Help help help

[Boonickel]

I was recently diagnosed with WG. As of right now it is in my sinus. My 'flare' ups are my ears basically look so enlarged they are going to pop. Like someone who stepped right out of a horror movie. Im 37 yrs old. Have had a lot of 'rare' and difficult things happen with my body. My Dr.'s have all told me I'm unique. Well heck I already knew that. :). I started the Methotrexate about 1 month ago. Just finished my 4th week of 6 pills per week. I've had 3 flare ups since starting the medicine. Spoke to Dr. today and he is going to start me on the Rituximab. I'm scarred to death. All i can think about are the bad things. Wondering if anyone is in the same boat as me.

[Debbie C]

Hi Boonickel and unfortunately welcome to our forum. I can't tolerate any of these drugs so you can't go by me but everyone else on here seems to get great results from it. However there are side effects that differ from every person mostly fatique. I'm sure others will chime in and give you there opinion. How it works for you.

[Pete]

Couple of questions for you...

Is the doctor treating your wegs a wegs specialist?

What other meds are you taking?

Latest treatment protocol used by Cleveland Clinic is 4 infusions of rituxin a month apart, high dose prednisone (60 mg/day), and bactrim. This treatment is aimed at really controlling the disease. Methotrexate is introduced after rtx as a maintenance drug while pred dosage is slowly reduced.

Hope this helps. Good luck and better health.

[Dirty Don]

Welcome Boo...strange club to have to join, but lots of good info and good peeps on here with all kinds of experiences. Good place for you to be for now. I have pretty much what you do...sinuses & ears. I've been on pred for 2 years till this Sept, but flared and am back on it feeling well again. I take 15mgs mtx a week. It seems the doc may be a bit panicky unless your numbers aren't showing any improvements also. It takes at least 5 weeks, more like 6ish for mtx to take effect fully. Rtx and others may be an option at some point, but if your numbers are improving at least, then give this level of drug a chance and save the stronger ones for later if needed. Maybe just a higher dose would work for you as it has for me with pred...not enough to be dangerous but just enough to feel much better. Best to you Boo...

[drz]

When you are first diagnosed they generally don't call fluctuations in your Weg symptoms "Flares" as the term is usually used after you obtained a drug induced remission for some time. If your condition is getting worse they may decided the current treatment is not working fast enough so they may switch to something else. RTX and CTX are usual first drugs to get Wegs under control. If your case is consider mild and not life threatening or presenting a high risk of major organ damage, then MTX and AZA are usually used first. All these drugs have similar side effects and risks but they are considered less than the risk of letting Wegs run wild and causing a major damage to your body that can't be repaired. They can monitor with lab results to watch for side effects and also watch lab indicators of progress plus your clinical symptoms to decide if drugs are working for you.

[annekat]

Welcome, Boo, you have come to the right place. I, too, have most of my Wegs activity focused on my sinuses and ears. I had lung involvement, too, so was put on CTX at the beginning, which is a stronger drug than MTX. That worked for me, and now I'm on MTX, as are quite a few people with only sinus/ear involvement. You say 6 pills a week, that would be 15mg. a week, which is what I take as a maintenance dose, as my disease activity is pretty well controlled now and we are just trying to keep it that way. I would suspect that is a bit of a low dose for someone like you who is still in the early and more critical stages. To me it would make more sense to just try raising the dose instead of contemplating RTX at this point, based on what I've read here on the forum. I know there are many on here who are or have been treated with more like 20 or 25mg. of MTX as an initial treatment. Sometimes a doc will start someone on 10 or 15mg. to see how they react to the drug and get them used to the side effects, and then raise the dose to a more therapeutic level. Good question Pete asked about whether you are seeing a Wegs specialist or whether you even have easy access to one where you live. Docs who aren't real specialists can consult for free with those who are, most of whom are listed on the Vasculitis Foundation website under Support>Medical Consultants, or something like that. If your ears are really about to explode, then maybe your doc is right and you should be on RTX, but that takes awhile to work, too. I wish you the best, hope you see some recovery soon. Please keep us posted and feel free to ask anything, share anything, anytime.

