Just Diagnosed

[Happy Camper]

Hello everyone. On June 22nd I was diagnosed with Wegener's. In March I noticed that I had a left plueral rub (I'm a nurse). I had one of the doctors at work take a listen, he thought that was strange and ordered a chest xray. It was normal. At the time I had a tooth that needed a root canal/then abssessed and was dealing with that. I was having low grade fevers, but figured it was from the tooth. After trying antiinflammotories and not getting better I had a CT scan and they found a very small (pea size nodule). I seen a specialist and they put me on more meds/ without improvement. They did a repeat CT scan and the nodule grew to 2cm plus a few more smalls one. They then did a bronchscopy on me and a bunch of blood work, which came back that they though I had RA, with lung involvement.
At this time I noticed I was losing a little weight, tired and having joint pain. I'm always stiff in the morning ( have been for years) and also was told I have carpal tunnel so didn't think that much of it. I also lost my voice, but having years of chronic sinus problems didn't think much of that either. The bronchoscopy results came back with no answers and I went and seen a rhuemy-she insisted on an open lung biospy immediatly and another CTscan. i had the scan and the nodule grew to 6cm plus a bunch more and all kinds of inflammation etc..
I went in the next day and had the surgery which is what gave me the diagnosis of Wegener's. I felt like my life was sucked out of me when they told me the diagnosis. I couldn't even talk because I had only terrible things to say. It was definelty the worse feeling I could imagine. I am 29yrs old, married with 3 kids. They are 4, 3, 2 years old. All I could think about was them and how this would effect them. I immedialty researched the best hosptials and came up with Cleveland (being closest to me) as one of the best. I called that day and was able to get an appointment with Dr. Langford in 3 days. They started me on IV steroids and discharged me. I left for Cleveland the next morning. There Dr. Langford (who was wonderful) started me on Predinsione 6omg/and Cytoxan 100mg and all the other normal meds.
I seem to be tolerating the drugs well. I feel a little jumpy/can't sleep too good, and nervous. But I have alot of my energy back, no night sweats, fever or joint pain. My kidneys are good and I had a normal eye exam today. I'm trying to stay strong for my kids and family. I also started on an anti-inflammortory diet that I'm doing very well with. I don't want to gain any of that steroid weight LOL. I have a huge family/friend support system that I'm very grateful for, but thought it would be nice hearing from people that know what it feels like to have your whole world flipped upside down with one sentence-you have Wegener's.
I'm not able to work right now, esp. that I work in on a floor in a hosptial full of sick people and don't know if I'll ever be able to return to my job as a nurse??? They told me I need to get better control of my sinus problems-which will be difficult. Any suggestions??? My ANCA was also negative and my pathology report showed nectrozing and non-nectrozing granulomasis- thats why Dr. Langford said they had a very hard time giving me an official Wegener's diagnosis. Anyone else have a negative ANCA in the beginning or know about there pathology?
I have a strong family history of autoimmune disease so wasn't shoked that I got something, just didnt expcept this. My Dad had a liver transplant (from his autoimmune disease -PSC) 13 years ago and is probably the strongest person I know. He had defiently set an example for me to live by. He mountian climbs and never let anyone tell him he couldn't live the life he wanted. He is probably is better physical shape them most people 2o years younger then himself. He is helping me with this new diet.
I'm trying to look at all the positive in my life and not dwell on the Wegener's but it seems hard to find a balance. Everyone told me and my husband we were crazy that we choice to get married at 22 and then I had our 1st child at 24- I guess there was a reason behind that. I've read so many of your stories and information on here and I feel lucky that I think they caught it early and hopefully I can go into a full remission. What is the longest remission you have been in? I asked Dr. Langford if I could go into remission for say 20years and she said yes. Do people really do that? I'm scared when I get off the drugs it will all come back? I'm also trying to get used to drinking all this water to flush the cytoxan out of my bladder. Well thanks for listening to my story and I appreciate any information/advice for a Wegeners newbie.

