Hi, I'm new here.

[AmyA]

Hi, my name is Amy. I was diagnosed in June 2011. My case started with mild allergies and sinus issues, but in September of 2010 I had a root canal and it was down hill after that. I developed a really nasty cough with no production. I went to two different doctors in October and November and both times was given an antibiotic and cough medicine. In late November I was talking to my pharmacist (I work in a pharmacy) about my symptoms. He sent me to a doctor right away. The third doctor took an x-ray and found a dark cloud in my left lung. I was sent straight to the hospital. After 4 days they sent me home on 2 antibiotics and a follow up appointment the following week. I got worse. I went back to discover the infection/pneumonia in my lung liquified and ruptured. The next day I had a 5 hour surgery to drain my lung. They were convinced I got a germ in my lung via my root canal. I was in the hospital for a week and went home with a chest tube. I had the tube for about 10 weeks and missed 3 months of work. I went back to work 3/1/11 and was doing ok until i started getting pain in my arms and legs. I went back to my family doctor and she did blood work thinking I had RA because my grandmother had it. After visiting the RA doctor she said I didn't have RA but ran a lot of blood work to check for Wegener's. I wasn't confirmed until a biopsy from my ENT. I started on Prednisone 60mg and Bactrim DS. In July I had four rounds of Rituxan and after completion of that also started Imuran. I'm currently still on Imuran 150mg, Bactrim DS, and Prednisone 5mg. I have been very blessed. The lesions in my lungs are shrinking and my kidneys have so far been barely affected.
I am so glad that I found this site and I have been reading a lot of people stories and it really feels good to know that even though some of the symptoms seem small, I'm no alone and not crazy for thinking them up :)

[drz]

Welcome to our forum. Sorry you have to join us but if you are looking for info and supportive encouragement to help deal with this nasty disease, you have come to the right place. Best wishes for continuing recovery and better health.

[Dryhill]

AmyA, welcome to the forum, I am glad you have found us and sorry that you had to. No you are not alone and definately are not crazy and making up weird symptoms.

Are you still in any pain and have you been able to return to work?

Jim

[Pete]

Welcome to WeggieLand, Amy. I'm relatively new to this site, but have found it to be very helpful. I'm glad to hear your lungs are clearing and that you're feeling better. I'm still on 100 mg/day of Cytoxan, 20 mg of prednisone (going to 10 next Friday), and 1/2 bactrim. After a flare in January, I'm feeling more like my old self, but I still have a ways to go to regain my strength.

I'm finding that I can coexist with WG, but I do need to be more aware of how I feel physically each day. The symptoms of a flare for me were subtle at first (fatigue, losss of appetite) but when the night sweats returned, I knew I had a problem. Unfortunately, I was sick for most of two months because I didn't move quickly enough.

Hope you find the support and info you need here.

Best wishes,

Pete

[Psyborg]

Welcome to the forum...sorry you need to be here.

[Dryhill]

....... 20 mg of prednisone (going to 10 next Friday), ........

Pete, I hope you are not just reducing from 20mg to 10mg in one go, this can be a very big shock for your adrenal glands. When I reduced from 20mg to 15mg I had to take 20mg one day and 15mg the next, alternating daily for two weeks. The same thing happened when I went from 15mg to 10mg.

Jim

[HopeinTN]

I too went from 20 to 10 in one day. It was brutal.

[Al]

Hi, Amy--Some things we can be glad about: you found us, you got the DX and are being treated, and you are doing better. Other matters are less happy. Most of us have experienced delays in diagnosis, but it surprises me that two doctors knew of yucky non-productive coughing (a red flag for WG), and non-curiously sent you home with nothing useful. Hey, doctors love to order xrays and CT scans; this would have been a perfect time to have done so. I'm glad you finally found a rheumy who took you seriously. You are correct: You are neither crazy, nor--here--alone. Let us know how your story progresses.

Al

[AmyA]

I have been steady working. I try if I can not to work a full 40 hours, but business in the pharmacy never slows. I still have some pain. Usually in my legs,feet,and back. Hard to tell if its from working on my feet and having two small kids at home, or the weg's. I try to keep a close eye on it.

[AmyA]

Thank you. I also hope you feel better soon (and stay better of course) :)

[Al]

I have been steady working. I try if I can not to work a full 40 hours, but business in the pharmacy never slows. I still have some pain. Usually in my legs,feet,and back. Hard to tell if its from working on my feet and having two small kids at home, or the weg's. I try to keep a close eye on it.Amy, it is likely a combination effect. Many Weggies have joint/feet pain, plus the hours and parental stresses can exacerbate fatigue--itself an effect of both the disease and the treatment. Presumably, your employer knows of your situation. Labor laws require disability accommodations; while this might not quite qualify as a disability, perhaps, since they like your work, you could request a stool at the counter, so your feet could at least have some rest now and then.

