Possible Wagner's but still in limbo

Hi everyone, I've been lurking on this board but for a few days so I thought I would introduce myself. I'm 33 years old and I've had weird autoimmune symptoms since I was 19. I've had several episodes of pleurisy where a CT found lung nodules but I never had a firm diagnosis of what it was, was just told to take ibuprofen and eventually the nodules would go away.

I had a nodule on my eye for a while and saw an optometrist who did a biopsy. The only thing which showed up was that there was a high amount of white blood cells in the nodule. Then, after the biopsy the nodule never grew back and my pain eventually went away.

At 30, I suddenly had a flare of horrible joint pain. I went to see a rheumatologist and the only abnormal blood test was my CRP was slightly high. Because of the level of pain, she put me on Pred and methotrexate which immediately helped. I weaned myself off pred in a few months and continued methotrexate for a few years. Then, a new rheumy I saw felt I had had reactive arthritis due to pneumonia and didn't need to be on methotrexate so I stopped.

About 9 months later, I was feeling fine but suddenly developed muffled hearing in 1 ear. After that began the most hellacious series of health problems Ive ever had; pain, ear infections, more hearing loss, very loud tinnitus, both ears affected. This all began Sept. 2019. I had sinus surgery, eustachian tube dilation, and tubes put on. Despite the tubes, my hearing loss continued to get worse, and I have fluid leaking out of my ear nightly. My ENT didn't know what else to do and referred me to an otologist. At this point I've developed numbness in my tongue, sores in my nose, and feel generally crappy every day. After about a month of unsuccessfully treating it with more antibiotics my otologist said he felt it may be Wegner's granulomatosis. He sent me for testing and so far the things which have turned out abnormal have been ESR of 51, trace blood in the urine, and a CT found a lung nodule. My ANCA was positive but the subsequent tests for specific antibodies were negative.

I'm awaiting to see a new rheumy and a pulmonologist but it will be months before my appointment. Meanwhile, I'm struggling to keep my job with this huge hearing loss and trying to figure out how to cope with the tinnitus, which has been my most bothersome symptom. I'm scared that because of how long I have to wait to start treatment I won't regain my hearing.

Thanks for reading this. I have to say I really appreciate the positivity on this message board. I visited a support site for tinnitus for a while and the level of negativity on there really brought me down and made me feel like my life was over with this affliction.

Welcome. Your collection of problems certainly SOUND like they could be wegener's. If Wegener's is high on the suspect list then I would be very concerned about having to wait months to see a rheumy. Wegener's can advance quite quickly and unexpectedly - especially if it is not getting primary treatment for Wegener's . Is there some way you could manage to get to a qualified specialist before then? It could be that you will be fine for the next few months but if you do have Wegener's and it flares up you will need to seek out a specialist very quickly anyway. I myself would get tremendous peace of mind for the next few months if you could rule it OR rule it in and begin treatment. As you have also said. I know it's difficult to get seen quickly these days but if it were me I would really focus on that. Where are you located?
You mentioned sinus surgery- did they do a sinus biopsy at any time? Sinus biopsy is high on the list for getting WG diagnosis. I myself was diagnosed that way and all my blood numbers are usually low- and not in synch with my actual condition.
It sounds like you are making progress toward getting diagnosis and then getting on appropriate treatment. Absolute gold would be being able to see one of the Wegener's gurus that the Vasculitis Foundation has on their list. In a difficult case like yours where numbers are elusive their extensive experience is invalualble for someone like you- or me . hahaha

Perhaps you could come up with a small list of the experts close to you that you can make appointments with and then also get on their cancellation list. I have been successful with this technique more than once to get seen sooner than I was initially told that I could. Even if you were on just one cancellation list it would put you in place to get some good luck. I have been saving up my good luck lately- I'll send you some.

Thank you for all the info. When you had your sinus biopsy, how did you about having it ordered, was it the rheumatologist or ENT who performed it? I made an ENT appointment to ask for a possible biopsy of the nodule in my nostril. When I had the sinus surgery done I was only having issues with my ears. The maxillary sinus was occluded with an infection and my ENT said he just saw a lot of polyps. I'm just not sure if I need to see the rheumy first to get the biopsy ordered.