[Alysia]

Hi Boo,
welcome. don't be afraid of the RTX. I know how you are feeling, because I was also frightened and nervous. the amazing experts here helped me so much. I already got 2 rounds of it, and all goes well. I felt exhaustion and aching body but this is nothing comapring to WG stuff. this med is a miracle. good luck and update us how are you.

[Boonickel]

Thank you all for the words of encouragement. Since I am just starting this journey there are a lot of terms that I don't know quite yet. I will let everyone how it started...Sept. 2011...My right ear just swelled up one day. I went to urgent care and they told me I had shingles...gave me some meds I went on my way. 3 months later my left ear swelled, diagnosed inner ear infection...3 months later - went and seen ENT got a CT - showed deviated septum and ear infection given antibiotics and predisone. Every 3 months for the next year my ear swelled. I kept going back forth to the dr. I have been on Ciprofloxacin, Tobramycin, Sulfamehoxazole, Amoxicillian, Predison, Triamcinolone, Neomyciin, Clindamycin, Bactrim, Methotrexate and not to mention for 21 days 2x a day I did Ziyvox by IV. Finally I was sent to KU medical center in and seen and ent there. He diagnosed me with Polychondritis I was then sent to a Rhumatoligist. Now the ear swelled again they got a biopsy did MRI, CT of lungs, blood work, oh more blood work and I was diagnosed with WG. I hope this helps a little so everyone understands.

[Boonickel]

I'm seeing a Rheumatologist. I take folic acid, predisone right now.

[annekat]

Yes, what you went through is similar to what many of us did, the months of ear/sinus problems and undiagnosed WG. But it sounds like it is hitting your ears extra hard. Have you lost hearing? I'm also not clear when you say your ears are enlarged, do you mean the visible outer part of your ears? That sounds unusual. It would seem the inner parts are in really bad shape to be causing a change in the appearance of the external part of your ears. I do feel you need to be on something stronger than 15mg./wk of MTX, whether it is more MTX, CTX, or RTX. Maybe a higher dose of pred, too. And while I have no experience with RTX, I would agree with the others who say don't be afraid of it and just go for it if that's what the doc decides. Most people do fine with it and it helps them a lot, going by what I've read on here.

It is good that you are seeing a rheumatologist, but not all of them have much, if any, experience with Wegener's. So a consultation with a true expert might be in order if your case is really severe. Mostly, people with just sinus/ear involvement are considered to have a less severe case than those with additional lung or kidney involvement. But your case sounds a little unusual, the way it is hitting your ears, and may require additional help from WG specialists.

[Boonickel]

I lost the hearing in my right ear. Getting a hearing aid in a couple weeks so I can hear people. I think they are sick of me saying "huh" :) It is actually the entire ear - inside & out. The ear itself looks like I got smacked in the side of my head with a two by four over and over - kinda like what a boxer's ear looks like after he's been whacked about 100x. it swells to the point that they can't fit the little black thing in the ear to look at the inner ear but when they have they say that is so inflamed that by touching it inflames it more.

[annekat]

I lost the hearing in my right ear. Getting a hearing aid in a couple weeks so I can hear people. I think they are sick of me saying "huh" :) It is actually the entire ear - inside & out. The ear itself looks like I got smacked in the side of my head with a two by four over and over - kinda like what a boxer's ear looks like after he's been whacked about 100x. it swells to the point that they can't fit the little black thing in the ear to look at the inner ear but when they have they say that is so inflamed that by touching it inflames it more. That sounds so extreme to me that your outer ear, the visible part, is so affected. I'm wondering if anyone else here has had that happen. I had a severe infection in both ears at the beginning of my Wegs, but didn't actually get diagnosed until 2.5 years later. The infection was antibiotic resistent, but they finally killed it with Levaquin and IV Rocephin (I think). I immediately lost some hearing in my left ear due to nerve damage and later the hearing in both was lessened by conductive loss, blocked Eustachian tubes, to where I now wear hearing aids. Some people regain their hearing, but I don't expect to, though it may have improved a little as the inflammation has lessened. Anyway, my ears were in pretty bad shape, and I did have a moderate outer ear infection once in addition to the middle/inner ear ones, but my ears never changed in appearance on the outside, the part people see. That is why your case seems extraordinary to me. It seems you must have a great deal of inflammation on both sides of your ear drums for your entire ears to look that way and be so sensitive to touch. I hope they are able to get this cleared up soon by whatever means will work.