Al

[vdub]

You beat the statistics on time to dx! That's kind of impressive... Statistically, time to dx is 24 months. The important thing is that you got the diagnosis and the treatment. Good for you! Hang in there!

[Sangye]

Hi Amy, welcome to the group. I'm glad you finally got diagnosed. You went through some pretty frightening and painful stuff! I've heard chest tubes are particularly painful. I hope you continue to improve and keep posting. :smile1:

Pete, unless you've been on pred for less than 3 weeks, that is a huge drop from 20mg pred to 10mg. It's very hard on the adrenals, on the entire endocrine system and can cause Wegs to flare.

[annekat]

Welcome, Amy. This place is very important to all of us on here, and I'm glad you found it. I can really appreciate what you are doing, working and raising 2 small kids at the same time as having Wegs. I hope you have some support from family and friends so you can take a break and get some extra rest when you need to.

[dutch]

Hello Amy,
I am hoping for continued recovery for you. My 20 year old son was diagnosed last July. He was diagnosed pretty early, went on MTX and failed and then did 4 rounds of RTX. He did all of this while being a sophomore in college and trying to stay on the football team! This week he is no longer on prednisone!

Wegs is definitely a roller coaster ride for the patient and those who love them. The patients and families hang on test numbers and assess every little cough or ache. It becomes the new normal. People on this forum are very helpful and care.

Take care,
Karen

[Debbie C]

Hi Amy...I am relatively new here also but I have found alot of comfort and knowledge from these people that know longer seem like strangers to me.It's just sad that we had to meet under this forum and not all collectively cashing in on the mega ball !!!

[AmyA]

Thank you everyone for the wonderful welcome!! I have found more info here and it feels great to be able to relate to people who know exactly what I'm going through.

[gunnyl]

Welcome to the Group Amy and as others have stated, sorry you had to find it. I was diagnosed at a similar time to you and actually found this group while I was in the Hospital. Everybody here have been really helpful and informative to me. You found a good one!

[mishb]

Hi Amy and Welcome .............. although it sucks that you had to find out about us the way you did :crying:

Take care of yourself and remember to always ........

[elephant]

Welcome Amy, glad to hear you are doing better. You will get better. I had sinus/kidney and lungs involvement. Four sinus surgeries, kidney transplant and a chunk of lung taken out. I have to say if you keep on top of it and see a Wegeners Specialist you will be in good hands. I still see at least one doctor a week. We probably have seen the same doctors since we live in the same town.:)

[AmyA]

well, since joining last month I've had good news and bad news. Good news, my last ct and x-ray (lungs) showed improvement and thinning of existing nodules as well as some going away all together. But this month, I saw my E.N.T. and discovered I have subglottic stenosis. My E.N.T. was very upset by this and sent news to my rheumy to be very "aggressive" with my treatment. I am to increase my prednisone and imuran over the next two weeks. I was originally told to increase them both at the same time and that made me very sick. They also said I may have to do the Rituxan infusions again since it's been July since my last treatment. I am wondering..everything I've read says the stenosis is not related to the blood work or remission. Is it permanent? What can I expect from treatment? I've also started on prilosec.

[AmyA]

My main doctor is Dr. Lipsey at IMA. She's wonderful. I also see Dr. Curran (lungs) and Dr. Phillips (ent).

[pberggren1]

Subglottic Stenosis is not indicative of disease activity. It can come on even when Wegs is in remission. So I would be very careful with your ENT. My ENT never makes calls about Wegs. He says he only has 3 Wegs patients so what can I know about the darned disease? He always just gives his opinions about what is going on in my nose and such. Please be careful Amy. Do you see a Wegs specialist?

[AmyA]

I see a rheumy as my specialist. my e.n.t. doesn't make calls on my meds. he only gave me prilosec and informed my rheumy of his findings. I will see them back to back at the end of may to see if the increase in my other drugs is helping. plus, lab work on may 1st. my rheumy did say that it sounded like i wasn't headed to remission like they thought, so if the stenosis isn't a factor in remission, i guess my blood work will say otherwise??

[Al]

Amy, I can't advise you about stenosis, as that is not part of my condition. I can say, though, that many Weggies do indeed have stenosis of some sort. This may not show up on any sort of lab work, but it can make life miserable. Fortunately, there are some ways to allay this nuisance. I hope some of the other regulars check in about this.

Al

[Sangye]

Amy, check with JanW. She sees a leading specialist on stenosis in New York and can give you the best info about it.