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Gwenllian
05-20-2008, 04:02 AM
Hello!

I've been struggling with Tracheal Stenosis for over 7 years, but now that i've had Ritixumab it's almost all gone! It's amazing. I hope it'll never get that bad again.

Is anyone else much better stenosis wise, after treatment?

Gwenxxx

jspelk325
05-20-2008, 04:51 AM
I've had sub-glottal stenosis for 10 years. for 6 of those it was so bad that i needed a tracheotomy, and towards the end lost my voice. My wegeners went into remission with remicade and methotrexate, but the damage was already done to my throat and especially my voicebox. Luckily, some brilliant docs at the Cleveland Clinic were able to reconstruct my voicebox just last december. Giving me a permanent voice and making me trach-free. I'm litterally in the best health i've ever been in since being diagnosed with WG over 10 years ago. If you ever have serious throat problems that cant be solved by meds alone, DEFINETLY go to cleveland.

jspelk

andrew
05-20-2008, 05:45 AM
I've been struggling with Tracheal Stenosis for over 7 years, but now that i've had Ritixumab it's almost all gone! It's amazing. I hope it'll never get that bad again.


Great news Gwenllian! Glad to hear it, well done!


Luckily, some brilliant docs at the Cleveland Clinic were able to reconstruct my voicebox just last december. Giving me a permanent voice and making me trach-free. I'm litterally in the best health i've ever been in since being diagnosed with WG over 10 years ago.

Congrats! That must be an amazing feeling to be rid of that - almost like being made new :) I've heard good things about Cleveland Clinic from many people.

dalzielette
05-20-2008, 02:27 PM
jspelk: You didn't happen to meet up with a Dr. Langford at Cleveland Clinic did you? I had her as a child at NIH and then she moved to Cleveland... just curious. She was wonderful.

jspelk325
05-20-2008, 08:50 PM
no, but i know who you're talking about. I think i was actually supposed to see her, but i ended up seeing Dr. Hoffman, who's their top WG guy. Super nice guy too. But i also have heard amazing things about Dr. Langford. CC evidently has all the best WG docs. too bad i live in LA. But it was worth the trip. i spent most of my time with the ENT's.

Gwenllian
05-27-2008, 04:18 AM
Once youve found a good doctor, you just don't want to let them go! :)

andrew
05-27-2008, 05:14 AM
Once youve found a good doctor, you just don't want to let them go! :)

Too right! I've been so lucky with doctors. I have a brilliant GP and Immunologist. There's no way I'm moving from this town unless they do :D IT takes so much of the stress away when you know that you can trust your doc.

Marcy
08-20-2008, 11:37 PM
just saw this thread and wanted to say that Dr. Langford is my doctor at the clinic that cares for me and my WG. she is amazing!!!!!!!!!!!
Marcy

Marcy
08-20-2008, 11:39 PM
who was your ENT at CC? I used to see Dr. Lorenz, he is a true expert in his field but unfortunately he is now out of the US working in Abu Dabi United Emeretts (sp?). I can't remember the name of the doc taking over his patients, I hope the replacement is good.

Mike
11-28-2009, 10:13 AM
Excellent. I am over the moon for you.

Mike

ticklytoes
12-29-2009, 10:16 AM
Hi Gwenn!
So glad to her that your in remission! We are working on mine...I have a very limited form of Wegener's with only my ears and trachea affected. I had severe ss in Feb. 09 and had to be trached as a result. Since then, I have been on 5 MTX weekly and Prednisone. This is our seconf time trying to taper the Pred. and seems as though 8mg is as low as I can get before my PR3(ANCA) becomes slightly positive again. I was just curious to know your story with RIT and if you could message me with more info, ie, how long you were on it, how often you took it, etc...I REALLY want this trach out, and seems like I need a new plan. I am willing to try anything, especially since you said it worked for you! Thanks, Nicole

coffeelover
12-30-2009, 10:26 AM
How much pred are you on? My rhuemy is also a bit hesitant to lower my pred more than the 10 due to the same problem. I go back in Jan and will discuss it again.
Lisa

ticklytoes
12-30-2009, 03:06 PM
hey lisa...
I am on 8mg right now...suppose to taper to 7mg Friday, but Im scared ;( how are you

jola57
12-30-2009, 04:11 PM
I am on 10mg pred now and 10 mtx. I am tapering very slowly by 1mg per month or even more. Last tiem I tapered too quickly and ended up on cyclo for a year. My cAnca is above 200 so they don't even measure how much. I do feel fine and so cAnca may not a good indication for me as to if I'm flaring or not. I am recovering from a cold which was mild, just have some coughing issues which hopefuly will go away soon. Don't be scared just take it very slow, even half the 1mg and take 8.5 for a month. Let your body get used to getting a little less.