[marta]

Hi Happy Camper,

I'm a newbie too, and yes this is quite the shocker. You're on the same 'cocktail' they put me on, and I've been dealing with it pretty good. Did you find it trippy at the beginning? I had these crazy trips, and the first few days I turned completely yellow each time I took my 'cocktail' - like yellow yellow, it was freaky. Then my trips went from being completely comatose, to these deep sleeps, then I started to get dreams, and then it was naps. All of that is done now, and the colour changes on my skin have stopped which is good as I was looking quite the monster after I took my drugs. People would see me on the street (I live in a small town) and say " Oh you look great" while I was these nutty shades of yellow or green or sometimes bluish grey, so now I know what they look like when they're fibbin' (well intentioned fibbin' but fibbin' nevertheless). My sweats are gone as well, and I have been generally speaking, feeling better each day - the sleep thing is still not within my grasp (she said as she clicked on the keyboard at 12:30am). I'm off work as well for the time being, and I too have that amazing motivator at home - the toddler.

I never planned on having kids, and then decided late in life to give it a go, and thank goodness I did because that is what is keeping me going, and going, and going... I told myself in the hospital that there is no way that my daughter is not going to remember her mom. From that moment on the strength to take anything on has embraced me and changed my perspective. I too have some autoimmune issues in my family, my dad has Lupus and my sister has arthritis, so who knows. I've been playing with eliminating salt from my diet, and that has seemed to work pretty good... other than the fact that I think about food all the time, so there are moments of succumbing to my weakened willpower, but baby steps forward...as for drinking all the water, I'm with you. I've never been a big water drinker, in fact I hardly drank any water (mostly coffee, I know that's bad, but that's how it was) and now I feel like I'm forcing all the water in all the time. My husband has become the 'water nag'.

So there, no information, no advice, just the ramblings of a mad woman on prednisone and cyclophosphamide having gone on a pretty similar trip to yours. Too bad it wasn't Hawaii or something cool like that.

[pberggren1]

Hey Happy Camper:

Could you tell me more about your chronic sinus problems? Do you have infections, damage, bleeding, crusting, large mucus production, post nasal drip, etc. ?

I would also like to know why Dr. Langford has a hard time giving you a definitive diagnosis of Wegs. Is it just becasue of negative ANCA?

[Jack]

I would not take too much notice of the ANCA result. For many it is a good indicator of disease activity, but for others the result seems to make no sense at all. The gold standard is the presence of granulomas in the biopsy.

The sinus problems should go away as the Wegs is brought under control. If you have nasal crusting and congestion perhaps nasal irrigation would help. A lot of people on get help from it.

There IS a life with Wegener's! In my own case I had a late diagnosis (25 years ago) and suffered a lot of permanent damage, but I eventually gained remission, held down a good job and raised a family. I see no reason why you should not return to work at some time.

Quite a few people on here say that they have auto immune diseases in their family, but I come from a family with a history of people living into their 90's so I'm not sure that heredity comes into it.

Don't eliminate all salt from your diet or you will start to get cramps. I did that!

[JanW]

Welcome, Happy Camper. I'm like Jack, no auto-immune diseases and people living into their 90s, so I don't know how I ended up here -- but I did!

Good luck. Everyone here is wonderfully supportive.

[Jack]

It all sounds a hell of a lot like Wegener's to me - I had all the same symptoms, was not treated and lost my kidneys. The docs seem to be obsessed with a diagnosis of infection even when it is plain to see that the patient is exhibiting multiple symptoms. Wegener's does not follow a rule book!

[elephant]

I also see Dr Langford and you are in good hands. YOu will get in full remission, I am a RN too and felt "stupid" like I should of been more on top of what was going on (basically should of put the piece's together re: WG." You are doing well for taking care of three young children and fighting this Ugly monster.

