Hot off the press... Newly Diagnosed with Wegner's

[HopeinTN]

So, I'm very scared and so excited that I have a group to share with. I'm so not good at letting others help me or do anything for me. This is going to be so hard.

It all started in May with severe chest pain and breathing issues that sent me to the ER (for days my friends had me convinced it was gas- oh how I wish it were). A CT scan showed spots on my smoke free for life lungs that caused great concerned as I have family history of cancer and skin cancer myself (DFSP) that can come back in other places. After 5 days in hospital to rule out everything they could, my pulmonologist referred me to a Thoracic surgeon. Due to the location of the nodules, a bronchial scope wouldn't work so we scheduled an open lung biopsy.

The surgery went fine but turned into a middle lung lobectomy. At first they were sure it was TB and quickly ruled that out as well as cancer. The biopsy said it had all the signs of Wegner's and all bacteria and fungal infections were ruled out. But the infectious disease dr. said she was sure it was a MAC infection and with a couple positive test showing Wegner's, the rhuematologists said "you just aren't sick enough for it to be Wegner's". THANK GOODNESS I GOT A 2ND OPINION FROM VANDERBILT!

I had an amazing ID dr. at Vandy that referred me to a rheumatologist at Vandy that diagnosed me last week and here I am. It's only in my lungs for now and for that I'm grateful.

I start cytoxan, prednisone and bactrum tomorrow. Originally, the cytoxan was to be via IV once a month for three months but we decided on a pill once a day for three months. Curious about side effects, tips...

Again, I'm so thankful for a place to chat, learn and help. THANKS!

[vdub]

I think one of the things that a lot of us hear often is "gee, you don't look sick".

Wegs is a very frustrating disease and I'm really sorry to hear that you have it. Our little forum is an excellent source of info as someone on the forum has been through whatever they are scheduling you for. And, like you said, we are here to chat....

[renidrag]

Welcome and sorry you have to be here, others will come along with a lot more words of wisdom than I. If you think about it can you recall your symptoms for a time before you were diagnosed? I too only have lung involvement and consider myself very lucky and was on the same regimen of drugs as you are. Worked for me. Try not to eat tooooooooooooo much!! Prednisone gives us the hungry horrors.
Dale

[mishb]

Hi HopeinTN.....welcome

I also was extremely thankful to find this site.
As newly diagnosed, remember to ask a lot of questions and read a lot of posts.........no question will be too small or seem too silly

I'm glad you found a great doctor

And as always.....

[mama2005]

Welcome glad you found the site. I have found this site to be very helpful and supportive.

[RudiK]

Hello HopeinTn and welcome to this site. I'm not good either at expressing myself, so I don't post often. But, I check and read all the postings every day, they were extremely helpful when I was first diagnosed and helped me with coping with this disease. And, as Michelle said, keep smiling.
Rudi K.

[Rose]

Hi and welcome. One of the most important things to know is oi drink lots and lots of water when on cytoxin to keep the bladder flushed. You do not want those harsh chemicals sitting there so empty your bladder as often as possible. I wish I had been warned about the appetite increase whilst on pred. Mind you food never tasted so great!! The weight goes on very easily but it is almost impossible to lose. You have been warned. LOL

[Chris G]

Welcome to the group! I'm glad that you were diagnosed relatively quickly. It could have spread beyond the lungs and/or done much more damage there, had it gone on for much longer. I've never taken ctx, so I can't offer any assistance there. But many people here will be able to help you with that. And there are many great ears here to listen to any concerns you have!

[HopeinTN]

Thanks so much for the feedback and warm welcome. My two siblings both have Chron's and this was my disease. I still feel lucky! They both have warmed me and guided me on the Prednisone Pounds and things to look for. I drink tons of water now, so I don't think will be an issue.

For those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

Thanks All!

[Rose]

http://www.hopkinsvasculitis.org/vasculitis-treatments/cyclophosphamide-cytoxan/

Think this explains "real truth about the side effects" Hope it helps!

[HopeinTN]

Thanks Rose. I appreciate the info. Don't sound like a few months at a spa, but at least I'm informed.

[delorisdoe]

Thanks so much for the feedback and warm welcome. My two siblings both have Chron's and this was my disease. I still feel lucky! They both have warmed me and guided me on the Prednisone Pounds and things to look for. I drink tons of water now, so I don't think will be an issue.

For those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

Thanks All!

I was on it for more than two years.

It made my hair thin-not fall out. My pony tail went from being as thick as a cucumber to as thin as my thumb.

It did not make me nauseous.

It did make my white blood cell count get so low that I had to have ivig treatments to bring it back up however this hapened only after being on it for 2 years so it should not be a problem for you if you do tolerate it well.

It made me tired but when I was on enough prednisone the prednisone woke me right up so that was only an issue when I began to taper the prednisone.

[RudiK]

Hello HopeinTn, I was treated with 100mg CTX, 50mg in the morning and 50 mg in the evening. I was told by my doctors that the two greatest treads/side effects were the danger of cancer of the bladder and a vastly reduced immune system. To lessen these two treads I was instructed by my doctors to stay away from large crowds, especially in confined areas, and to drink at least one gallon of water a day (at least one 16 oz bottle with each pill) to prevent a build-up toxic stuff in my bladder. I was on CTX for 5 1/2 months, I'm now on Azathioprine, the generic version of Imuran.
Rudi K.

[elephant]

Welcome to this wonderful site! We have some really knowledgeable and helpful people here who care and will help you the best they can!

[drz]

Thanks so much for the feedback and warm welcome. My two siblings both have Chron's and this was my disease. I still feel lucky! They both have warmed me and guided me on the Prednisone Pounds and things to look for. I drink tons of water now, so I don't think will be an issue.

For those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.

Thanks All!

It varies a great deal. Some lucky people seem to have no problems with it and great results. Some of us can't seem to tolerate it. I had frequent drops in WBC and had to cut dosage or stop it altogether till WBC recovered. I also had numerous bladder infections that were often very painful. It can really irritate the bladder and in some cases really scar it so looks like hamburger inside but most people who drink lots of fluids (water) and urinate often have no problems apart from reducing those nasty antibodies that are trying hard to kill you. The lower immunity does increase your risk of infections so be careful.

[Sangye]

Hi HopeinTN, welcome to the group! I'm glad you got a second opinion, too. Most important things to do when on ctx are drink a lot of water-- about 1.5 liters is good-- and pee every time you have a sensation of urine in your bladder. Don't wait for a full bladder. You have to keep the ctx diluted with all the water and keep it from sitting in the bladder.

Also, you can take ctx with food, and you can split up the dose all day. I couldn't tolerate the 150mg all at once without severe stomach pain. I had to take it 50mg 3 times a day, each time with a meal.

[aewaustin]

Also if you have a hard time taking CTX you can take pepsid with the dose. The first day I took it this go round I had a burning nasty feeling in my stomach and then remembered that pepsid helped the first time and once I took that I was fine. Pepsid is over the counter but I got my doc to give me a prescription for it so that it was less expensive.

[Al]

TFor those of you that have had Cytoxan, can you give me the real truth about the side effects? I'm a real tough cookie and want to know what I'm dealing with.


I had pulsed CTX, not the daily oral stuff. But, by way of comparing side effects, I can say that my taste buds got damaged--perhaps permanently. On the other hand, I actually lost weight on prednisone, even with a terrifically increased appetite. (I know this is rare--the weight loss, I mean, not the appetite.)

Good luck, keep those cookies tough, and stay fighting!

Al

[Victoria]

Hello Hopein TN. Let me know if you got reply in private message.