Just diagnosed in sunny South Florida

[Julbkwrm]

Good Morning. My name is Julie, and I have been diagnosed for less than 2 weeks. The WG presented in my sinuses back in November, but I thought it was just a bad sinus infection. Nothing seemed to work. Went to an ENT and started Pred and antibiotics. Got a little relief, but nothing major. Then in the early part of Feb., I got the saddle nose. That was when WG was mentioned. I had nasal/sinus surgery. It is amazing to be able to breathe again.

The biopsy confirmed WG and the ENT recommended a great doctor. I have met with her once, and today I am going for a bone density test, and they will determine my course of treatment. She is leaning to Cytoxan, which has me nervous.

Right now, I am tired and only seem to have energy in spurts. Also, I have the nagging unprocudtive cough that is driving me nuts. I also have numbness and swelling in my feet. I am walking and doing easy strength training to keep my muscles active.

Thanks so much for being here. None of my friends and family really understands wat is going on, because they have never had any exposure to WG. You all are living it, and will be a great resource for me.:thumbsup:

[KathyB]

Hi Jul and welcome! I was diagnosed in early Sept, 2011 but my major symptoms started with kidney failure and progressed to bleeding lungs. I have limited upper respiratory involvement (ears popping & some sinus fluid issues). You will find lots of varying degrees, symptoms, and treatments. Realize this is a very individual disease! My docs started me on Cytoxin (many in this forum can speak to its use) for just a few days until a kidney biopsy confirmed WG. They switched me immediately off Cytoxin and onto to Rituxan (or Rituximab). It's a relatively new treatment, but highly effective and less "destructive" than Cytoxin. I know others with more knowledge and experience will welcome you and weigh in on this treatment! Just know we are all together in this! You will find great comfort and info on this website!

On a personal note ... Where do you live in SW Florida? My oldest son and his wife are in Tampa, one of my twin sons is in Orlando, best friend from college in St. Pete, and mom/dad/sister/brother live in Venice & Englewood. I lived in Bradenton, Sarasota & Cape Coral from 1983-1993 before moving to VA. Love the Gulf Coast! Again, welcome!

KB

[Sangye]

Hi Julie, glad you joined our group. How much experience does your doctor have treating Wegs? You need to get a Wegs specialist involved. This thread discusses ways to do that: http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

I'm also wondering if they've done a CT of your lungs since you've got a chronic cough. And if your lungs are clear (by CT), I don't see why they'd be starting you on ctx-- the strongest drug-- instead of a milder immunosuppressant. Also, are you on prednisone?

[annekat]

Welcome, Julie! (I have sister named Julie.) There are so many new people joining the forum, I can barely keep up. You have come to the right place, and we all want to hear any question or story you have to share along your WG journey. Many of us are doing well after being treated for some time. I agree with Sangye that a CT scan of your lungs, if you haven't had one, is a good idea, to see what lung involvement you have. I know the nagging cough well, dry and unproductive or looser and more productive. In my case and others, a lung xray wasn't enough, and it took a CT scan to show significant and serious lung involvement. I was put on Cytoxan because of the lung involvement. I make sure to drink lots of water every day to flush it out of the bladder. Stay in touch with the forum, it is the best place to get information, and there are some very smart and knowledgeable people here (I'm not one of them, Sangye is.)

Anne

[Louisexx]

Hi Julie welcome hope your ok,I'm in the same sort of boat as you just been diagnosed, just wanted to ask how did the sadel nose happen as I think it is happening to me, does it just collapse or do it gradually
As mine is going in in the middle and tingles and hurts thanks Louise xx

[HopeinTN]

annekat- I too am on Cytoxan and Pred with Bactrim every other day. I have lung involvement too. Are you also on Bactrim?

Thanks

[annekat]

annekat- I too am on Cytoxan and Pred with Bactrim every other day. I have lung involvement too. Are you also on Bactrim?