[Boonickel]

No to sound happy or anything but WOW!!! this makes me feel so much better to have other's out there that have gone through what I have. Know exactly what you mean by the 2.5 yrs with not answers and someone telling you that you have a virus and lets do this and try this. MY GOD I felt like a Ginny Pig!!! Granted I try to find the funny in everything cuz u know laughter is the best medicine that when Dr's asked about the picks I show them and then laugh. If i can figure how to up load some pics I'm more than happy to share :)

[annekat]

I'd love to see some pics of your ears.

Yeah, the 2.5 years, or more, is kind of typical for us for a delayed dx. Some are able to get it a lot sooner. But for many, things have to get a whole lot worse for it to happen; in my case, it was when WG went into my lungs and it seemed like I had pneumonia. Even then, my pulmonologist thought I sounded pretty good and that I wasn't that sick, until he took a second look at my xray and thought I should go into the hospital for tests because I could have endocarditis, something that IV drug users get, which I'm not and have never been. In the hospital I got a CT scan of my lungs and the overseeing internist said it showed a type of lesions that indicated the possibility of WG. And they did blood tests in there, too, probably for ANCA and other things.... I was in bad shape, headaches, tightness around my eyes, red cheeks, breathing problems, and coughing a whole lot. When I got home I noticed I had a saddle nose, which no one had even noticed in the hospital! Sheesh. Well, I do wear glasses, which kind of hide it. But I scheduled an immediate appt. with my ENT for a nasal biopsy, and he was sure I had Wegs, and it was positive. My pulmy still did not think I had Wegs, or anything serious, because I had such a low ANCA reading (showing his ignorance). He was convinced when I showed him my saddle nose and then called the ENT where the biopsy results had just come in. So getting a dx was kind of like pulling teeth, and I had to work as hard as anyone to get it!

So, yes, you are not alone, not at all. Many of us just think we have a string of sinus and ear infections, asthma, allergies, arthritis, and such for months and years, until it hits the fan and we find out what is really going on.

[annekat]

Oh, and by the way, the only way I knew what a saddle nose was, or anything about Wegener's, was by searching the web, and most of what I learned right before my dx was from reading this forum. Without it, I would not have known to go to my ENT for a nasal biopsy and what the saddle nose really meant. I can't imagine how people with WG got by in the days before the internet. And this forum is the very best.

[Boonickel]

Wow...crazy....my ANCA is negative. The dr. kinda chuckled when he said it. b/c he said "well I shouldn't think anything different from you" LAUGH HERE!!! I've had allergies my whole life. Pneumonia 2x sometimes 3x a year well I have asthma, born with bronchitis - It seemed like every questions he asked about I had a legitimate answer to give him as to why I had this or that issue or so I thought. I feel so much better talking to you and everyone else who has commented. THANKS A MILLION....

Remember....The best thing about the Journey....is the people you meet along the way!!!

[annekat]

Yep, it's been mentioned on here a lot that a fair number of people with WG have a negative ANCA, or like me, a very low one. So you are not alone there, either! And it is not considered a reliable indicator. I also had a lot of bronchitis and asthma as a kid, and allergy-related asthma as an adult, and wonder if there is a connection. I never had sinus or ear issues until I got what turned out to be WG.

[SpaceflightAddict]

Yep, it's been mentioned on here a lot that a fair number of people with WG have a negative ANCA, or like me, a very low one. So you are not alone there, either! And it is not considered a reliable indicator. I also had a lot of bronchitis and asthma as a kid, and allergy-related asthma as an adult, and wonder if there is a connection. I never had sinus or ear issues until I got what turned out to be WG.

Wow Anne, that sounds almost exactly like me. I have a negative ANCA, have had allergy triggered asthma since I was about 5 years old, and get bronchitis once a year every winter like clockwork. I also never had any sinus or ear infections until two months before I was diagnosed.