elephant
12-30-2009, 11:14 PM
I am decreasing my prednisone 1 mg a month. I'm on 6mg right now and in Jan I will be on 5 mg of Prednisone. I think I will stay on 5 mg longer, since I have lung and sinus damage both pulm and ENT think that I will have problems if lowered under 5 mg of Prednisone. I will discuss this with my Rheumy Jan 5.

annette06
12-31-2009, 12:25 AM
Hya Gwenllian
I am having problems with my Trachea,recently been in Hosp for my windpipe to be dilated (via a balloon),am due to see a Rhematologist for the first time 05/01/10.I am currentley taking Cellcept but hopefully my medication will be reviewed on Tuesday i am going to mention Ritixumab to him.How does this medication work.
I have had Wegeners Granulomatosis for nearly 7 yrs affecting my nasel space , my hearing,joint pain.
Keep well
Annette x x

Sangye
12-31-2009, 01:54 AM
Hey, there's a bunch of us tapering pred by 1 mg a month!

I'm on 4 mg but won't start tapering until after the holidays-- keeping a promise to my JH doc because it's hard to get proper care if something goes wrong. He said to drop 1 mg a month and to stay at that dose for minimum 1 month and longer if I feel it's necessary. But NOT to drop faster than 1 mg/ month.

I'll probably start by dropping 1/2 mg at a time and see how it goes.

Jack
12-31-2009, 04:08 AM
I've tried to get below 10mg several times now and seem to have problems no matter how slowly I change so I'm resigned to the fact that I must stick with this level.

elephant
12-31-2009, 04:48 AM
It is trial and error with Prednisone. Annette, wish you the best. I'm on cellcept too, along with cyclosporine and prednisone. Holding my own and hoping no flares. I know if I get a flare depending the severity of it I will probably have to be on the Ritixumab.

Jack
12-31-2009, 05:34 AM
I did not know that cellcept and cyclosporine could be used together. I switched completely from one to the other (cellcept 720 mg/day) and have had no Wegener's flares since.

elephant
12-31-2009, 06:46 AM
They are trying to supress my immune system more . I always was on cyclosporine since 1989 (kidney) transplant. Then they started the cellcept in March 2009 and they want to keep me on cellcept and cyclosporine. Jack your only on cellcept and prednisone for the wegeners and kidney transplant?

Doug
12-31-2009, 06:58 AM
Gad! I'm with Jack on that one, elephant. I always thought CellCept was the drug of choice once your WG was in reasonable control and you'd been on Cytoxan to a point where most doctors and the manufacturer recommended use be discontinued. Sort off a 'tough cop - easy cop" scenario, with Cytoxan the tough cop that kick WG butt until your immune system was sufficiently suppressed for you to start feeling much better if not over the flare. Is your doctor splitting the difference? I mean, were you put on a much lower level of Cytoxan at some point, with CellCept put in to even the load?

p.s. I just noticed elephant's reply. This is a much different situation that a typical WG flare, or perhaps where a flare did more damage before the diagnosis, so a stronger attack on the immune system was needed to deal with the double duty of a flare plus kidney replacement surgery. The Cellcept would be milder that the Cytoxan, so the combination, I'm guessing, would help elephat's immune system to come into control without absolutely poisoning the patient! Is that closer to what you understand, elephant?

Jack
12-31-2009, 07:21 AM
Jack your only on cellcept and prednisone for the wegeners and kidney transplant?
Yes, cellcept 720mg/day and pred 10mg/day. I can't get lower than that without getting problems with eustation tubes and leg/foot pain, but still no Wegener's flares. Of course, I also take a lot of other junk for blood pressure, bone strength, stomach, lungs etc. etc. ;)

(just had a count up and there are 14 different medications in my pill box although one or two are only used when required and that is with me trying to minimise the amount I take)

Doug
12-31-2009, 07:53 AM
Good luck on the road to minimizing the number of pills you take! I'm down Bactrim for remission maintenance, Furosimide for swelling in my feet (I did have serious kidney involvement during the flare, and lost some function), and two pain pills related to postherpetetic neuralgia. I kind of look at that number of pills as a measure of how well I'm doing, Jack, and remind myself from time to time just how long the road to the "new normal" was: There were several blips along the way.

