Another Newbie from Texas

[Miska]

Hi, I am from Houston and have been recently diagnosed with limited wegs. It started last year about 2 months after the birth of my daughter. I started having difficulty swallowing and breathing. I lost my hearing in my left ear. And allergies that would not go away. After multiple misdiagnosis's (TB to lymphoma) they finally got a large enough biopsy to suggest wegners. I did have negative anca. So now I am starting the methotrexate ( I have been on 60 mg prednisone for a long time due to the fact if I get off of it I have to be intubated). I have never been happier to be diagnosed with something! Yes it stinks but now I have something to work with. My only wish is that some of my energy returns. Can't wait to get to know you all.

[Pete]

Welcome to the club, Miska.

You'll get a lot of good info here, and there's usually someone on here 24/7 who can answer your questions or empathize with what you're experiencing.

Questions: Do you have a vasculitis specialist? If not, does your doctor consult with one? Here's a list of vasculitis specialists for your reference: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

I can understand the high dosage of prednisone as you have some other problem that requires intubation if you're off it. Perhaps this is another effect of GPA/Wegner's. I'm concerned that methotrexate as an initial medication may not be strong enough to arrest the disease. Many of us on here have had either cytoxan or rituximab to arrest the disease and bring about remission. You may want to ask your doctor about this.

As for your energy returning, it will once your disease is under control. There's one woman on here occasionally who has climbed Mt. Everest and has run the Iditarod (as I type) since she was diagnosed. I'm also almost back to normal walking 2- 3 miles a day and doing some light weight training several times a week. Just start slowly and increase very gradually.

Good luck and better health!!

[Miska]

Thank you Pete. Yes my doctor specializes in vasculitis. He told me that so far my problems are only affecting my upper respiratory system, my lungs and kidneys are clear. He wanted to use the methotrexate due to that. Then I will taper pred and see if the difficulty breathing returns. If it does then we will try rituxan with the pred again. I hope this works.

[mishb]

Hi Miska and welcome to the forum.

I'm glad you have the right doctors and that treatment is going well........apart from breathing - but hey, who needs to breathe right :flapper:

Gosh it must be doubly hard for anyone to be sick and have a brand new baby to take care of - you poor thing.

Pete mentioned that there is someone on here 24 hours a day. I'm from Australia, so if you are up late at night, then you will find us Aussie's lurking around.

Take care and ............

[windchime]

Welcome Miska, As I'm sure you've discovered there is a wealth of information on the sight and the most caring, helpful and just plain wonderful people to help you. The term limited wegs is somewhat of a misnomer. The medical community is getting away from using that term as wegs is wegs. It can be pretty devastating no matter what part of your body it hits. I too was diagnosed with limited wegs many years ago and here I still am currently in treatment for a flare.

I'm glad you found us and hope you continue to visit and participate in the forum. Good luck with your drug protocol. I'm having a hard time reducing the pred from 25 mg. Every time I try I can't breath very well. So you aren't alone there. Enjoy your new daughter and try to remain stress free. Hugs to you. :hug2:

[Alysia]

Hi and welcome.
welcome to our weggie family. I hope you will regain your energy soon and be able to enjoy your baby.

[BookNut]

I have to share what someone on this forum shared with me. Putting the asthma inhaled steroid, budesonide, into my usual daily Neilmed nasal rinse has been like turning off a faucet. I do NOT have wegeners....just a nasty and chronic sinus disease. But evidently this method has been helpful to many who have WG that manifests as mainly respiratory in nature. I've tried numerous meds, but this is the one thing that has helped me. The reduced flow of mucus has significantly reduced my coughing and wheezing. and my energy is returning. As soon as it warms up a little, i plan to start my regular 3-5 mile walking regimen!! Good luck! And let me tell you...you have found the BEST resource out there. these folks are amazing!!

[KimH]

Hi, welcome to the forum. Everyone here has been a tremendous support and have become caring friends. This is the place to be . I hope the medicine starts helping you so you get your energy back.

[DJS]

I lost my hearing in my left ear. Yes it stinks but now I have something to work with. My only wish is that some of my energy returns. Can't wait to get to know you all.
Welcome from me as well! If your hearing is gone for ever, as was the case with my wife, there is a fix for that. It is called BAHA. Something about bone adaptive hearing aid. Google it, to learn more, and ask questions as several on this forum have them.

