Intro

[Debbie C]

Hi Brian,glad you found our "sick family" and that you are now a member of. It sounds like wg has really done a number on you, but handling it on your own isn't good. As you admitted you are already depressed. We are all here to vent,cry,listen and help any way we can so please feel free to open up to us if you don't want to see a social worker.
I agree with what Bob said ,that it sounds like pred alone is not helping you and it also sounds like you do not have a very good wg dr. or he wound put you on something else. Have you ever had ant rtx infusions ? Also stress can make things alot worse and it sounds like you are under alot of it dealing with this by yourself. We don't know where you live but please look at the Vasculitis Foundation website and hopefully you can find a more experienced dr that will get the help you need. Also if I were you,you should look into getting disability that would take away alot of stress with having to go to work everyday.Good luck and keep us posted

[Jaha]

Welcome to the best group of Wegener's people ever. I'm glad you joined us and I wish you all the best. I was always a loner and now I come here to communicate and connect with great people whom have taught me so much about this nasty disease. I really hope you will enjoy the support that I have found on here. Take care and hope to hear from you soon.

[vdub]

I'm sorry you had to find our little group of people. I've been where you are; 3 times. Drug induced depression that took me to the ER and once to the psych ward. Those 3 times were the absolute worst I have ever felt. The anxiety was crushing. Actually, I can't even explain how bad it was, but it certainly gave me an empathy for people in that situation. The mental toll from the disease has been just as difficult as the physical toll for me.

My enodo kept messing with the hormone drugs (about 5 or 7) and re-tuning things and eventually (after more than 4 years), I got to feeling pretty well. As someone else mentioned, lorazepam is a decent drug for anxiety. Another is cetalopram. I take both in light doses, 0.5mg and 20mg, and they have certainly helped. I would see your doc and level with them and get some help. I know what you are going through and it seems like the end of the world now, but you don't have to feel like you do. I used to have to tell myself continually that tomorrow was another day. It was very tough some times.... Good luck and keep us advised....

BTW, you can bitch and complain and rant all you want here. We're a 24 hr service with people across all time zones.... Someone is most always logged onto the forum...

[LisaT]

It sounds as though you could use a bout of what seems to be the wonder drug Rituxan. I know it doesn't work for everyone, but many on here have had success (some very quickly) with this drug. If It hasn't been tried for you, you may want to ask about it. Prednisone controls symptoms but doesn't bring about remission per se, if my understanding is correct. Something more is needed to treat the underlying disease process. A vasculitis centre sounds like a good idea for you.

[mishb]

Hi Brian, I am so glad that you finally decided to seek out a forum like this.

Everyone above has given some awesome advice

I hope things start looking up for you now - that first part (you finding us and speaking out) was the hardest part.
Now we hope to follow your new journey in finding better answers.

[Jayne 14]

Welcome I echo every word from all
You are not alone anymore
Help & advice is here from us all weggies xxx


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