Thanks Yes, I am on the same drugs as you are, including the Bactrim 3x/wk. I have been on these drugs close to a year, which I know is considered a long time for the CTX. My lungs cleared up pretty fast on the CTX, but the sinus and ear stuff has dragged out longer, with improvement. My doc is tapering the CTX instead of moving me to a milder drug. I know this is not standard but I have read of some others on the forum whose docs have done this, and it seemed to be OK, so am going with it for now. My CTX is down to 75mg. a day and my pred is at 10mg. I've just recently had a little more problem with coughing and breathing difficulty, and will be seeing the doc this week to discuss it. I'm wondering if it could be related to seasonal allergies, which I have a history of. In the past, my doc has discounted the possibility of allergy symptoms since I was on strong immunosuppressants, but now that I'm on smaller doses, I wonder about that. I'll see him on Wednesday.

Anne

[HopeinTN]

Good to know. They were thinking I'd be on Cytoxan at least 1 year. I'm not sure my lungs are clearing up but will know for sure on the 27th. I still have sharp pains in both lungs, just as I had before the lobectomy. Thanks!

[annekat]

Good to know. They were thinking I'd be on Cytoxan at least 1 year. I'm not sure my lungs are clearing up but will know for sure on the 27th. I still have sharp pains in both lungs, just as I had before the lobectomy. Thanks! You're welcome. Sounds like if you had a lobectomy, your lungs may have been a bit worse than mine. I don't remember for sure how long it took for the lungs to really clear up, may have been several months, but I do know the progress was steady while on CTX and high dose pred. I hope yours are on their way to clearing!

Anne

[HopeinTN]

The 27th will be 6 months of treatment. Thanks again.

[Dryhill]

Julie, welcome to the forum this is the best place to ask questions, moan about things and just "chat" to people who are going through the same problems as you.

Jim

[mishb]

Hi Julie and welcome to this forum, even though I am truly sorry you have WG and had to look it up......but then again, glad you found us

As everyone has mentioned, there are some very knowledgeable and some wonderfully inspirational people on this site.

An easy way for my family to understand some of what is going on, was to also have them read posts on this site. Some are pretty scary for them to comprehend, but others actually help a lot.
Maybe you should have one or two of your family members, or friends, take a look in here from time to time.

I wish you all the best in your treatment and hope that you can get off the rollercoaster in record time.

[RCOSSIO]

Welcome to our group and fellow geography weggie.

[renidrag]

Welcome Julie, a lousy disease, but this is the place to be. Sangye has suggested a WG specialist is the best way to go. I agree even though it took some time I was able to and have never regretted it. Just so you know I am in drug free remission and still adapting to my new normal. I was taken by the possibility of you being on Cytoxin for a year. This is twice the recommended time frame from what I know. I was on for nine months before stopping and they did not like that either. I was allergic to Imuran. Any way, I also noticed HopeTN was on for a long time, the good advice is to drink water, a lot of water. Sip- Here is to your recovery.
Dale

[HopeinTN]

Yep, so far it's 6 months on the Cytoxan and all labs look good and I'm tollerating it. They predicted 1 year and I'll know for sure what the next step is at the end of the month. I think there are a couple others on here that either have been on it for a year or plan on a year. I think most cases are when lung involvement is the culprit. In my case is was bad and resulted in a lobectomy in the middle right lung and wedge biopsy in the upper right. They left the left lung alone. My best advice, from a newbie, and from what I've heard and read, drink a lot of water. I'm taking it orally so that we don't case any harm to my kidneys, but with this is a chance to really mess up your bladder. Hence the large consumption of water.

Good luck and this site will make it much easier to live and stay positive with this rare gift of Wegner's/GPA.

