Wife just diagnosed with Wegeners

[JeffS77]

Hello,

i would like to start by saying I am very glad to have found this forum. just from searching here i have found answers to many questions already.

So long story kind of short. My wife is 27 years old and a healthy person before she started getting sick in September she was running 5k's and training for even longer races. she is a active person that would go running almost everyday of the week. In September right before her first big 10k trail run she got sick with what we thought was just a cold. needless to say it never really got better and after multiple trips to the doctor they said it was bronchitis and that it may last a few weeks and sent her home with some otc meds. by November she developed a heavy dry cough and went back to doctor that took a chest Xray and said she had pneumonia based on a small cloudy spot they saw and sent her home with some antibiotics and if it didnt clear up by the end of the meds get another chest X ray..well she started to feel a little better but still had her cough and went in for another chest Xray around this time she noticed spots of blood that she was coughing up and had one major bloody nose but also noticed blood in her snot.

so that leads us up to about last week. when she called her doctor to schedule a fallow up on her last chest X ray. the doctor saw a Cavity in her lung and had her admitted right away. so after 4 days in the hospital and many blood test, a C scan that showed 3 cavities and a lung biopsy they have concluded she has Wegeners do to the ANCA in her blood test and from what the docot said was granulosus in her biopsy. but the biopsy was sent to what they called a specialist arizona to review. this where i still hold out a little hope it may be because of possible fungil reading as he said they are waiting on some stains to come back. but all her other fungal test where negative.

the pulminary doctor and rheumotlogist (both who have dealt with wegeners) decided it would be best for her to start prednisone. 60mg daily and hold off on Cytoxan untill they get the biopsy results back and are 100% sure..right now they say they its 99.9% sure she has wegeners.

so that leads me to a few questions.

she started 60mg pred thursday and i was wondering how long it will most likely take untill she starts feeling some what normal ?? the doctor said the pred would help her get her energy back??

we see the fertility doctor on monday about the possibility of harvesting eggs..this may delay the treatment of cytoxan. her health is the #1 priority and if the disease is gonna advance anymore we may just start the cytoxan and heavy doses of birth control to possibly help protect her so if and when she goes into remission we may still be able to have kids..but at the same time we are undecided even if she went into remission if we would want to have kids because of possible birth defects/complications and the high risk pregnancy.
this is the tuffist part of it all as we where preparing to hopefully get pregnant in the new year.

what are your opinions about pregnancy post diagnosis ?? what are the odds of being able to get pregnant and have a healthy child?? (harvest eggs/naturally??)

i am not sure what the dosage will be for cytoxan but we see the rheumy monday after noon as well an i will ask. but it will be a pill dosage at home and no IV and the taper down to the metha what ever its called.

will she lose hair?? will it wipe her out?? should we plan on her taking off work and beign on disability?

our hopes are she is a healthy young woman and the disease seems isolated that we can get on it soon and hopefully get it in remission


sorry for the long winded post..i thought i could keep it shorter.


Thanks
Jeff

[drz]

I believe Rituxan can be used as alternative to Cytoxan where there are concerns about fertility issues. Ask your doctors about this option. It didn't work for me so I ended up on Cytoxan but it does work for most people. The side effects of drugs vary greatly according each person so no one can predict or even try predict what might happen to your wife. Most of us all improve with treatment but many posts here will also suggest you may not get back 100% to the state of health you had before you got sick. Many people can continue to work, perhaps most people, but many of us here are the ones with more severe cases and are too disabled to work. I think the ones who can work and lead normal lives don't spend much time on these sites since they are too busy with their life since they are doing very well managing their Wegener's and are not looking for more info to improve their health. You may know about one of the posters who climbs mountains (Everest) and has an inspiring story so yes your wife may become very active again after successful treatment. Maybe even take up mountain climbing (smile)

Welcome to the forum and keep asking questions.

[JeffS77]

yes Rituxan does sound promising i have been reading about it her and it is one of the first things i am going to ask about on monday.

[Sangye]

Hi Jeff, welcome to the group. It's always so sad to read about young people being diagnosed, especially someone who was just planning to have kids. The fertility specialist will have all the info you need about what to do. There are several members in this group who had ctx (cytoxan) and went on to have one or more kids. However, the risk of infertility is quite high.

Here is info for you: http://www.wegeners-granulomatosis.c...need-know.html

The #1 most important thing is to get connected with a Wegs specialist asap. The link above gives you the pros and cons of the various ways to do that.

As far as when she will feel better or normal and whether she'll be able to work, etc... it's highly variable and there really is no way to predict it. Some people feel better soon after starting the meds and others feel worse. It seems to have little to do with how one normally responds to illness. I always bounced back quickly from any illnesses, but not with Wegs. The best way to optimize her response is to be treated by a Wegs specialist right from the start.

[Jack]

Hi and glad you found us even though it is a shame that you had to.

It sounds as if your wife has been lucky enough to be caught in the very early stages of the disease (if they have discovered granulomas in the biopsy, that pretty well confirms the diagnosis) so hopefully not too much damage will have occurred. The Pred should act quite fast in making her feel better, perhaps as soon as a day or two, but be aware that it can cause mood swings at a time that is already difficult to handle. I'm sure you'll be supportive!

I'm afraid that I can't give you any information about pregnancy and neither can I say what the future may bring. Wegener's is the master of unpredictable change. However, if she reacts well to the treatment and is in the hands of a vasculitis specialist there is no reason to think that she won't be able to work again.

[JanW]

Hi, and I am glad you found us.

You will get good advice here. As everyone before has said, response the WG is highly variable. I was able to continue my life as before, despite having to have surgery on my windpipe and having a pretty prominent couple of deformities (a limp and the bridge of my nose collapsed) because of it. I work, run after my kids, attend social events, etc. I have responded well to treatment and surgery, and honestly feel better than before I was being treated.

The important thing to know is that you can get through WG with proper care. We've all been there and felt that bolt out of the blue, when someone diagnoses you with a disease you have never heard us. Please come back and ask questions often.

[elephant]

Your wife was blessed to be diagnosed pretty quickly, and I agree with everyone's post. Getting her to see a Wegeners specialist ( Rheumatologist) will bring a better outcome. I personally think she will bounce back soon. I too had a chunk taken out of my lung and it takes a while to get over that surgery, then on top of that she needs to rest. We are here to answer any questions that you may have.

[Joy]

Jeff-hello! Your post duplicates our recent experience w/ our daughter who is 26. There are so many similiarities. My heart breaks for y'all as I remember that 1st week after diagnosis. I hope you will read my new post " daughter recently diag" & also Mels post on new members intro. You are already getting some very helpful advice from the great people here. We have learned alot, I know how overwhelmed you feel & want to make the best choices . I read everything I can on this site & try to use it to learn & be able to ask questions of the drs. It has been a great help. Our search for fertility info is still ongoing ,there are so few women their age w/WG . We plan to ask lots of questions of the Wg Specialis t @ Duke on Tues. As I mentioned in my new member intro our daughter is active again. She felt better 2 days after the pred was started, she did use oxygen when neded for abt. 3 wks after her biopsy. At this time she still gets winded on stairs but is doing so much better. Hopefully her protocol will be determined Tues & she will b/g treatment immediately. I will be very interested in hearing what the fertility Dr. says on Mon. ~ Joy

[JeffS77]

Thanks for the reply Joy.. it is nice to know there are other women in the same place in life dealing with the disease like my wife....i have been up reading and reading everything i can find and only have more questions.. RTX is an option i want to discuss with the rheumatologist and well as maybe starting on MTX instead of CTX or RTX..seeing as how it seems to be very localized in her one lung with only 3 cavities with the biggest being about 1" maybe this will be a possibility ??? i will post more as we learn more Monday .

but i would like to add that i think the pred. finally kicked in i can say that she was doing much better today with a lot more energy, less coughing less runny nose and just overall feeling good. and i swear i could see her get the color back in her face. today was a good day.

[Joy]

Jeff, there will be more good days. I know exactly what you mean when you said you could see her color come back. It's amazing...