elephant
12-31-2009, 08:11 AM
The Rheumy( local) talked long and hard with a bunch of rheumy one in Charleston and Carol Langford about what to do with me. I had a lung nodule really bad sinus, facial pain, joint pain....but no blood or severe shortness of breath. So they want to do a less invasive approach and do the cellcept 2000mg, cyclosporine 150mg and at the time Prednisone 60mg ( which I was on twice). So they are hoping this will work. They didn't want to cause damage to my kidneys and risk of cancer ...ect.. I am on so many other drugs Jack that the pilll bottles fall out of the cabinet. There would be more pills to take but I refused to take them. I can't afford another side effect. I might take them later, but right now enough is a enough.
Jack that is good to know that your on cellcept for both, mabey I can some day. Thanks Doug for the input. ;)

ticklytoes
01-01-2010, 07:31 AM
I am on 8mg of prednisone and 5 tabs of mtx weekly...i am considered in remissiion, but when i tried to taper to 7mg, my pr3 became positive again, of course, we were tapering 1mg every 2 weeks, and i see that minimum should be 1mg every month. if i have the same luck when tapering to 7mg again, does anyone have any suggestions about what to try next? should i switch from mtx to cellcept? what do u guys think? i havent had to be on cytoxan bc i have limited wg. but, i would like to see remission with lower doses of pred. Nicole

ticklytoes
01-01-2010, 07:32 AM
btw, i am tapering slower now, 1mg every month...and i have a trach.

elephant
01-01-2010, 07:53 AM
I learned from this forum to decrease the prednisone down 1 mg a month. I told my local Rheumy that's what I am doing and she was OK with that. So far so good, I am down to 6 mg and I think I will stay a 5 mg for a while and decide what to do and of course talk with both my Rheumatologists. Both my ENT and pulmonologist stated that I will get worse once I go below 5 mg of Prednisone, My concern is that I have glaucoma and forgot to mention it to my pulmonologist. He put me on what I thought was symbicort but got Advair diskus. I am not interested in using it. I will have to look into it more.

coffeelover
01-01-2010, 08:26 AM
[QUOTE=ticklytoes;8702]I am on 8mg of prednisone and 5 tabs of mtx weekly...i am considered in remissiion,

I AM TRYING RO FIGURE OUT WHY YOU STILL HAVE THE TRACH IN IF YOU ARE CONSIDERED IN REMISSION? Something else needs to be done to help move you towards trach removal, unless there is permanent damage?
I too would love to get off the pred, but 7 mg sounds like heaven to me....I hope I can get there soon
Lisa

ticklytoes
01-01-2010, 01:14 PM
lisa
my ent wants me to be on the lowest dose of pred. that i can be on before he does the surgery to remove the "webbing" in my airway...i achieved "remission" in july and so e started tapering 1mg every 2 weeks. once i got to 7mg, my pr3 became positive again, so she started a 10mg every other day...this made my pr3 go even higher, and i lost substantial hearing and had to go to the er for iv dosed steroids. my ent app at vandy was the very next day, and we were gonna talk about getting it out then, but since all that had just happened, he was hesitant to do anything in fear that i wasnt stable enough. i guess he just wants my airway to be as stable as possible bc he said he did surgery like mine to remove a pt. trach and it caused a flare in the airway and she lost her voice and had to be re-trached :( so, hes being very precautious about the remission stuff.

ticklytoes
01-01-2010, 01:18 PM
i go back to the ent on jan 27th. we (the rheumy and me) are trying the taper again...its time to taper to 7mg, but im not until next month bc she wants me to start giving myself mtx injections for this month to see if they may work better since they are better absorbed. i will go do bloodwork at the end of the month to see if there is any extra improvement. if so, we will trudge forward with the tapering :/ wish me luck!

Sangye
01-02-2010, 03:55 AM
I so hope the mtx injections work great and that you can start tapering the pred soon after!

pberggren1
01-02-2010, 10:11 AM
Ticklytoes, what did you mean by webbing in your trach?

moyan
01-03-2010, 03:08 AM
Hi, when first diagnosed I went for bloodwork every week. When kidneys seemed somewhat stable I started going only once/month. Doc is fine with that.

ticklytoes
01-03-2010, 03:58 PM
well, my ent at vandy called it webbing, but basically its just where the tissue of my airway was inflammed to the point where it was only open 5mm wide...the size of a straw. not sure why they used that term...it looked kinda like "webs" when i saw the pic...blood vessels were inflammed and running thru the tissue. its much better now...going back on jan 27th to talk to the ent again. maybe hes ready to take the trach out by then...everyone pray and keep fingers and toes crossed!

elephant
01-03-2010, 09:49 PM
I have my finges and toes crossed for you ticklytoes. I will pray for you too. Ticklytoes, I have been weaning myself so carefully off prednisone. Actually I am on Prednisone 6 mg and decided to stay on that for one more month. Once I go to Prednisone 5mg, I plan on staying there for 6 months. Just don't want to start a flare. I really don't have any side effects from the Prednisone right now, because its a low dose. Good luck to you again Ticklytoes. :)

Sangye
01-04-2010, 07:38 AM
Good luck, Ticklytoes. I really hope that it works out to remove the trach soon. I remember when Lisa (Coffeelover) got hers out last year, she said she couldn't stop talking for days.