[Julbkwrm]

Thank you all for the support and information. It has been great. i guess i am in a slightly different boat than some of you. My WG is all confined to my sinuses. It has not spread to my kidneys or lungs. As far as the Cyto, it has not been perscribed yet, and if I go on it, it will not be for a year. My biggest concern with it is the side effects of hair loss and being really tired. I am a university admissions counselor, and do a lot of travelling and presentations, so it is hard to have an "off" day.

I am so glad i found this site. You have all given great advice and information. I go to the ENT, Rheumatologist, and my General Practioner on Monday, and I think that will give me a much clearer outlook and plan.

[HopeinTN]

It may sound korny but attitude is everything and I think it helped me a ton. I was so scared about the hair loss and the energy levels. I may be in the minority, but hair loss was contained to a thinning (but I do have very thick hair) and the energy level is not too noticable. I had more issues with the Pred than the Cytoxan. I didn't keep me from work but haven't been able to play a full round of golf yet.

Keep a good and positive attitude, and it does make a difference. Good luck!

[Sangye]

I'm just going to interject that attitude is definitely important but by no means is everything. When I was first dx'ed I had a great attitude and believed with all my heart that I'd be back to work within 6 weeks! I even wrote my patients a letter explaining that I'd only be away 6 weeks. I had been so strong before and thought "Wegener's shmegener's, I'm gonna get this sucker under control." I believed I'd do a year of treatment and the Wegs would be completely in remission. When doctors suggested I might not be strong enough to work for that first year I actually said, "No way. Not me. You have no idea who you're talking to. My body heals fast. You just wait and see." But right after dx I got tons of blood clots and an endless string of serious complications and severe flares lasting for the next 5 years. It's now nearly 6 years since I've been able to work.

I only say this because too often people think if you're sick or you're not recovering well it's because you have a bad attitude. I've actually been told that from people before--that there must have been something deficient in my thinking or this couldn't possibly have happened. My advice is to have a good attitude and remain hopeful, but not to beat yourself up if things don't go as you planned despite your good attitude. If a good attitude was enough to stay healthy, Gilda Radner would still be here with us. :smile1:

[annekat]

If a good attitude was enough to stay healthy, Gilda Radner would still be here with us. :smile1: Amen to that. I just recently finally got around to reading her book, It's Always Something. I enjoyed it thoroughly, with all its ups and downs and ever-present humor. Anyone out there who hasn't read it, I highly recommend it. She passed away of cancer not long after completing it. Very sad. But still, follow her example and keep those attitudes up whenever possible! It just may help, it can't hurt, and you'll have more fun.

Anne

[annekat]

Thank you all for the support and information. It has been great. i guess i am in a slightly different boat than some of you. My WG is all confined to my sinuses. It has not spread to my kidneys or lungs. As far as the Cyto, it has not been perscribed yet, and if I go on it, it will not be for a year. My biggest concern with it is the side effects of hair loss and being really tired. I am a university admissions counselor, and do a lot of travelling and presentations, so it is hard to have an "off" day.

I am so glad i found this site. You have all given great advice and information. I go to the ENT, Rheumatologist, and my General Practioner on Monday, and I think that will give me a much clearer outlook and plan.

Julie, if you do get prescribed CTX, some hair loss may occur, but it is nothing like what happens to a cancer patient in chemo, who generally loses it all. My thinning is very noticeable to me but not so much to others, though it helps that I've got thick curly/frizzy hair to begin with, which helps fill it out visually. Various kinds of headbands and scarves can do a lot to disquise it and can make fashion statements as well as keeping the ears warm. As for the tiredness, that improved after a couple of months, to where it seemed to be from the Wegs itself more than from the drug. The pred will probably help counteract that, too. Since you have only sinus involvement, even if the symptoms drag on for awhile, they are likely to improve dramatically, as mine have. It is early in the game for you and very possible that you will do well with proper treatment! I do sympathize about your job and hope that the "off" days will be manageable! I know there are people on here who continue to work at their jobs with Wegs.