I live in St. Louis, MO and there is a Vasculitis clinic associated with Washington University here, I'm just having a hard time getting my otologist to refer me there
and my PCP is affiliated with a different healthcare system so she can't refer me to them. I see my otologist this Friday I will try politely demanding the referral, lol.

My biopsy was ordered by the ENT. I think this is the usual route. I like your idea of polite demand. One of my great lessons of this illness is becoming my own strong advocate. I have had this illness for over 40 years now and I could literally write a book filled with just my experiences of when I had to steer testing and treatment into a direction that was my best interest. Many doctors are over worked (truely) and I see it as my job to be as informed as I can to work with them in my best interest. Ocassionally, polite demand becomes necessary.

One of my favorite experiences (only in retrospect) was during a time when my primary doc was repeatedly cutting short our visits because he was in a hurry. I did my part every time. I wrote everything down that I needed to go over ahead of time so as not to waste ANY of his time. I had a list of things to go over- important things.
This time my doc gets up and says "Well, I'm sorry but I've got other patients to see" . I had been there maybe ten minutes and my list was only half done. I had done NO chit chat, now waste of time at all.
So when he got up and said this and started for the door I pointed to his chair and said "Sit down, we are not done yet."

It shocked me as much as it did him. I am not an assertive person normally but I wasn't going to be treated like that. I had reached my limit.
To his credit, he went back and sat down and said "ok, what have you got?"
We finished my list fairly quickly and he was able to go see other patients.

It is YOUR health, YOUR life, they work for YOU. They are there to help YOU. Yes, it ALL about YOU. YOU are paying them to help YOU.
Ok, I'm getting wound up again. hahaha I hope things go well for you and you are able to be seen sooner rather than later.
I can say with certainty that if I had done nothing but listened to my doctors all these years, done what I was told and didn't question their ideas- I would not be alive. Several times over , I would be gone.

I guess every situation is different; my nasal biopsy, which proved my dx, came about through a series of events. I had been going to a well-respected ENT in my town for a series of atypical, for me, ear and sinus infections which were chalked up to allergies but were really WG, and treated with a series of different antibiotics along with 10-day tapers of prednisone.
After a couple of years my lung involvement began. The ENT had referred me to a pulmonologist, who had me get xrays for what I thought might be pneumonia. He saw something on the xray that he thought might be endocarditis. He was going on vacation but wanted me seen, so put me in the hospital overnight for some blood tests and a CT scan. At that point I was in pretty bad shape so was glad to be there. The doc overseeing my case was great; I don't know if my blood work was conclusive, but the CT scan suggested Wegeners, which I had already read about on the internet. I was to take that info back to the pulmy.
Almost as soon as I got home, maybe the next day, I noticed my saddle nose for the first time, and I knew it was a symptom of WG. I got a quick appointment with the ENT by telling his nurse what was going on. She and the doctor stayed late to do my biopsy on the spot in his examination chair. We all knew I had WG, and he was very apologetic for not catching it sooner. I went home and started reading this forum.
But when I went back to the pulmy a week or so later, he pooh poohed the idea of my having WG, because the blood work didn't make a strong case for it. I told him what had gone on with the ENT, and I showed him my nose. He looked rattled, and went and called the ENT. The biopsy results had just come in and I had WG. So since the ENT said he didn't treat WG, this pulmy was the one who started my treatment. Someone had to, and he did a good job. I've moved on since then.
I guess l live in a small enough town, yet large enough, that there are lots of doctors but not a lot of specialists, yet it's not too hard to get an appointment with one. But it is tightening up. Me2's idea of getting signed up for cancelations is a good one, I'm sure. I don't recommend getting a saddle nose in order to know you have WG. And in lieu of getting an appointment, if things get really bad, you can go to the ER, where you might get admitted and be given the attention you deserve. Maybe they could even expedite a referral to a good specialist. That's how I got hooked up with my ENT. I had such a painful bilateral earache/infection and nothing had helped, so I went to the ER, where he prescribed something and gave me an urgent referral.
Anyway, welcome to the forum. This is really the best place to go for information, support and friendship. Please keep us updated on how things go.