The saddle nose is probably what got me the quick initial suspicion of Wegener's, I did not even notice it until an ER ENT pointed it out to me in a mirror. He started me on IV steroids right away since my sinuses were already a disaster, and got me transferred to Johns Hopkins to confirm WG asap as no doctors in the hospital I was at had ever had a patient with suspected WG.


Boonickel, I am wondering if one side of your face was hit harder than the other. For me, the left side of my sinuses and left ear took the brunt of the damage. Since I started treatment two months ago, I have slowly started to regain hearing in my left ear, so there is always hope! None of my ENT doctors want to muck around inside my ear or sinuses until the inflammation goes down and I am considered to be in remission.

It sounds like you are experiencing something similar to what I did when I was finally diagnosed and knew for sure what was going on in my body. I think the relief of knowing and a high dosage of prednisone made me the happiest man on the planet!

Best wishes to you with your treatment! For me at least, going after the WG aggressively has paid off, and I hope it does the same for you!

Keep smiling!
-SpaceflightAddict

[Boonickel]

Photo394.jpg (about:blank)

I don't know if this works but....the famous ear pic.

[annekat]

It didn't work, Boo, nor would it open in the private message you sent me. You could try emailing it to me, I sent you my address. Then I could try to post it if you somehow can't. When I've had trouble with pics in the past here, I've found they needed to be less than 100kb or maybe 80kb, I forget which, and shrinking them was a bit tricky to figure out. Also, wherever they are on my computer, if I export them to my desktop, that seems to be an easy way to access them for future reference or posting. Maybe try moving them from your phone to a computer or tablet. Would love to see your ear!

[annekat]

Well, I'm trying to post Boonickel's ear picture for her, as it seems to be a problematic one to post. But something seems to have changed in our system for inserting photos. Before, I could insert a jpeg that had been saved on my desktop, now it only offers me the option of using a URL. Garrgh! So I will have to try a different method offered by another member, to try to generate a link. Anyone know why we cannot do it the other way anymore, or today?

[annekat]

No, it didn't work. I have tried Andy's method with the website he gave me but cannot get a live link into a post. Have no more time to try right now. Maybe someone can help, as you all should see this pic.

[Savva]

Hey, do not worry - by goin' on like that u r only hurting urserself. Stay calm, medicine will do the trick. Rituximab is the best med out there I am sure your doc knows what he is doing. Guys here on the forum will answer every question.

[pberggren1]

Anne, send me an e-mail of the pic and I will do it.

[pberggren1]

Here is boonickels ear......


imgur: the simple image sharer (http://imgur.com/edit)

[annekat]

Phil, I don't see the ear. Clicking that link just takes me to the gallery page where the ear doesn't appear. Isn't there a way to get just a link for the ear picture or insert the pic directly into a post like I used to be able to do? I don't get it. We used to be able to insert a pic from somewhere on our computer without turning it into a URL, and any URL I get for it won't appear live. Am I missing something here?

[pberggren1]

When I click it I get the ear.....hmm, not sure then hun.

[annekat]

Geez, maybe it's my computer, then..... old and slow, could try resetting the browser or something, I guess. And that image site doesn't seem to work for me at all.

[pberggren1]

I had no problem at all uploading the image and creating the link.......hmm

[annekat]

I've dragged images to the page and had them not appear in the gallery but in a separate window which has some sort of link at the top, which I copy and paste into a post, but it will not become live, so I delete the post. I must be doing something wrong. Well, at least people will get to see the ear, I guess. I wonder what their response is, or is it normal to have an ear like that with Wegs?

[pberggren1]

Don't copy and paste....create a link.

No, that is not normal for any ear.

[annekat]

I did create a link, I thought, and copied and pasted it into the place that asks for a URL in the "insert image" interface of the forum. It inserted the link into my post but it was not live! It could not be clicked on! No, I did NOT try to copy and paste the actual pic. I give up, for now.

I know the ear is not normal, but I wondered if it has happened to anyone else with Wegs. Wegs is not normal.

[pberggren1]

Send it to Andrew and maybe he can figure it out.

