Intro

[Brastius]

Hi All,

My name is Brian Jones, and I have had WG for 18 years now. I never really had a need to go to a site like this before now. I just felt like this stuff was way too personal to share, and I really had no desire to "bond" with anyone else who had this disease. I've always been a loner, so I've been dealing with this by myself. I'm still not sure what motivated me to come here, but I suspect I'm depressed. Well, more than suspect.

I first showed signs of the disease in August of 1996. It started out as a stiffness in my left ring finger, which continued for a week before moving to a finger on my right hand. It played hopscotch like this for the next year, eventually working its way into my legs. I didn't get medical help at first for a couple of reasons. One, because I had no insurance, and two, I thought I had brought it on myself by working out too much.

Finally, after having to quit my job from not being able to function, I was admitted to the hospital. While there, I responded well to intravenous Prednisone, and the doctors went to work trying to figure out what it was that was killing me. After some discussion, they settled on Kidney-Specific Vasculitis, and began treating it with Cytoxan and Prednisone.

Fast forward a few years. In July of 2001 I came down with flu-like symptoms, which progressed into a full-blown problem. My nose was running like a faucet, and my head felt like someone was drilling into it. After 2 months, it had gotten so I could not function at work, so I went to the ER to find out what was going on. After being admitted to the hospital, they had found that my disease had returned, and it was attacking not only the soft tissue of my left sinus, but the orbit as well. It was during the stay here that my original diagnosis was changed to WG.

I am now 42, and I am on Peritoneal Dialysis. My face is mostly collapsed, my left eye is frozen in the socket, and most of my teeth are breaking off. I'm still working, but I'm worried it won't last as I am having problems keeping motivated and I get tired easily.

So, that's me. I've been hanging on for a long time now, but it's getting way harder to keep going. I mean, it's not like I know how to give up, but I'm pretty sure I'm starting to learn.

I don't mean this to be some sort of Pity Party, I just can't tell my family or friends any of this. If they thought I was getting to the end of my rope, they would just worry more.

Thanks for reading.

[renidrag]

Welcome Brastius, a lot of good, intelligent and sharing people here. I can't relate to a lot of what you have gone through though others will come along and be a great resource and encouragement to you. Hang in there, it always seems to get better somewhere down the road.
Dale

[LisaT]

Hi, Brastius, and welcome. I'm sorry you've suffered so much and feel alone in your suffering. Not any more! This is a great place to find support and friendship with people who get what you're going through. We all have different symptoms and stories, but lots in common. It sounds as though you could benefit from talking to your doctor about the emotional impact of the disease. It's very common to get depressed and I notice many doctors don't really address that side of things or even ask how you're feeling emotionally. It makes sense that when they need to get treatment in place and save lives, they focus on the physical. But one affects the other and it can become a vicious cycle. When I'm depressed or anxious my other symptoms act up. Have you thought about asking your doctor for a referral to someone you can talk to about all of this? Often hospitals even have a social worker available. I've been meaning to ask about a referral myself.

You have us now, and whatever you're going through, chances are someone on here knows something about it. Feel free to share the good, the bad and the ugly. I look forward to getting to know you. I will add you to my thoughts and prayers.

[lag713]

Welcome Brian,
I'm so sorry to hear that you've had to go through all of that. It seems as though you may benefit from going on disability once you are no longer able to work. Other people on the forum should be able to give you advice based on their experience.

Make sure to do everything you can to support your health and maintain or improve your quality of life. Your friends and family would worry if they knew how you are doing but they would also want to help you. Having support from family and friends can be positive. As an example, my grandmother was hiding her dementia for several years. We wish she had discussed it with us before it came to such an advanced stage so we could assist her in finding appropriate treatment and help make her life a little easier. We think she would have been in a better place now. I would rather have known and worried than not known. I'm glad that I know now. The family is banding together to do what we can to help.

Are you currently receiving any other treatment besides the peritoneal dialysis?

[StephaniaWi]

Brian I am really sorry you feel this way, and I do not blame you. That all sounds awful. You are not alone, and it is hard to talk about. Sometimes I even have to stop myself from thinking about it or I will just lose it and cry uncontrollably. Who can blame you for getting tired easily, what you are going through has to be really awful. I hope you will get some relief and hopefully there are some resources to help you financially if you cannot continue to work. I cannot offer much advice like many of the knowledgeable people here but I wanted to say I know it sucks hard and you shouldn't feel alone.

[Brastius]

Welcome Brastius, a lot of good, intelligent and sharing people here. I can't relate to a lot of what you have gone through though others will come along and be a great resource and encouragement to you. Hang in there, it always seems to get better somewhere down the road.
Dale

Thanks, I appreciate it.


Have you thought about asking your doctor for a referral to someone you can talk to about all of this? Often hospitals even have a social worker available. I've been meaning to ask about a referral myself.

I'm not really comfortable talking to a social worker. They have them at the dialysis centers I've been to, but it's hard to open up like that one on one.


Are you currently receiving any other treatment besides the peritoneal dialysis?

I'm on maintenance Prednisone for the WG. It's never really gone into remission, so I've been on it continuously for the last 18 years. I was on Imuran for a while, but last December I noticed it was causing my arms to feel like they were sunburned. I stopped taking it, because I was worried it was giving me cancer. It not only stopped that, but also lessened an anxiety problem I've been having.

[StephaniaWi]

I have been on .5mg of lorazpam as needed for years. Ever since a pretty icky car accident. Sometimes I go months without needing it, sometimes I have to take 1 a day. It is very low dose but if I take it before the anxiety gets bad it stops it. I was recently on bactrim again for some dental work gone haywire and I was having strong bouts of anxiety, like no identifiable cause that I was worried about but just overwhelming powerful anxiety feelings. I have no doubt meds can cause it. If it bothers you, you really should ask about something for it. I mean you are just going through so much you know, it doesn't make you weak for just needing some relief. I know you said stopping the imuran helped with it but just in case it is bothering you still. I do not know but it doesn't sounds like prednisone is doing the trick at all, so I wonder why they never tried cytotoxan or mycophenolate, maybe the cost is skyhigh so your insurance, if you have any, will not cover it.

[Brastius]

I was on cytoxan for about 6 months when I was first diagnosed as Kidney-Specific Vasculitis, but I had such a bad reaction to it that they haven't pushed for me to try it again. The Imuran was the last thing they tried, but I never noticed that it made much difference.

Luckily, I do have good insurance through my job. Well, maybe I shouldn't say "luckily." It's more like through design. It was because of my disease that I went and actively looked for a job that had insurance. Before that it wasn't anything I was concerned with.

[annekat]

Welcome, Brian, and thanks for sharing your story. It's time now for you not to feel so alone with this disease, so I'm glad you found us. This forum is the best I could ever have imagined it to be, held together lovingly by a bunch of sick people! I hope you will check in everyday and see what is going on, and participate in the discussions as much or as little as you feel like.

[Psyborg]

Are you close to any of the Vasculitis centers (Ohio, Maryland, Utah, Mn)? I would say that Prednisone alone is not sufficient treatment for what you are having. Expert doctors at one of the clinics could greatly improve your care potentially.

[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:hug2:

[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 :thumbsup:

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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