Newly Diagnosed. Lots of questions, lots of concerns.. Slightly in the dark

[carriej22]

Hi Folks,

Well I have a bit of a story. I am a 22 year old girl from New Brunswick, Canada. I guess everything started last year with persistent sinus infections, general unwell feeling.. But I didn't think much of it really. They told me I was allergic to my pets, so I just dealt with it.. The pets stay

Fast forward to about this March. The fatigue is getting up there, but again.. I'm thinking I'm just overworking myself or something, no reason a 22 year old should be sick all the time right? I pretty much accepted I would never breathe out of my nose, even after having sinus surgery in the fall to "fix" it. I was busy planning my wedding and being a relatively regular 22 year old.

Ok.. So, two weeks before my wedding (I got married last weekend, June 9) I land myself in the hospital. Overnight I literally broke out in these ulcerative red marks, which terrified me. I also could hardly walk, bend, or move. I lost my hearing in one ear and my eyes were solid red. They thought I was having an allergic reaction, but my on some steroids and sent me home. In a few days I was feeling better, but still not good. Then as soon as the 5 days of steroids were up, I was back again. This time, the doctor said he was going to test me for everything possible but not to worry as he didn't think it was serious. Well, less than 12 hours later I was being sent to a hospital 2 hours away to see a specialist as I had positive something-or-others and they thought it was Wegener's.

Well, it was.

So here I am, the weekend before my wedding receiving my first round of Rituximab and steroids and all this stuff I never even heard of. Wondering if I'm going to be even able to walk down the aisle. Injecting myself with methotrexate, which doesn't hurt but is just plain weird. I got home the night before my wedding and miraculously my skin cleared up, and I could walk! It was a good day.

But now that it's all over with, I have questions. I was told basically nothing about this disease other than the fact that I was lucky, and it needed to be treated ASAP. I have now had 3 Rituximab infusions and due for my last one next week. I don't see the rheumatologist again until June 26.

I am currently on:
Rituximab (4 infusions)
Methotrexate (25mg once a week via injection, blech)
100mg prednisone
Vitamin D
Folic Acid
Calcium

What kind of life am I expecting here? I had nodules on my lungs (coughing up blood, however I am no longer coughing up blood) and my kidneys did have protein and urine, but they didn't tell me much other than that.

I am terrified. Here I am, newly married, about to plan my life and now it's all upside down. I don't know if I will be able to have children (or want to bring children into a life where they need to watch their mother be sick - I watched my mother be sick my whole life, it's not nice) or how long I am supposed to live. Am I looking at a relatively normal life? Do I need to stay indoors? Hide from people? I work and touch people for a living everyday and I enjoy my job. I would hate to switch jobs.

As you can see I'm kind of all over the place here... I am also a big "foggy" I am not sure if it's from the medication or not, but my mind definitely doesn't seem to be working as good as it should be. I'm also very.... cranky

And now on a positive note.. A wedding photo from last weekend, to throw something positive into this depressing post




Any advice, knowledge, wisdom, inspiration.. I would appreciate it so much. I am seriously lost and I don't know what I'm aloud to do, what to expect, what kind of life I will have... I never heard of this disease until a month or so ago, and it terrifies me. I am not happy with the information I have found on the internet.. I hear stories of people living 20 years, but at only 22.. I would like to live longer than that ... I want to do the best things possible and give myself the best chance at overcoming this disease.

[Dirty Don]

Welcome Carrie, glad you found 'us'...not that you would've ever thought we existed at all it appears! LOL! Anyway, on this site you will meet people who have what you have to all sorts of degrees, you will hear info that YOU must disseminate for yourself and use to your best, most everyone is friendly and understanding here and have some kind of experiences from which you can benefit. As per my own experience to date: was dx'd almost a year ago, spent time in hospital surviving, am on many of the same drugs you are on, and just a couple of months ago have been declared 'in remission', albeit a medical one. Implying I will be on the important drugs for a while longer. But, since my WG was caught fairly early on (I had many of the same symptoms you have spoken of), I stand a good chance of staying in remission. This is not to say that I have or will return to my once 'normal' life, but I have a life, and after last summer, I'll take that! Hang tough, you are young & stand a very good chance of stalemating the WG IF you have good docs who know & understand WG as much as they can. Don't know how close you are to a WG clinic/hospital, but do look into clinics/docs who are experienced in dealing with WG directly, not just reading out of a medical book. Best to you, keep us informed, ask questions, make statements, and do your best at all times!

[carriej22]

Thanks for the advice.

I am a bit concerned about the doctor situation. I was looked at by many emergency doctors, and now I am being seen by both my family doctor (who has 4 wegener's patients) as well as a rheumatologist in another city who seems to deal with wegener's patients throughout the province. There is no "WG" doctor or expert here, however my rheumatologist does seem quite thorough and does deal with a lot of wegener's patients.