[annekat]

Thanks, Phil. I did not mean to be crabby. I will go there again tomorrow, I really don't need to insert any pics right now, am just frustrated because I used to be able to and now all of a sudden it is a problem. I know boonickel had trouble with that particular pic, too.

Do you think the ear is that swollen because of a massive outer ear infection, which could have started with a middle ear infection that leaked into the outer ear? I know she has been on a ton of antibiotics and it was very resistant. I had an outer ear infection once under those circumstances, when there was a small hole in my eardrum, but it was much less severe and could not be seen from the outside. However, the irritation on the inside of my ear took a long time, like a couple years, to go away, and I can still detect some crusty stuff in there. I have no ear infection currently. I know most Weggies have problems on the inner side of their eardrums and haven't heard so much about the outer part getting involved. Anyone else?

[pberggren1]

I can't say for sure because I have seen an ear like that before and don't know much about outer ear infections.

[annekat]

Thanks, Phil. That sort of answers my question.... this kind of ear is pretty unusual. I was even thinking mastoiditis, but that presents as very red and swollen behind the ear, not the whole ear, as far as I know. I only know about that because my ENT gave me precautionary IV antibiotics for a few days to prevent it after my big ear infection. Boonickel told me she had a much longer course of IV antibiotics than I did. I wish her the best and hope we will hear from anyone else with this sort of involvement or who knows about it.

[pberggren1]

I hope she will be okay and can get this figured out soon. Does she have a Wegs expert?

[annekat]

I hope she will be okay and can get this figured out soon. Does she have a Wegs expert?
Looking back at the start of the thread, it doesn't sound like it, but the doc is putting her on RTX, so that is something. It just seems so unusual to be focusing on an outer ear and makes me wonder what is going on in the middle/inner ear. I hope the RTX works, and soon!

[Esmarie]

Hi, am new here, and now I feel as if I am not alone in the world. It took years for the doctor and ENT to diagnose my illness, as my blood tests up to today never ever shows that I have Wegener's, but I have all the simptons. And yes, I also use bactrim on a daily basis, and that really helps. As this is not a very well known illness here, most of the doctors know about the illness, but not really how to treat it. So, it seems as if this forum is going to help me to help them :-)

[annekat]

Hi, am new here, and now I feel as if I am not alone in the world. It took years for the doctor and ENT to diagnose my illness, as my blood tests up to today never ever shows that I have Wegener's, but I have all the simptons. And yes, I also use bactrim on a daily basis, and that really helps. As this is not a very well known illness here, most of the doctors know about the illness, but not really how to treat it. So, it seems as if this forum is going to help me to help them :-) Hi, Esmarie, and welcome. This forum is the best place to be if you have WG. I know what you mean about helping your doctor help you. I do that, too, as a result of what I learn on here.

You might want to start a new thread about yourself under New Member Introductions. That way this thread won't get too confusing as to whom and what it is about. We'd love to hear more about you, where you live, the progression of your Wegs, where most of your involvement is, etc., and you'd probably get more responses that way. BTW, you should be on more than just Bactrim. You should be on an immunosuppressant and prednisone as well. Maybe they are still deciding on what to prescribe. Keep us posted.

[Debbie C]

Anne, I'm like you .all I got was a bunch of pics but no ear

[pberggren1]

Maybe I should post some booger pics.....:flapper:

[annekat]

Well, Phil, if you use that link creating site, Deb and I won't have to see them! Deb, that is weird, but at least I'm glad I'm not the only one and I must be right that there is a glitch for some people. I wonder if it has to do with our browsers.... I use Safari on an old Mac laptop. I might try a different browser and see if there is a difference.

[drz]

Anne, I'm like you .all I got was a bunch of pics but no ear

Me too! No ear in pix I looked at.

[annekat]

Me too! No ear in pix I looked at. I just wanted the ear pic, anyway, not a bunch of other pics. If only the Insert Image function would let me insert an image from my computer, not a url, then we would have the ear pic. It used to let me do that, but now doesn't offer the option. Perhaps I should ask Andrew what the deal is with that. I think I can email anyone the ear pic that wants to see it. But it's not even my ear! I wonder how boonickel is doing and whether she thinks we are crazy for going on and on about her ear which we can't even see.