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Originally Posted by Solose

Hi everyone, I've been lurking on this board but for a few days so I thought I would introduce myself. I'm 33 years old and I've had weird autoimmune symptoms since I was 19. I've had several episodes of pleurisy where a CT found lung nodules but I never had a firm diagnosis of what it was, was just told to take ibuprofen and eventually the nodules would go away.

I had a nodule on my eye for a while and saw an optometrist who did a biopsy. The only thing which showed up was that there was a high amount of white blood cells in the nodule. Then, after the biopsy the nodule never grew back and my pain eventually went away.

At 30, I suddenly had a flare of horrible joint pain. I went to see a rheumatologist and the only abnormal blood test was my CRP was slightly high. Because of the level of pain, she put me on Pred and methotrexate which immediately helped. I weaned myself off pred in a few months and continued methotrexate for a few years. Then, a new rheumy I saw felt I had had reactive arthritis due to pneumonia and didn't need to be on methotrexate so I stopped.

About 9 months later, I was feeling fine but suddenly developed muffled hearing in 1 ear. After that began the most hellacious series of health problems Ive ever had; pain, ear infections, more hearing loss, very loud tinnitus, both ears affected. This all began Sept. 2019. I had sinus surgery, eustachian tube dilation, and tubes put on. Despite the tubes, my hearing loss continued to get worse, and I have fluid leaking out of my ear nightly. My ENT didn't know what else to do and referred me to an otologist. At this point I've developed numbness in my tongue, sores in my nose, and feel generally crappy every day. After about a month of unsuccessfully treating it with more antibiotics my otologist said he felt it may be Wegner's granulomatosis. He sent me for testing and so far the things which have turned out abnormal have been ESR of 51, trace blood in the urine, and a CT found a lung nodule. My ANCA was positive but the subsequent tests for specific antibodies were negative.

I'm awaiting to see a new rheumy and a pulmonologist but it will be months before my appointment. Meanwhile, I'm struggling to keep my job with this huge hearing loss and trying to figure out how to cope with the tinnitus, which has been my most bothersome symptom. I'm scared that because of how long I have to wait to start treatment I won't regain my hearing.

Thanks for reading this. I have to say I really appreciate the positivity on this message board. I visited a support site for tinnitus for a while and the level of negativity on there really brought me down and made me feel like my life was over with this affliction.

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If you can swing it some how I would get very active in seeking some expert help real quick. I saw many doctors for various GPA symptoms for over two years and finally it got so worse I nearly died from it and ended up with serious damage including deafness, kidney damage, lung damage, loss of balance and and it made my diabetic neuropathy much worse. Then it took almost a year in the hospital and nursing home to even begin to regain much function and another year before i reached my new normal max so I could get by in light assisted living situation. I think earlier and more prompt treatment would have prevented much or most of the damage.

I remember once years ago when i was was being brushed off my a local small town doctor who had an important golf date or something, I went home and called the world famous Mayo clinic, and asked about getting some help and then they replied how soon can you get here. I went early the next morning and got seen. The world class clinics have their reputations for a reason. One way to get help from those facilities is to go to their ER facilities. You will most likely see residents or interns but they can and will usually consult with the staff experts and give you the correct treatment. If you aren't close to some of the expert GPA facilities or doctors listed on the Vasculitis web site, then look at the nearest University with a big medical school since they usually like difficult and challenging cases like GPA since we are a rare commodity and more interesting.

DRZ, I really like what you've said here. I had to tear up just reading it as some of my experience is quite like yours. So much suffering can be prevented with prompt appointments and treatment.

Once, when I was desperately ill and not able to get an appointment with my Rheumy I knew I had to do something. I was sinking very quickly and I knew it.
I knew I could not wait the several weeks they told me I had to wait. So, the next morning I got up and went to his office and sat in the waiting room. The nurse saw me there and asked if I had an appointment (for that day). I said "No, I don't but I can't wait for one. I'm going to sit here until I can see someone." I was so desperate.
They were able to squeeze me in that day around noon. And, to their credit, did not give me any grief over just showing up like that. Some times you gotta do what you gotta do.