Anne

[delorisdoe]

I'm just going to interject that attitude is definitely important but by no means is everything. When I was first dx'ed I had a great attitude and believed with all my heart that I'd be back to work within 6 weeks! I even wrote my patients a letter explaining that I'd only be away 6 weeks. I had been so strong before and thought "Wegener's shmegener's, I'm gonna get this sucker under control." I believed I'd do a year of treatment and the Wegs would be completely in remission. When doctors suggested I might not be strong enough to work for that first year I actually said, "No way. Not me. You have no idea who you're talking to. My body heals fast. You just wait and see." But right after dx I got tons of blood clots and an endless string of serious complications and severe flares lasting for the next 5 years. It's now nearly 6 years since I've been able to work.

I only say this because too often people think if you're sick or you're not recovering well it's because you have a bad attitude. I've actually been told that from people before--that there must have been something deficient in my thinking or this couldn't possibly have happened. My advice is to have a good attitude and remain hopeful, but not to beat yourself up if things don't go as you planned despite your good attitude. If a good attitude was enough to stay healthy, Gilda Radner would still be here with us. :smile1:


Sangye, I think the problem is your wegeners did not read the book. The how to guide for wegeners. If it had then all of your 6 month plans would have worked out. You need to have a stern talking to your body and let the wegeners know that you are dissapointed in its defiance.

[drz]

I'm just going to interject that attitude is definitely important but by no means is everything. :smile1:

I think it is amazing how much the mind can do but there are limits. When I was first diagnosed I conned myself and body into believing I had a miraculous remission in a couple weeks. They were making plans to send me to the rehab hospital as everything was looking so good. Then Wegener said not so fast--hah-hah-hah. I got you. And the bottom fell out and things got real tough and real bad quickly as I outlined in an earlier post. I think your attitude is most important in how WELL you cope, not how WELL you get.

[vdub]

I don't know if this well help, Julie, but I have a cough as well and I'm in remission. My cough is somewhat a clearing of throat. My sinuses have pretty much drained into my throat ever since I had my surgery on them. That having been said, the surgery was the best thing I could have done. I am thankful everyday that I had it.

Go with the flow and just smile when someone says "gee, you don't look sick". I think I'll put that on my tombstone ("I told you I was sick").

[Sangye]

Amen to that. I just recently finally got around to reading her book, It's Always Something. I enjoyed it thoroughly, with all its ups and downs and ever-present humor. Anyone out there who hasn't read it, I highly recommend it. She passed away of cancer not long after completing it. Very sad. But still, follow her example and keep those attitudes up whenever possible! It just may help, it can't hurt, and you'll have more fun.

Anne
Definitely. :smile1:

[Sangye]

Sangye, I think the problem is your wegeners did not read the book. The how to guide for wegeners. If it had then all of your 6 month plans would have worked out. You need to have a stern talking to your body and let the wegeners know that you are dissapointed in its defiance.

LOL believe me, I have had more than one stern lecture with this dog. Sometimes out loud, in public.

[Sangye]

I think it is amazing how much the mind can do but there are limits. When I was first diagnosed I conned myself and body into believing I had a miraculous remission in a couple weeks. They were making plans to send me to the rehab hospital as everything was looking so good. Then Wegener said not so fast--hah-hah-hah. I got you. And the bottom fell out and things got real tough and real bad quickly as I outlined in an earlier post. I think your attitude is most important in how WELL you cope, not how WELL you get.
Wow, that was so well put! Very quotable, drz.

[Julbkwrm]

I That having been said, the surgery was the best thing I could have done. I am thankful everyday that I had it.


My sinus surgey has been wonderful too. I feel so much better. I only had it a month ago, so I am still healing and there is still a lot of swelling and crusting. I will just be thankful when I get my sense of smell back. I keep burning things in the oven. I finally had to invest in a timer to carry around with me.

[Natalie]

Hi Julie Welcome to the Forum . plenty of helpful people here and posts .All the best with what ever the coarse of action is , Nat