[pberggren1]

Maybe this link will work for the ear of Boonickel......


pberggren1's uploaded images - Imgur (http://pberggren1.imgur.com/all/)

[Alysia]

Maybe this link will work for the ear of Boonickel......


pberggren1's uploaded images - Imgur (http://pberggren1.imgur.com/all/)

the former link is not working for me either.
in this one it is written that your pics are not publicly available and at the side it is written 0 images.
maybe the ear insist on not being "exhibited" here ?

[Esmarie]

Hi Pete, at the moment I only use bactrim on a daily basis, then I rinse my nose every day with Salex as I cannot blow my nose. If I have breathing problems I use a nebuliser with pulmicort or panafcort. I have made a note of your suggestion and I am going to discuss it with my ENT. No, he is not a wegs specialist. I am not aware of any such specialist in SA. I am going to ask him regarding that as well. I see him this coming week. As he is a very friendly and very, very helpful, I know I will get some answers.

[pberggren1]

hmm....works for me

[drz]

hmm....works for me

Yea, but it is your program. Try it on some one else's computer who isn't logged onto your site.

[annekat]

Phil, it seems like everything works for Batman! (Boonickel, if you are reading this.... Phil is Batman).

[MikeG-2012]

OK, I'm a little late for this discussion, but a really great program for resizing and simple image manipulation is Irfanview. Yea, funny name, but it works great, and it is non-commercial FREEWARE. I've used it for years, in conjunction with PhotoShop. It's small, fast and easy. Download IrfanView 4.36 - FileHippo.com (http://filehippo.com/download_irfanview/)

All registered users of the forum have an area to post photos on this site. I tried it with a few of mine some time ago (resized to very small of course), and they uploaded just fine.

[annekat]

I've done it, too, Mike, but the last couple times it only offered me the option of providing a URL to access the image, where before, I'd been able to download it from anywhere on my computer, such as my photo files or the desktop. Haven't tried it today, though..

[Boonickel]

Im looking to up load some different pics of the ear. I start the Rdx on Thursday....Hoping that this helps. I was wondering if anyone else experiences the sever headaches??

[annekat]

Im looking to up load some different pics of the ear. I start the Rdx on Thursday....Hoping that this helps. I was wondering if anyone else experiences the sever headaches?? I think a lot of us have had the headaches, though I doubt if they've all been the same in cause or severity. I had a lot of them right around the time I was dx'ed... there was just so much inflammation around my eyes and sinuses that there must have been pressure causing them. They went away fairly soon with standard WG treatment, within 2 or 3 weeks, I'd say, though my memory is hazy. I hope you are on track to get proper treatment soon, if you aren't already... I'm forgetting and would have to look back at the first post but am thinking maybe you weren't on all the meds you should be and maybe needed a doc with more WG knowledge and experience.

[Boonickel]

Honestly, the only only thing that I've been on for two weeks is 20mg Predizone.

[annekat]

Honestly, the only only thing that I've been on for two weeks is 20mg Predizone. That doesn't sound like enough to deal with the swollen ears and other problems you are having. I hope you can find a better doc.... if things get really bad, I would go to the ER and hopefully they could get you admitted and started on some proper meds. I would hope you'd be able to accomplish it without it getting to that point, though.... My doc is nothing special as far as WG goes, he is just a local pulmonologist with little WG experience, but he was able to find out what I should be on and prescribe it for me as soon as he knew I had WG. What he prescribed turned out to be correct; it should not be that hard for a doc to find these things out.

[KimH]

Could the swollen outer ear a sign of Relapsing Polychondritis? Us Weggies can have more than one AI disease. On my journey to my dx of wegeners my ENT would check my ear cartlidge as well as my nose. He was looking for RPC which usually manifests itself as painful "cauliflower" ear.

[Barbara N]

Phil, I don't see the ear. Clicking that link just takes me to the gallery page where the ear doesn't appear. Isn't there a way to get just a link for the ear picture or insert the pic directly into a post like I used to be able to do? I don't get it. We used to be able to insert a pic from somewhere on our computer without turning it into a URL, and any URL I get for it won't appear live. Am I missing something here?

I am the same Phil, I only get a gallery of pictures