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Originally Posted by me2

My biopsy was ordered by the ENT. I think this is the usual route. I like your idea of polite demand. One of my great lessons of this illness is becoming my own strong advocate. I have had this illness for over 40 years now and I could literally write a book filled with just my experiences of when I had to steer testing and treatment into a direction that was my best interest. Many doctors are over worked (truely) and I see it as my job to be as informed as I can to work with them in my best interest. Ocassionally, polite demand becomes necessary.

One of my favorite experiences (only in retrospect) was during a time when my primary doc was repeatedly cutting short our visits because he was in a hurry. I did my part every time. I wrote everything down that I needed to go over ahead of time so as not to waste ANY of his time. I had a list of things to go over- important things.
This time my doc gets up and says "Well, I'm sorry but I've got other patients to see" . I had been there maybe ten minutes and my list was only half done. I had done NO chit chat, now waste of time at all.
So when he got up and said this and started for the door I pointed to his chair and said "Sit down, we are not done yet."

It shocked me as much as it did him. I am not an assertive person normally but I wasn't going to be treated like that. I had reached my limit.
To his credit, he went back and sat down and said "ok, what have you got?"
We finished my list fairly quickly and he was able to go see other patients.

It is YOUR health, YOUR life, they work for YOU. They are there to help YOU. Yes, it ALL about YOU. YOU are paying them to help YOU.
Ok, I'm getting wound up again. hahaha I hope things go well for you and you are able to be seen sooner rather than later.
I can say with certainty that if I had done nothing but listened to my doctors all these years, done what I was told and didn't question their ideas- I would not be alive. Several times over , I would be gone.

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Solose,
You have been given the most thorough, experienced advice that all the money in the world could not buy. These people are speaking to you from the heart and sharing all the good, bad and ugly that could happen. I implore you. I beg you. Listen to them. They are alive today and want to help you. Do you have to have a reference to get into Washington? What if you just walked in the door with your records and appealed to them with how desperate you are? Do anything you can to be seen by the best as fast as possible. As me2 says this really is your LIFE.
Masha

I had an appointment with my otologist on Friday that ended up being 3 hours. In the last 2 weeks since I saw him, I had a dramatic sensorineural hearing loss in my previously "good" ear. He is still not sure if this is Wagener's or something else but did steroid shots into my ears to try to recover some hearing. This was pretty crushing as previously I mainly had conductive hearing loss and I still held out hope that with treatment my hearing could come back and the tinnitus could go away but sensorineural hearing loss is permanent.

I also did finally got the referral to a rheumy at the Vasculitis clinic at Washington U that's Feb.4 as well as a pulmonology appointment in 4 weeks. I also have an MRI scheduled. At this point I'm hoping it's Wagener's or something else autoimmune because if not we're back to square 1 and the CT report of my lungs said the nodules I have are either inflammatory or cancerous, I would rather it be autoimmune than cancer.

I am tentatively hopeful for that rheumy appointment. What I'm afraid will happen is he will say we need to wait until a biopsy positive for GPA comes back. I don't have my ENT appointment until Feb. 10 and pulmonary Feb.18. I'm sure they can't do the biopsy at the appointment so that will be more wait time. Meanwhile, I'm afraid I will go totally deaf. I feel like the rheumy will not consider hearing loss an emergency enough to start treatment without any definitive proof of GPA, but to me it is. I realize it's not as bad as some of the things that could happen with GPA and it's not life threatening, but it's really turned my life upside down. I just finished an academic program in a field where good hearing is essential and even with a hearing aide I struggle a lot at work.

How have you all coped with hearing loss that comes with this disease? Has anyone had sensorineural loss that got better with treatment for GPA? After I had the steroid shots I did feel like my hearing improved somewhat.

I don't know a lot about the hearing loss issues. I myself had hearing loss that has gotten better but I don't think it's the same type as you have. I have had neurological cerebellum problems that caused me serious problems for a couple of years that also improved. I know it's not the same thing as what you are talking about. I take Lion's Mane mushroom supplements that are supposed to help with neurological healing. I have no idea if it works but there does seem to be science that supports the idea and the cost is minimal for me to try it.
That is great news about your upcoming appointment. My Rheumy has at times gotten me seen sooner by ENT. My ENT has normal appointments booked out months in advance. It's crazy.