[Happy Camper]

Elephant- I know what u mean about feeling "stupid". I didn't even realize how sick I was until this past week because I feel so good again. It seemed to happen slowly and being with the kids just didn't realize it. My plueral rub was so loud- all the nurses on the floor would listen and we would almost laugh about it, like what the heck is going on. Crazy how fast everything can change. Is it normal to feel in denial? Sometimes I don't really believe I have this. But I do feel a strong sense that I will get into remission, my nodules showed some improvement after 6days of only steroids. Dr. Langford seemed very happy with that. My ESR, CRP are also back to normal, is that typical to return to normal so fast?

Jack thanks for all your information.

Oh what about Cytoxan and going pee, LOL, am I suppose to flush twice and be extra cautious using the same bathroom with the kids. One of my nurse friends told me that? anyone else have info on that?
Thanks

[marta]

Hey Happy Camper, I've been thinking about your story quite a bit today. Specifically how fast your nodules grew. I had no idea that they have that capacity. I've seen my x-rays from the day I got diagnosed and those taken from my follow up with the thoracic surgeon ( whcih was about a month after the first batch) and the difference was substantial. I was quite blown away at how much the nodules had gone down, but reading your story and how fast they grew.... phewffff.

Also I haven't heard anything about the cyclophosphamide and kids, but I'm looking forward to seeing if anyone has anything on that.

Jack, first of all, my husband thinks you rock (as do I). We love your pragmatic ways and words of wisdom. Second, good one on the salt. Thanks. I've been quite dilligent on trying to cut it out (and of course if you eat anything processed, you can't as they seem to stuff so much sodium into EVERYTHING, and sometimes I'm just too lazy to cook everything from scratch) but I had crazy cramps in my feet and hands the other day and that might be the explanation for it.

[Jack]

I have not heard anything specific about cyclo and kids other than the usual precautions with a toxic medicine. You do need to make sure that you drink plenty and got to the bathroom promptly because it does your bladder no good at all and can give you serious problems at a later date.

[Happy Camper]

Marta- I couldn't believe that the nodules grew that fast either-it was really scared. I started to almost panick in the end b/c I wanted them to decide which treatment and get me started before they got bigger and spread. The day I had surgery the plueral rub that I was feeling was all in my right lung for the first time- so I know that it was spreading over there too.
So I just googled the whole double flushing of the toliet and Cytoxan and it said that up to 25% of the drug and be execreted (without braking down or whatever) in the urine, and that it would be good to take precautions with your urine. So either double flush or I just put some wipes next to my toliet and I'll wipe down the seat a few times a day b/c my older two are potty trained and my youngest is always running for the toliet to touch it or try on sit on it or whatever.
Good info on the salt-thankfully I didn't eat much of it before so hopefully I don't have any problems with that.
I think thats the hardest part about cooking healthy-the time that it takes. I've been trying to do a bunch of the chopping at once. Like make a salad for 3 days. Or make all the stuff for the wraps for a few days. I also cooked up a bunch of chicken/made meals that will last for the week. Its just lots of work, but the prednisone has given me more energy so that helps.

[Jack]

The trouble with Prednisolone energy is that it is not real! I'm afraid that it just makes you feel good right at the time when your body needs rest in order to attempt to heal itself. You are really doing yourself no good at all by pushing, you have to be kinder to your body.

[Sangye]

Major Ditto to what Jack just said about pred and energy!!

I started a thread with an article about chemo precautions the other day. I don't remember what it's called. It was a news article that discussed how exposure to small amounts of chemo is causing cancer in health care workers. Happy Camper, I think you're wise to take bathroom precautions. Also, we should each wash our hands with soap and water after taking chemo.

And remember your pets-- they can be exposed to chemo traces quite easily.

[JanW]

I was actually interviewing an company that does water system engineering (I'm a journalist) and they said that chemotherapy type drugs pose one of the greatest threats to the water system - and not just from the fact that people actually flush pills down the toilet when they don't need them anymore, but in fact from the drugs being excreted in urine. The EPA will be coming up with all sorts of standards in the next few years about what level of toxic drugs are safe within our water systems.

That having been said, it's still more regulated than bottled water!