Doug
01-04-2010, 01:12 PM
Tickleytoes- It's sounding good for you, and I definitely will "web" my fingers and toes together on the hope that it will get that trach out!

coffeelover
01-11-2010, 01:46 PM
Ticklytoes.
My trach too was in because of less than a straw width for air to pass through and I have been trach free now for 7 months. Almost as long as I had the trach in. I wish that your news is good. I wish it so much for you! I have refused any cosmetic surgery regarding the area where the trach was becuase It helps keep me grounded and reminds me to take care of myself.
I know when you've had a trach in they are not as quick to lower that pred dose,,,,so that is my next goal.
I am hoping, wishing and dreaming that your news is a trach free area. Sangye is right....I couldnt shut up after getting mine out! I also took my trip to Colorado as my "trach out" trip so it became a continual celebration and one that I wish for you
Keep us informed
coffeelover

ticklytoes
01-27-2010, 02:25 PM
Hi guys...so disappointed bc they called and rescheduled my ent visit until feb 24th! Now i have to wait another whole month. I was soooo excited to see what he was gonna say, but everyone keeps telling me that it was just God's timing, and somehow, I believe it. Now, I feel SUPER confident when I go at the end of feb, he will be more likely to discuss my trach removal. :) thanks for the thoughts and prayers...keep it up please! I need all I can get ! praying for you guys too... Nicole

elephant
01-27-2010, 09:40 PM
Sorry to hear that Nicole. It will go fast and soon enough it will be feb 24. How are you feeling?

ticklytoes
01-30-2010, 03:01 PM
elephant,
im feeling pretty good. no real issues at the moment. i go for bloodwork next week, so wish me luck. how are you feeling?

elephant
01-30-2010, 03:12 PM
Since I upped my prednisone to 10mg I feel less tired, but ears are ringing off the hook! So I will probably get another hearing test... otherwise I am OK and staying really on top of my symptoms. Thanks for asking.
Tickllytoes, good luck on your blood work. Glad you are doing good!

kathy.parkerwhite
09-10-2014, 05:05 AM
Gwen and Andrew you both are very fortunate to be feeling so well I congratulate you both! I doctor at the Mayo Clinic and I was diagnosed 11 years ago. I don't seem to be able to stay in remission so I keep taking treatment 2 to 4 times a year! The prednisone is the worst talk about weight gain!! But I'm still here and I have a supportive group from family to friends so that means everything to me. I love to hear positive outcomes though they make me happy to know others have fought this disease and won the battle! Keep up with the great progress you two! [email protected] Sincerely, Kathy

mrtmeo
09-11-2014, 06:25 AM
Hello!

I've been struggling with Tracheal Stenosis for over 7 years, but now that i've had Ritixumab it's almost all gone! It's amazing. I hope it'll never get that bad again.

Is anyone else much better stenosis wise, after treatment?

Gwenxxx

How long after the first rituxan did it clear up?

miracleshappen08
11-09-2014, 01:29 AM
My stenosis started just before my Ritixumab treatment but it did stay open for 3 months longer after the treatment. But I'm now back to having surgeries done everything 3 months


Miracles do happen!!

kathy.parkerwhite
11-09-2014, 01:51 AM
I am so sorry that you have to deal with having surgeries after surgeries! I get disappointed when they tell me I have to have another bronchoscope but that is nothing compared to what you are going through! I can never stay in remission and now I have developed colon cancer so I am going in for surgery soon for that but my situation is minor compared to yours and I feel foolish for feeling a little bad about my situation! I will keep you in my prayers miracleshappen08! Kathy P.

miracleshappen08
11-09-2014, 02:04 AM
Thank you! You know even what you go through is a lot!! I hate having the scope!!! It is so uncomfortable! The pain you go through is no less then mine. You still have to keep you head above water. It's hard for anyone!! I have been through a lot but I don't want people to feel like theirs is nothing compared to mine. I will keep you in my prayers. We need each other!! Blessings


Miracles do happen!!