Of course I always jump on the cancellation list too to try and get in sooner. I've also gotten the number of the ENT's nurse and called her directly and explained my situation. She, at times, has been able to help me. It couldn't hurt to talk. They are more inclined to help a voice on the phone than a scheduled appointment.

Thinking outside the box a bit- I wonder when you talk to your Rheumy and share your concerns about further hearing loss or other problems (to your already long list) might you be a candidate to start something like Cytoxan immediately. Treatment can be started based on symptoms alone - without biopsy or other numbers. It's not common, certainly not what any would like, but can be necessary. It would appear to me that it's a balance of risk that you may treat an illness you don't have for a few weeks or get further damage because you DO have it and it's not receiving primary treatment. I don't know what the answers are and certainly your Rheumy is the one who really decides. But, I have found myself with a tricky balancing act before and asked the Dr to let me make my own choice - and that I would accept the risk in the direction I wanted to go. Of course, sometimes I was right, sometimes I've been wrong- but in EVERY case I'm the one who pays the price. It always boils down to this for me- I would rather make my OWN mistake then make someone else's. It's not easy. It's not fun. I have never regretted at least doing what I thought was best at the time. All too often , that's the situation this illness hands us.

For myself, (and I only know for myself) , Cytoxan works very quickly. Often, for me , in the first day I can feel the action of it in whatever area WG is attacking me. I don't know if knowing this helps you at all - but I feel like I have to share my experience and hope you find your own best way. It seems like you are getting close to really getting a handle on your situation. You are doing a great job working your way through this I think. Keep pushing. Follow your instincts. (and of course, check them with reason)

I also had hearing loss before diagnosis and treatment and had a good and a bad ear, but it dragged on much longer than yours has, so I think there is hope. Feb. 4 is coming right up, and I hope the rheumy will be able to start treatment without a biopsy, as is sometimes the case, based on symptoms and blood work, or if not, Feb. 10 is not that long of a wait for a nasal biopsy, which might not need a long wait if done right in the ENT's office, as mine was,. If that is not conclusive, as they aren't always, then the pulmy might order lung biopsy, which is much more invasive and harder to schedule but also more reliably conclusive. If either is positive, you'll still be getting a much earlier dx than I and many others have gotten, and thus better chances for your hearing to recover, even if some of the loss is sensorineural.
Both my ears had conductive loss and one, the left, also had sensorineural. The ENT held out more hope for the right ear to improve. But to his surprise, they both did. This was 2 years before dx, and I was being treated with repeated short courses of antibiotics and prednisone, since it appeared to be caused only by a severe bilateral ear infection. I still needed hearing aids and haven't stopped needing them. But now I only use one, because the formerly better right ear developed an infection in the OUTER canal, sometime after dx, which would not clear up with antibiotic drops, and which functionally destroyed the eardrum and the little bones behind it. So a hearing aid no longer helps that ear. But the formerly worse left ear has maintained its level of improvement with the aid.
The aids I have were donated to my ENT's audiology department and thus were used and reasonably decent at the time but not top of the line. But I function pretty well with the one I can still use in the ear that still hears. It can adjust to filter out background noise, and I no longer am bothered much by restaurant noise and such. Out in public or in meeting rooms, I can hear some people very well and others with a lot more difficulty. Meetings are the worst unless they have excellent PA systems, so I rarely go to them, and don't have to in my line of work. Outdoors and in grocery stores I generally do OK but may often have to point my good ear in the direction of the speaker, have them walk on my left side, etc. Since I work largely at home, it isn't a huge problem, but you say hearing is important to your work, so that IS a problem. I know there are some more advanced hearing systems available as options, as well as the most expensive hearing aids. You could talk to an audiologist about these and maybe try them out in her office, as I did, though I wasn't willing or able to spend the money.

Of course it's true that time is of the essence. I realize you've had various suspicious problems all your adult life. And it must seem like a very long time since September, when the most recent onslaught of problems began for you. And of course you want some answers ASAP. Now that you have some appointments lined up in the next few weeks, you can maybe feel encouraged that the ball will get rolling. If it still seems too slow and you're getting no relief from either worry or symptoms, you might employ some of the methods used by me2 and drz.

