both of these places.
So we understand how important it is to get the proper help for him. But it's hard to sit back for 2-3 months with no help at all. Does that make sense?

When you are in pain one cannot wait months for relief so yes you need to get the best treatment you can as soon as you can. Those places though have ER services which can often get you in sooner than waiting for the appointment. Hope your current treatment is helpful and you get some answers to your questions and concerns.

[Jack]

I hate to hear these stories of delay. I lost my kidneys in the space of two weeks!

The ear and nose symptoms should improve considerably once the Wegener's is under control, but if a blocked nose is causing problems, you can usually clear it using saline irrigation. I'm sure we can point you towards the details if you think this may help.

[Stephanie78]

In a most recent post I updated our weekend. Saturday was spent in the hospital. He is now on Ciprofloxacin ,metronidazole, oxyfloxacin and vicadon. And of course his prednisone. He has not had a BM since Tuesday so he is also on fiber pills and doing fleet enemas. Long weekend. Dx with diverticulitis. Along with ruptured eardrums, nose so stuffed that he can't even blow period! Saturday morning he was in so much pain in his lower abdomen that he couldn't walk. Kidneys look great so that fear was relived. Still no bm and after talking to his rheumy we found that vicadon can constipate! Ugh! I was so livid at the fact that the ER drs not only didnt know about WG (I kinda understand that) but they could've cared less. I'm so grratful that we already had a dx due to the fact that they kept trying to dx him with other things and seeming to doubt the WG dx even though we told them we had a biopsy. Luckily his rheumy was on call and at the hospital!

Jack- he did finally do the sinus rinse tonight. Before he couldn't even get it up the nose (we think he had a cold on top of it all) after a decongestant he finally was able to blow his nose today and did a sinus rinse.

Now if we could just get him to poop! I have never been so excited for someone to have a BM before. When he goes to the restroom our daughter stands at the door and says "daddy are you pooping now?".

Seems like if it isn't one hurdle, its another.

[Thakator]

Yes, Stephanie, there are apt to be many hurdles along this path. Some are here right now and require immediate attention; some are out there in the land of potentiality and require vigelence to keep them from tripping us up. Not paranoia which says they will materialize, but vigilence to ensure that you see them before too late. That's why I write today.

You've mentioned a couple of times that your husband's chest x-rays show excellent results. Which is great, of course, but we are dealing with Wegs here and x-rays are no longer a sufficient measure of lung wellness for him. An indicator, perhaps; good for picking up other things, yes. But not reliable enough in a Wegs situation to rule out lung involvement should it ever arise in his case. Please, if you ever have reason to believe that his lungs are being impacted, do not rely on a clean x-ray report - - he will need a ct scan of the lungs. Big difference.

By way of personal example, I can say that my lungs went from perfectly clear (as determined by multiple x-rays) to filling with ground glass granulomas and internal bleeding within a span of only 36 hours - - - as with Jack and his kidneys, lung degradation can occur quickly and the symptoms for it need to be given quick attention. Unfortunately, it's usually a chest x-ray that's ordered and they are simply not detailed enough for the situation your husband might face if it ever got to that point. Others on here might attest to this same precaution and we do so not to alarm but merely to aid in your Wegs education, an education that you will need to help you through all the hurdles that are apt to come. The best to you and your husband. Ron

[Sangye]

Very well put, Ron. My lungs like to hemorrhage (as opposed to forming granulomas). Chest x-rays always look fine but the CTs are horrible.

[Stephanie78]

He has had two CTs the latest being Saturday while he was in hospital and they showed clear lungs.

[Sangye]

That's great, Stephanie.