Dennis

[Miska]

Thank you all for the wonderful welcome! Y'all have already given me great advice. I will try the inhaler trick. I am on a different right now. I need to see if my rheumatologist will get me that one. And the hearing aid...definitely need to see my ent. He did tell me a regular hearing aid would probably not work with this type of loss. Any one else told this? The baby is keeping my mind of how bad I feel. She is 10 months and getting around a lot more. Sure makes me tired.��

[annekat]

Welcome, Miska. You've already gotten a lot of good support and advice from others here, but just want to say I'm glad you found us and hope you will be a regular participant on the forum. Feel free to ask or share anything, and also try some searches of the archives on any specific areas of interest. This is an awesome forum and I don't know what I would do without it.

[drz]

Thank you all for the wonderful welcome! Y'all have already given me great advice. I will try the inhaler trick. I am on a different right now. I need to see if my rheumatologist will get me that one. And the hearing aid...definitely need to see my ent. He did tell me a regular hearing aid would probably not work with this type of loss. Any one else told this? The baby is keeping my mind of how bad I feel. She is 10 months and getting around a lot more. Sure makes me tired.😴

My BAHA (osseo integrated hearing aid is new term) really improved my quality of life as it restored my hearing partially along with regular hearing aid in other ear. Phil has the cochlear implant and also got great results from his. Not hearing is a real downer.

[pberggren1]

Miska, can you show us a copy of your latest audiogram?

[pberggren1]

Also Miska, have you had a full audiological work up with a brainstem response test? What type of loss do you have?

[Miska]

I have had my hearing loss for a while. In fact I was diagnosed with Meniere's Disease do to the loss. Of course that has since been dismissed due to my other issues I started having. (Sinus and then the granuloma in my arytenoid fold). I have neural hearing loss. My last test showed it went from 60% to 80% sub loss. So no one whisper cause I can't hear ya! I don't have a copy of the audiogram range.

[pberggren1]

I'm sorry Miska you have such severe loss. Do you even have hearing aids? I have heard of other Weggies being diagnosed with Meniere's disease long before being diagnosed with Wegs as well.

[Miska]

Thank you Phil. I don't have hearing aids. Only one ear is that bad. My other i can still hear pretty well out of. My rheumatologist wants me to be off the pred before I have my hearing reevaluated. So I wait.... The hearing is the least of my worries right now. I think I am having methotrexate side effects. Stomach upset, sore finger tips, and just a general yucky feeling. I am on 15 mg a week and 60 pred a day.

[pberggren1]

Are you just getting over a flare? 60mg of pred is a high dose.

[Miska]

I have had a mass in my throat(it's in the arytenoid fold above my right vocal cord) for almost a year. I have had several rounds of steroids to shrink it so that I don't have to be trached. So I am off and on them all this time. I had the tumor partially removed (it's in a tricky spot) to find a granuloma. But they can't remove it all. So they are trying methotrexate and pred to see if it makes it go away. I am praying! One thing that has gotten better is my sinuses. I am on my second week of hIgh dose. Next week I start my taper.

[pberggren1]

I'm sorry to hear about your throat. Does it hurt? Does it affect your voice?

[Alysia]

I have had a mass in my throat(it's in the arytenoid fold above my right vocal cord) for almost a year. I have had several rounds of steroids to shrink it so that I don't have to be trached. So I am off and on them all this time. I had the tumor partially removed (it's in a tricky spot) to find a granuloma. But they can't remove it all. So they are trying methotrexate and pred to see if it makes it go away. I am praying! One thing that has gotten better is my sinuses. I am on my second week of hIgh dose. Next week I start my taper.

maybe MTX is not strong enough. maybe you should get something stronger like RTX or CTX.

[Juliesjewels]

Miska, what's the name go the vasculitis dr you see in Houston? Thank you


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[Miska]

Sorry for the long pause, time is flying by. Phil, the throat is very painful. I usually have no voice. When it comes back, I sound like I have smoked my whole life. I can't eat without choking and have to sleep sitting in the recliner so I won't stop breathing. Since last time we spoke I have done 5 rounds of MTX and pred. I had to stop the MTX because of stomach issues. The last dose I had gave me stomach spasms and flu like feelings. At the Rheumy right now to see what I do next. With all of the pred, my throat is much better. Now my sinuses are acting up. Is it normal for symptoms to jump around? Some days sinuses are worse, some days joint pain.... Julie, I see Dr. Filemon Tan. He is at the UT Physicians Building in the med center by Memorial Hermann.

[Juliesjewels]

Thank you, Miska.


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