I see me2 was writing while I was and snuck in ahead of me. I quickly read and agree with everything he said. Especially in regard to Cytoxan (cyclophosphamide, CTX). It is thought of as the mean and dangerous drug that used to be the standard, but none of them are innocuous, and CTX will indeed slow down your disease activity faster than anything else, along with prednisone. It can be taken orally, as pills, as I did, or as an IV infusion. You might not have to take it for very long at all, and then could be switched to one of the more preferred ones these days.

Good luck!

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I wanted to just quickly chime in with Anne on Cytoxan. It is sometimes viewed as archaic and super dangerous. It's not- exactly. I myself took oral Cytoxan (forty years ago) for two years and with it gained a drug free (yes, totally free) remission for the next twenty years. My experience fits with Annes assessment of it being very fast. For me , it works really fast. When I mentioned the possible use of it (for a case like yours) I was thinking not only would it be possibly stopping the disease process quickly but, that it would serve as a diagnostic tool .

If you were to respond quickly to the Cytoxan it would be a new piece of information in your search for a diagnosis and treatment. If you did not then that would also be a small bit of information. I am NOT pushing for you in any way to use Cytoxan. I'm pushing only to share experience that might bring about a better understanding and open up some possible options into the discussion you have with your Rheumy.
This group is a fantastic group of compassionate and wise people. You will be supported in ANY decisions you make to move forward toward healing and finding ways to deal with this illness.

Many years ago I was at one of the first Wegener's Conferences in Kansas City. It was my very first time ever meeting someone with Wegener's or even TALKING to someone. I had the illness for 17 years before I met someone. It was Marilyn Sampson- the founder of what is now the Vasculitis Group that supports us. I spoke to her on the phone and it was a milestone in my life to talk to someone with the same illness as me. I had lived for 17 years in total isolation. For me, it is the epitome of how it could have happened. She was knowledgable and caring and supported me in ways that no one else could. We have that here now , with this great group of people.

One of the physicians at that same conference said something that really stuck in my mind. He was a doctor who was involved with rare diseases. He said it was amazing to him how different and special the people with Wegener's are compared to the other groups he worked with with the other illnesses. He said he found that they were particularly active in learning about their illness, helping each other , and organizing themselves around that. He said in the world of rare illnesses the Wegener's group was a 900 lb Gorilla. I have found his experience to be confirmed by my own.

So, a quick thankyou to my Homies for being there when we need you.

Quote:

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Originally Posted by me2

I wanted to just quickly chime in with Anne on Cytoxan. It is sometimes viewed as archaic and super dangerous. It's not- exactly. I myself took oral Cytoxan (forty years ago) for two years and with it gained a drug free (yes, totally free) remission for the next twenty years. My experience fits with Annes assessment of it being very fast. For me , it works really fast. When I mentioned the possible use of it (for a case like yours) I was thinking not only would it be possibly stopping the disease process quickly but, that it would serve as a diagnostic tool .

If you were to respond quickly to the Cytoxan it would be a new piece of information in your search for a diagnosis and treatment. If you did not then that would also be a small bit of information. I am NOT pushing for you in any way to use Cytoxan. I'm pushing only to share experience that might bring about a better understanding and open up some possible options into the discussion you have with your Rheumy.
This group is a fantastic group of compassionate and wise people. You will be supported in ANY decisions you make to move forward toward healing and finding ways to deal with this illness.

Many years ago I was at one of the first Wegener's Conferences in Kansas City. It was my very first time ever meeting someone with Wegener's or even TALKING to someone. I had the illness for 17 years before I met someone. It was Marilyn Sampson- the founder of what is now the Vasculitis Group that supports us. I spoke to her on the phone and it was a milestone in my life to talk to someone with the same illness as me. I had lived for 17 years in total isolation. For me, it is the epitome of how it could have happened. She was knowledgable and caring and supported me in ways that no one else could. We have that here now , with this great group of people.

One of the physicians at that same conference said something that really stuck in my mind. He was a doctor who was involved with rare diseases. He said it was amazing to him how different and special the people with Wegener's are compared to the other groups he worked with with the other illnesses. He said he found that they were particularly active in learning about their illness, helping each other , and organizing themselves around that. He said in the world of rare illnesses the Wegener's group was a 900 lb Gorilla. I have found his experience to be confirmed by my own.

So, a quick thankyou to my Homies for being there when we need you.

