New Member my wegeners story

[BHorton]

KHi my name is Breanna Horton I am live Terre Haute, IN, I just turned 22 and just got married! I got sick when I was 17 I went from 135 pounds to 117 in two months. I had eye involvement and nose involvement were my first symptoms that I knew of. My PCP diagnosed me with also ulcercolitis which is what my father has and is an autoimmune disorder a few weeks after he diagnosed me I had a colonoscopy, The doctor who did my colonoscopy told my mother that my colon was perfectly healthy and he couldn't understand why the doctor has diagnosed me with ulcerative colitis and ordered for a colonoscopy when I had no symptoms of that disease.

Found out after going to many doctors who told me over and over there was nothing wrong with me that there was more going on then I knew. I finally requested my medical records and went to see a new PCP, that told me I needed to see an eye specialist, who then referred me to a Rheumatologist, he then informed me that my labs from my PCP that had been my doctor since I was 11 showed that I had blood in my urine for 2 1/2 years! The Rheuatologist told me my labs were really abnormal, and he wanted me to see a nephrologist for my kidneys. The nephrologist wanted a kidney biopsy and by then I was close to my losing my mind, I jump on it so fast. They did the biopsy a few days later and the next week the doctor called to inform me that I have what is called (wegeners Granulomatosis a form of vasculitis!

At that point I felt like a weight has been lifted and we made the journey back to Indianapolis to come up with a treatment plan, which ended up being Rituxan prednisone and Imuran, sulfameth is also called Bactrim. My boyfriend who is now my husband drove me up to the hospital in Indy to start my first round of Rituxan before they could even get the reduction started I had an allergic reaction and they had to stop, we decided on Rituxan because it was safer for me and wouldn't hurt my chances of having children later on.

I was so upset to find out that I was going to have to start Cytoxan One of the nurses at the hospital before I left heard me over talking with my boyfriend about Cytoxan and suggested a shot called Lupron which would shut my ovaries down for six monthas of having children. I wasn't prepared for the symptoms of the Lupron added with the symptoms of the chemotherapy.

I am happy to say it's been four years and I have been in remission for three months. I have have a very common upper respiratory infection that I get about twice a year. I am currently on Imuran and Bactrim for routine therapy treatment my biggest problem now is not being able to breathe through my nose like I used to and want to know if anyone else has had this issue and what they've done Anything is greatly appreciated thanks and God bless.

[Pete]

Hi Breanna! Welcome to the Forum. Feel free to ask questions, share experiences, and vent your frustrations.

Your allergic reaction to Rituximab is rare, but not unheard of. Did they give you a steroid (usually solumedrol) and an antihistamine before they started the infusion? Most of us on here got those and were able to complete the treatment.

There are several women on here of childbearing age. I expect they'll chime in to share their experiences. Hope that all works out for you.

A question you may want to ask your rheumatologist is how many cases of GPA/Wegener's they see in a year. If the answer is small (<25 or so), you might request that they consult with a Vasculitis specialist. Lists of specialists can be found online at the Vasculitis Foundation or at the Vasculitis Patient Advisory Network websites.

Good luck!

[BHorton]

Hi Pete, thanks and yes I have asked he has many patients with wegeners! Yes I do believe they did give me a steroid along with I believe Benadryl and I started to have trouble breathing and so that's when I stopped the treatment. I have only met two other women from the town I am from that also have wegeners, and it kinda nice meeting other people that deal with this and hearing about there treatment!

[annekat]

Welcome, Breanna, and I'm glad you found us! Congrats on reaching remission, and I take it the Cytoxan worked pretty well for you. I know there are women who are members here who have gone on to have babies after CTX. You might find some encouragement by searching the archives. I'm way past childbearing age and was dx'ed at age 58, so that is not an issue for me, although I did use CTX successfully. The main thing I can say about the forum is that it made a huge difference in my being able to deal with the dx, and I'm forever grateful for its existence and this great group of people.

As for why you can't breathe through your nose... I don't know, unless something has changed in there. Do you have saddle nose? Could there be polyps or other growths in there? My septum, sinus bones, and other bony structures in my nasal cavity are eroded by Wegs, so there is not as much place for stuff to collect and cause breathing problems. But even before that, I've never had a lot of trouble that way unless there was lots of mucus, swelling, and congestion in there. I know there are people on here who have that problem chronically, though, who will likely respond. Have you seen an ENT lately? Do you do sinus irrigation with saline? An ENT might be able to clean things out well enough to give you some relief. The upper respiratory infection you keep getting can't help. I hope you get some answers, and keep us posted.

[vdub]

Super that you found our little corner of the world! Welcome to the site!

[Alias]

Breanna, I definitely relate to your difficulty with breathing through your nose. WG attacked my nose and ears. Although I am in remission, I have symptoms that will just always be there due to the irreversible damage this disease can do to tissues. I have serious hearing impairment in one ear and some eustachian tube dysfunction in both ears that varies from day to day. Combined with the damage to my nose, this makes me feel like I always have a head cold, sometimes mild, sometimes terrible. I find the breathing issue you describe to very frustrating sometimes. It interferes with sleep, exercise, eating... and is just generally annoying. Sound familiar? In my case, I have scarring in my nasal passages that has made my nose unable to function normally, as far as filtering air, lubricating and cleaning itself, etc. I use daily nasal rinses, which provide temporary relief. In addition to the saline rinse, I have prescriptions for two medications to include in the rinses in order to reduce inflammation and help prevent infection. These are Budesenomide and Bactroban. The Bactroban can also be used topically, which for me is especially helpful at night. A cool mist humidifier can also be helpful. If you have not seen an ENT as part of everything you have already been through (which is a lot!) you might want to get a referral from your nephrologist or rheumatologist, or just find one on your own. (Just be sure that the ENT knows about your diagnosis and has some experience with it.) The ENT should be able to tell you what is going on anatomically with your nose, i.e. if there is scarring or something else interfering with air flow and whether anything can be done to correct it. He/she should also be able to give you some guidance on medications and self care. I hope you find some relief! I know I and others here would be interested to hear if you learn anything new about how to deal with this problem. Best wishes.

[mishb]

Hi Breanna and welcome.

I also can relate to the difficulty breathing through your nose......in fact, I haven't been able to do so for the last 5 years.
I also am unable to smell anything, which is most cases is a blessing

I'm so glad you finally found the answers to your troubles and that you were treated quickly and found remission. Awesome news.

Take care

[Jayne 14]

Welcome Breanna
I am glad you found us , help & knowledge whenever u need it
I have nose issues too , sometimes I can breathe , before I was diagnosed I couldn't !!
Rinsing & steaming helps
Well done for remission here's to your future .


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[Jaha]

Welcome to the place to come for answers and other such communications, from the people who have been there. I'm happy to hear that you are in remission. I have had various reactions to rtx and am having them every six months. They pretty much have to stop them every time and give me more Benadryl and Tylenol. I wish you all the best!

[morningsunshine]

Hi Breanna!

I wanted to say welcome and that I'm a fellow 20-something female Weggie (I'm 27). I'm so sorry about it being difficult to breathe through your nose and about reacting to RTX, but I'm so glad to hear you have achieved remission. I got lucky and have responded well to RTX so far, so I haven't had to go the CTX route. Still, the doctors constantly remind me not to get pregnant because of MTX and Reclast. At this point, for many reasons, I don't think that having children is in the cards for me, but I hope they are for you, if that is something you want!

This board is a great place for finding information and comfort. Welcome!