User Tag List

Likes Likes:  53
Page 2 of 2 FirstFirst 12
Results 11 to 16 of 16

Thread: Possible Wagner's but still in limbo

  1. #11
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,939
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wegner's but still in limbo

    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!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  2. Likes Masha, me2, Alysia liked this post
  3. #12
    Join Date
    Apr 2010
    Posts
    842
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wegner's but still in limbo

    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.
    Last edited by me2; 01-28-2020 at 06:00 AM.

  4. Likes annekat, Masha, drz, Alysia liked this post
  5. #13
    Join Date
    Jan 2020
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wegner's but still in limbo

    Quote Originally Posted by me2 View Post
    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.
    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.

  6. Likes annekat, Alysia liked this post
  7. #14
    Join Date
    Apr 2010
    Posts
    842
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wagner's but still in limbo

    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.

  8. Likes annekat, Alysia liked this post
  9. #15
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,939
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wegner's but still in limbo

    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.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  10. Likes me2, Alysia liked this post
  11. #16
    Join Date
    Jan 2020
    Posts
    8
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Possible Wagner's but still in limbo

    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.

  12. Likes Pete, Dirty Don, me2 liked this post
Page 2 of 2 FirstFirst 12

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •