Newly Diagnosed

[GeorgiaInOhio]

Hello Everyone! Im new to the board. I was just Diagnosed with WG 2 weeks ago. I spent 10 days in the Hospital after having a year long sinus infection, and then suddenly out of nowhere my feet began to swell and hurt so bad I couldnt walk or even function. I developed the vasiculitus all over my calves and feet and finally was admitted to the hospital. I went in for foot pain, ended up with a lung biopsy, and here I am today, taking 80mg of prednisone, among others, still trying to absorb all the side effects. Im still having alot of pain and swelling in my ankles and feet, and the red spots just keep coming. Its been crazy and I dont really know what to do with myself. I have a 6 year old son and his father and I are really trying to get our lives back together after dealing with this out of no where. Im hoping the board will bring me hope. Ive never had to deal with anything like this before, never had a health problem... its all so life altering I dont even know where to begin... so I guess Ill just start with this, and a big HELLO!!!

Thanks!
Georgia

[andrew]

A big

HELLO

to you too!!

Welcome to the group. Are you on anything other than the Pred? Cytoxan perhaps? You're right though, the WG is certainly life-altering. I can't even remember not having it. Thing is that you need to remember that you're going to have to adapt to a 'new normal'. That can be different for everyone but usually it involves taking things really easy at leat for the intial stages when your meds are being assessed and you're dealing with side effects etc. Hard to do with a kid I know but it's a necessity.

Best thing you can do here first is read the stories from other members. They can give you a lot of tips and background. Feel free to ask absolutely any questions you like or just log in to have a rant if you want

I'm going to pre-emt what Sangye is going to ask: have you got an experienced WG doc? If not, get one. It's vital to your ongoing feelgoodedness <- there you are folks, I just invented a word!

If your symptoms go on then your meds are probably going to need reviewing. This will probably be done anyway at your next doc visit anyway. One other thing...keep a symptom diary. If you experience any weird issues or ongoing ones such as the pain and the red spots (I have them too), write it all down. Also write down any questions that pop into your head. Take this diary to the docs when you have your appointment. I find that my mind goes blank when I walk into my docs office. He asks me how I am and I say 'fine thanks' because I can't remember the odd issues that I had in the previous couple of months since I saw him.

Again, welcome and like I said, ask anything you like.

[Jack]

Hi Georgia,

Welcome to an exclusive little group!

If you are still experiencing bad symptoms, your docs may not be hitting the disease hard enough. As Andrew mentioned, it takes a good, experienced Specialist and something more than Prednisolone to tackle this in the early days. Some docs hesitate to do this because the drugs required are so toxic, but it is necessary.

I think it took me several years to fully come to terms with my new condition and about the same to get it under control and in remission. It was a difficult time with huge lifestyle changes and mourning for my former self. However, I went on to adapt to my New Normal, had a good career and raised a family.

There is life after Wegener's! (but it might take a while to get there )

It is early days for you and you have a lot to learn about your disease. Read a few of the stories on this Forum (they are all very different!) and then ask any questions you like, or even just have a moan! We all know how it feels.

[crackers]

hello georgia.there's no point repeating what andrew and jack said so i'll just welcome you to our happy family.
john.

[Sangye]

Hi Georgia,
Welcome to the group! I'm glad you found us but sorry you needed to, you know?

Andrew totally pre-empted me! It's true--the first thing I ask is if someone has a Wegs specialist. Please tell me you're going to Cleveland Clinic, or at least that their Wegs specialists are collaborating with your local docs. You're blessed to be so close to one of the world's few Vasculitis Centers. If you're not going there and you need help figuring out how, just ask. Ask anything!

[Doug]

Georgia- Hello from Nebraska! Everyone up to this point has had just the right thing to tell you. I especially liked Andrew's "feelgoodedness". Australians are a clever lot, having invented "weggie" as well. You will feel lots of emotion and stress on 80mg of Prednisone a day. I kept a notebook I called my "Krazy Book" because of all the outrageous and - now - shockingly bizarre things I thought under it's influence. At one point, nurses warned me to cool it (i.e. what I said to the doctors) because the doctors were considering putting me in the psychiatric ward! I've attached links to some videos I loaded onto YouTube about my experience with the drug.

http://www.youtube.com/watch?v=JYAFOdHmO5M

http://www.youtube.com/watch?v=900svGOMdMs

http://www.youtube.com/watch?v=qAe1kPwosr4

This next one is about the changes long-term, low dosages of Prednisone bring about. It is a bit less up beat that we try to be on this forum, but the fellow concerned brings out quite a bit of information on the side effects of Prednisone. There are a few dirty words, but the worst dirty word, as we know, is Prednisone. Can't live with it, can't live without it. Hope these are of help to you, Georgia, and other new members of the forum who missed them when I first posted them.

http://www.youtube.com/watch?v=fxq00c3k1pY

[Lady March]

Hi Georgia

Sorry you had to seek this site out as I and others have but one thing for sure I'm glad there is a place we can all go to for some additional info and comfort.

It is very hard caring for other family members when you yourself are ill. I am my husbands primary care giver for the past 3 years and at times it is very difficult trying to put him first and then take care of myself.

Hate the prednisone. But it is necessary. It has made me a starving hungry b...h. As soon as I finish eating the last bite of something I wonder "what can I eat now".

Try and take one day at a time and manage that one day as best you can.

[Doug]

Lady March- I was the primary caregiver for both my elderly parents for several years. My father, now deceased went into a care center about half a year after I ended hospitalization for WG. Those were difficult months because I was not able to get around much myself. That contributed quite a bit to him having to go into the care center: I was unable to lift him up if he fell, and he fell often enough it was a concern.

Then my mother and I moved into an apartment associated with the people who run the care center, a senior housing project apartment, I guess you might call it, a duplex that is rather pleasant and only half a block from the care center.

In time, the needs of my mother grew greater than my ability to provide. My health took a turn south, I had a case of shingles my GP characterized as the worst case he'd every seen (in over 30 years of practice!): when you have WG, everything that happens to you has to be viewed in that context- I allowed myself to put my mother's needs over mine, and it made me vulnerable, as a weggie, to a herpes zoster outbreak! My family did an intervention after the second or third time I was hospitalized within a month, and had her moved to the care center, where she thrived as she couldn't under my care. P

POINT: you can't be Super Mom or Super Wife any more, unless you want to drag yourself down into more hospitalizations and set backs. Once you start to feel better- and you seem to be on the road to that happy day!- you will be tempted to over do it. Listen to your body at all times. Be honest with your family about how you are doing, and try to get them more involved activities that help the whole family thrive together (i.e. helping you when you need it!).

I don't want to seem gruff with you. I hope I can help you prepare yourself mentally for the time that you try to over-extend yourself and find yourself back in bed for your effort. It will be hard on your family, so, if it helps, vent on this forum when you feel those stresses and need to kill some small, harmless animal or yell at someone. It happens! Even to the nicest people.

[Lady March]

POINT: you can't be Super Mom or Super Wife any more, unless you want to drag yourself down into more hospitalizations and set backs. Once you start to feel better- and you seem to be on the road to that happy day!- you will be tempted to over do it. Listen to your body at all times. Be honest with your family about how you are doing, and try to get them more involved activities that help the whole family thrive together (i.e. helping you when you need it!).

Thanks Doug I appreciate your concern and advice. It is always difficult to care for family members even if you are well and I know what you went through.

I do have a wonderful grown son and daughter-in-law who live only 2 miles away and they keep me in check. It seems my son has become my mother constantly monitoring me. They have been wonderful since my husband became ill and now with me even more.

Believe me as much as it bothers me to do it, there are times I have to not jump when my husband needs something and get to it later. I do rest often during the day and so far things have worked out with his care. Thanks again

By the way, I had shingles 10 years ago. What a treat!

[Sangye]

Lady March, you sure have your plate full. I'm glad you have your son and daughter-in-law to help you. What is your husband sick with? Feel free not to answer that question! We all get to know each other so well in this group.

Georgia, I meant to tell you I have ankle swelling with Wegs, too. It was one of my early signs that something was wrong. (I had a ton of blood clots from Wegs also, so the swelling is a big problem for me.) Hopefully as your treatment works, the swelling will improve. The only good thing about it is that it tells you when you're overdoing it. Pred gives you a false sense of strength and masks the underlying weakness, so you can overdo it and not know until you're totally crashing.