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It is so nice to feel supported, I think I mentioned I was on a message board for tinnitus sufferers for a while when that was all I thought I had and had to make myself stop going there because it was just too negative. Tinnitus continues to be my most bothersome symptom. I feel silly being that bothered by something that isn't actually harmful or painful but it just really gets me down to never have silence and it's just so intrusively loud.

I hear you on the Cytoxan. When I had a flare of what was thought to be RA 4 years ago but I wonder if it was really GPA, I was put on methotrexate and sulfasalazine and that, along with pred, stopped my flare. The high dose pred. stopped the pain right away but as I went down in the taper some came back. Continuing on the methotrexate though, I was totally pain-free within a few months. I've read that it can be effective for some GPA patients as a first-line treatment so I may ask about that at my appointment, of at least starting up methotrexate again. I was terrified to start it as it is a chemo med, but I really had no side effects even on 18 mg.

I also have tinnitus in both ears but I know mine is not as bad as it is for some people. Mine is pretty tolerable but I can well imagine how it could really get to you. I miss the silence too. Hopefully there will be a block buster cure come up for it as there are lots of people who have it and not much in the way of solutions. A true treatment would make some drug company a LOT of money.
I have read of cases of people claiming they have been cured by the use of psilocybin mushrooms. I think it is very possible that it works for some people under some circumstances but it won't be something I myself will be trying. I have enough going on myself without increasing the variables.

That is interesting experience you had with the methotrexate. My doctor told me once that it is similar to Cytoxan but not as hard on the patient. I have been on 18 mg for several months and I feel lucky that I seem to have no side effects from it. During my most recent flare the first thing my doctor did was to increase my methotrexate from 12.5 mg up to the 18 mg. I immediately felt better but after about a week I started back down hill again. I really had my hopes up that it would be enough as it seemed to work so well for those few days.

My own sense was that it was helpful to me but could not keep up with the progression of the flare in my case. So I had to get a Rituxan infusion again. It had been over a year since my last Rituxan. I had hoped not to use it again but it became necessary.

I was on Cytoxan for about 8 months and then was switched to methotrexate, which I've been on for about 7 years, and it has been successful mainly as a maintenence med. But I have heard of it being used as the first line of defense, mainly in people with lighter cases of WG/GPA, so far, such as only having sinus/ear involvement and maybe some joint pain. In many cases today, Rituxin is considered the standard, but since it may take up to a couple months to kick in, Cytoxan is sometimes given while waiting for it to do so. I think this would be especially important for those with severe disease.
I can sympathize about your tinnitus, as I have it myself, though it's probably not as loud as yours, and I've kind of gotten used to it. It certainly doesn't help when you are already having to make an effort to hear. I tried a homeopathic treatment for it once, before dx, and it may have helped a bit. I don't know if I believe in homeopathy, but with tinnitus, one might try anything. You could ask a naturopath or even an acupuncturist if they think they can help. I've never been to either, so wouldn't know what to expect. But I wish I knew more. The tinnitus could go away or lessen on its own, and I hope it does.

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I guess I can finally say I'm part of this community, I was formally diagnosed with GPA after another ANCA test came back positive. The PR3 and MPO are still negative and my rheumatologist said it's not a slam dunk for Wagener's but all signs point to it so we are going with that. I saw a pulmonologist and he also felt a biopsy might not be helpful so we are just going with that diagnosis. Part of me wanted to push for more firm evidence from a biopsy but then I would have to wait on starting treatment and I didn't want to do that.

I started on 60 mg of prednisone last Saturday and will be tapering off within the next few months, going to 30 next week. My rheumy said a new study just came out that shows shorter duration of prednisone can be as effective as longer courses for Vasculitis which I'm glad about because I hate taking it. I am also getting my 1st dose of Ritaxan on 3/9.

I'm already feeling better after starting the prednisone. My hearing is a little better I think, although tinnitus is still there but thats probably permanent. My chest pain is gone and I'm not sneezing as much. I just hope it stays that way when I go down in the dose.

Its frustrating to know I could have avoided the hearing loss and tinnitus entirely had I been diagnosed before the sensorineural hearing loss set in. I just hope one day a cure for tinnitus is found.