[Happy Camper]

Sangye- Didn't even think about washing my hands after taking pills-good idea. I know better too b/c when I handle it at work I wear gloves. Wow so much to think about.
Jack I have been drinking tons of water-I'm so full from it. I drink about 9 glasses of water a day, plus 2 glasses of green tea, and one glass of milk. I figure 12- 8oz. glasses is good I hope. Makes me nervous just thinking about the drugs sitting in my bladder doing god knows what to it.
As far as the pred/energy its good advice. That is my problem I have-when to rest. My kids show no mercy to Wegener's. They just think I'm the same mom I was last month-there so innocent and young, it's hard. I'm very lucky to have a big family and awesome husband so I just need to make time to rest so I can get better. I go down on my Pred. to 55mg next thurs.-so I'm excited about that.
JanW. thats intersting about the water-so u think its fine to drink the water from the refrigerator vs. bottled water

[Jack]

There has always been the potential for issues with bottled water because the standards applied are lower than for the regular house supply. See - NRDC: Bottled Water (http://www.nrdc.org/water/drinking/qbw.asp)

[JanW]

Yes, in the developed world water systems are very highly regulated. We used to only drink bottled but I got so tired of the waste -- and frankly the tap is absolutely fine.

[drz]

Major Ditto to what Jack just said about pred and energy!!

I started a thread with an article about chemo precautions the other day. I don't remember what it's called. It was a news article that discussed how exposure to small amounts of chemo is causing cancer in health care workers. Happy Camper, I think you're wise to take bathroom precautions. Also, we should each wash our hands with soap and water after taking chemo.

And remember your pets-- they can be exposed to chemo traces quite easily.

My nurse told me to be sure and flush toilet twice because of Cytoxan in urine and to wash hands carefully.

[Happy Camper]

I have been trying to force myself to slow down-from all your guys advice with the pred/energy. Esp. at night when the kids go to bed I'm trying to rest and relax, and slow down. Yesterday I had 12 kids here on a water slide. LOL kids show no mercy to the sick.

Ok what about Cytoxan-so far so good. I have been on it for 6 days. Felt a little nausead yesterday for an hour only. Is this going to get worse? What about hair loss, when does that usually happen, if it does?

[Jack]

I'm not sure that you can predict how you are going to react. I had no side effects that I could notice in spite of the huge doses I was given in the early days. Hair loss was within the normal expectations of male baldness in my family and no more than I had before treatment started.

[Sangye]

I have been trying to force myself to slow down-from all your guys advice with the pred/energy. Esp. at night when the kids go to bed I'm trying to rest and relax, and slow down. Yesterday I had 12 kids here on a water slide. LOL kids show no mercy to the sick.
You're doing great! At least you weren't on the water slide with them all day, right? At any rate, I bet 12 giggling kids was a good trade-off.


Ok what about Cytoxan-so far so good. I have been on it for 6 days. Felt a little nausead yesterday for an hour only. Is this going to get worse? What about hair loss, when does that usually happen, if it does? I was on 150mg/ day oral ctx twice. Both times I had to split it into 3 doses-- one with each meal-- to avoid terrible stomach pain. For this drug, it doesn't matter how you split the doses, you just have to get it all in during the day. The only reason for getting it all in earlier is that you'll be sure to drink enough water and have time to pee it all out before the middle of the night.

That wasn't an issue for me--either the pred kept me up or I was already going to the bathroom. I got all my doses in by 6pm each night and had finished my 1.5 liters of water by about 8 pm.

I had minor hair loss--that seems to be the most common. It started about 2-3 months into it. It grew back once I stopped but has a different curl. Since my hair is only 1/4 inch, that means it doesn't stick straight up anymore--starts to bend closer to the root. Curlier hair after chemo is quite common. But Jack is right-- everyone reacts so differently that there's no point in worrying about it.

[Happy Camper]

I have wavy curly hair. Maybe it will make it really cute curly hair. Maybe a plus out of this LOL!.