It sucks having to travel for treatment, but it just isn't offered to the same level in my city. They don't even use Rituximab here, so for the past three Fridays I have been making the two hour trip down, and the two hour drive home again. Rather be safe than sorry.

I am mostly concerned about the fogginess.. I need my brain! I work two jobs, I am an esthetician and I also build websites. Esthetics is for fun, websites is where I make the majority of my income. I need my wits about me!

[pberggren1]

Welcome to the Forum Carrie.

I love your wedding picture.

There is no doubt Wegs totally sucks. But there is much hope to getting back to somewhat of a normal life.

I would most likely think that the fogginess is from the pred. How much pred are you on now? Are you tapering yet?

At least you were not put on Cyclophosphamide. I sure hope the Rituximab works well for you.

I would persue having children. They are the greatest gift from God to a married couple.

I also suggest that you either have your Rheumy or family doc consult with one of the big docs listed with the VF. Or you go see Dr. Carette in Toronto. You would not have to see him often. Maybe twice year at most.

You will find lots of support on this Forum.

I am also in Canada. I'm in SK.

[Debbie C]

Hi Carrie, What a beautiful wedding picture,glad you were well enough in time to enjoy it.They are giving you alot of RTX (Rituximab ) at once.But if that what does it ,they know alot more than I. And so do most people on this forum. You will get alot of good info and support. So any questions you have don't be afraid to ask. I was dx. in July 2010 and I'm in medical remisssion now. The preds. you are taking will definately make you jumpy and along with everything else foggy. Hang in there,now that they know what you have it can be dealt with.

[carriej22]

Thank you all. I was very happy to be able to enjoy my wedding, at one point a week before the wedding (when I was having trouble even rolling over onto my side in bed!) I was just praying to be able to walk. I did skip out of the dance an hour early but no one noticed ... Everyone knew I was sick so people were very accommodating and understanding that I wasn't up dancing on the tables with the rest of my wedding party.. LOL

If the fuzziness/fogginess/crankiness is from the Pred I can deal with that for now. I would take it over the pain any day. I have only been on Prednisone (100mg) for a few weeks, they haven't mentioned tapering it yet. The first week I was on it I was taking 25mg every 6 hours, and now I am taking 100mg once daily because I wasn't getting ANY sleep doing the 6 hour doses - I'm still having a hard time catching more than 2-3 hours of sleep at a time, but last night I got 4 so maybe that's improving. Between getting up to pee and plain restlessness it's been an adventure.

I have an appointment on the 26th with my rheumatologist. Hopefully I get a little more insight.. It was just "boom, boom boom!" getting everything done and fixing me up so I could get married. I told them they HAD to fix me.. lol, and thankfully they did. I sweat like a hog throughout the whole wedding since I had a RTX treatment the day before and for whatever reason I usually get cold sweats for a day or two afterward.. But atleast I could walk!

It is definitely nice to have a diagnosis, I guess it's just hard because here I am -- thinking I have allergies or a sinus infection and then the next week being told about things such as lung nodules and renal failure, and then all the scary side effects of the drugs. I had hardly taken a tylenol before all this. I remember sitting in the office asking if they were SURE.. Im like.. Are you SURE? And he's looking at me like I have 5 heads. I'm like.. You're SURE? I must have sounded insane.. LOL, but I just couldn't believe it.

[pberggren1]

How long have you been on 100mg of pred? How many weeks? I seriously think you should be tapering by now. And 100 mg sounds a bit high to me. And I have not heard of giving it every 6 hours like that either. This is just one reason you need a Wegs specialist on your case. Usually the high dose of pred at the beginning is about 60mg for most people. Then you start to taper after 4 weeks.

[carriej22]

I started the 25mg x every 6 hours on May 31, which was the day I officially started treatment. I had my first RTX on June 1, then I had one June 8, and again on the 15th. I got for my final RTX on June 22.

On the 7th (because I wasn't sleeping) they put me on 100mg (2 50mg pills) first thing in the morning with breakfast. I was given a month's prescription for them.. So I am not sure what's next after this, I am assuming he will tell me when I go on on the 26th which will be close to a month of being on 100mg a day.

[annekat]

Welcome, Carrie,

You are a beautiful bride and your husband looks like a very sweet guy. Congratulations.

My advice is to keep reading this forum, asking questions and sharing what you are going through. Little by little, a lot will sink in and you'll become familiar with all the terminology and the various ways this disease affects people. And yes, make sure your doctors are open to consulting with specialists, or hook up with the doctor in Toronto that Phil mentioned.

100mg./day of pred sounds like a heck of a lot to me, too. I wonder if you ever needed to be on that much, and it seems a few weeks is a long time not to be tapering yet.

[pberggren1]

I would see if you could go down to 60mg right away. And then start to taper when you see the doc on the 26th.