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 :flapper:

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

http://img.photobucket.com/albums/v709/zygirl22/ericcarrieeditgood.jpg


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.

[pberggren1]

How much do you weigh? Maybe 100mg is the right dose for you. It is based on weight.

[Al]

Carrie, I would like to comment at some length about your situation, but I can't do that tonight. I will say that the whole business sucks, but staying alive is even better. The other thing I will say now is that "fogginess" sort of comes with the territory, but it, too, is manageable by a dedicated plan: get plenty of sleep; do not eat too much--particularly watch the simple carbohydrates like sugar, white pasta, and potatoes; write at least 1000 words a day; and learn to read the medical literature. Oh, and being argumentative with a willing debate sparring buddy (like your husband, if he is agreeable) is essential. At least, for me, it keeps the brain fog down to an acceptable level when you actually have to work for a living.

My best to you. As much as this really does suck, I think you might be able to carve out a pretty decent life.


Al

[Dirty Don]

Peers thru the fog...Al, Al...is that you...really?!

[carriej22]

I was assuming the pred went by weight aswell, I am a solid 225 or so. But since being on the pred I have gained about 5 pounds. I think it's all in my face too!

Another thing I should mention... I was put on 40mg pred for 5 days and it was not enough to fix my eyes. Not sure if that why it's high or not, but this was before my diagnosis. Seems like my eyes are the first thing to bug me (red, super light sensitive.. Basically lay with a cloth over them). They're still not 100% normal.

However I am going to call the rheumatologist office today just to ask... No harm in asking! I remember when i filled the prescription my pharmacist commented on the high dosage. My family doctor knows as well and she never commented. Hopefully its not more than I need.

[chrisTIn@]

Hi Carrie, welcome to the forum. :smile1:

Congratulations to your wedding!
Wishing you a lifetime of happiness together -that's possible, even with this nasty disease we all share...
I think you will benefit very much from the collected wisdom & knowledge you can find here...

[mishb]

Hi Carrie and Welcome.

Yes we are all on here from all of the world. We have joined this merry band of men and women who all have one thing in common (WG)
We also have each other, when you are happy, when you are sad, when you have just about had enough.....we are here.
The good thing about it being a world wide forum is that you will find someone on here at any time of the day or night.
Australia, The Netherlands, New Zealand, Sth Africa, UK, USA...... anywhere. We all sleep at different times yet we are all here for each other.

I presume they have put you on methotrexate to save you from complications with becoming pregnant later on. Of course, whilst you are taking the MTX injections, you must not fall pregnant, but once you are in remission (and you will be) then you should not have any problem with having a family of your own.

Best of luck to you in your new marriage and best of health to you.

And as always, you must ..........

[Sangye]

Hi Carrie, welcome to the group. Man, what bad timing this disease can have! I'm sorry it hit you the way it did and right before your wedding (though I'm glad you got some treatment and were able to enjoy the day). What a gorgeous picture of you, btw.

I didn't read all the posts in detail but a couple things leaped out at me: For starters, pred dosage is NOT weight-based. 100mg is an extremely high dose to be kept on for so long. With severe involvement they would either do "pulse" steroids of 1,000mg solumedrol (IV form of pred) for 3 days and then lower to 60mg OR start you at 80mg and keep you there for a week before lowering it.

Typical side effects from high-dose pred: foggy thinking, anger, quick temper, tearfulness for no/little reason, increased appetite (esp for sugar, fat and salt), weight gain (esp "buffalo hump," neck, abdomen), muscle loss, racing mind, insomnia, high blood pressure, high blood glucose (steroid-induced diabetes-- will resolve on its own as you taper). Depression is common.

For most people high-dose pred makes them feel much stronger than they actually are. You have to be very careful about overdoing things because your body needs the rest. (High-dose pred has the opposite effect for me-- very weakening)

You need to get a doctor with more experience treating Wegs. Wegs is highly variable. You need someone who is current on all the latest research, not just someone who looks it up in a book. Even the most well-intentioned doctor can harm you with a lack of experience and knowledge. I couldn't tell your location. We can help find you a doc if you let us know.

With a disease like Wegs, you have to do everything you can to educate yourself about all aspects, including the medications. Even if you have a Wegs specialist treating you, you will have to deal with MANY doctors, nurses and other folks who don't know anything about Wegs. This is a tall order for a 22-yr old but you can do it. We have many young members who have done it. We'll help you with info but you have to get involved at your doctor appointments asking questions, demanding explanations, etc.... I have one of the best Wegs specialists treating me but without my participation and feedback he would have no idea what's going on.

[annekat]

Carrie, listen to Sangye! :smile1: (I was doubtful about pred dose being based on weight, since I'd never heard that.)

[carriej22]

Hmm.. Lots of info! This is the stuff that scares me.

I tried calling both my family doctor, and my rheumatologist and no answer at either one. I guess I'll call again tomorrow. I am in New Brunswick Canada, kind of in the middle of nowhere. I am currently travelling to Moncton for treatment via Dr. Docherty. He seems like a well respected doctor, but again I don't really know what I'm up against here. He had a lot of "protocols" for wegener's treatment and did up a special paper for my treatment which just outlines the details (rituximab infusions, prednisone, vitamins, methotrexate)

When I was in hospital the first weekend of June, I did have pulse steroids. 1 GRAM I believe it was every morning for three days. I remember getting a bad taste in my mouth when I got that. However, that fixed my eyes right up and made a huge difference in 24 hours (I was unable to walk, anything.. Within a day my pain was virtually gone). Then I went on the 25mg prednisone every 6 hours, then 100mg once daily in the morning which I am still on.

I don't know what to do now... I don't want to play with anything because honestly I have no idea with this stuff :( ... He did inform me when I initially went in that we were going to "hit it hard" because of the coughing up blood, protein and blood in urine, inability to really do anything.. I was in bad shape. I am in a much better spot now, but now that I am feeling better I'm questioning everything but it's hard since here I am... A relatively normal 22 year old who knows nothing about this type of thing. I'm trying to learn but sometimes I almost don't want to know, if that sounds weird.

Another thing I am concerned about - they told me to not get sick. Well... Seems like the stomach flu is rampant around here the past few days, lots of people in my family had it and my sister was in and out.. Now I'm all paranoid I'm going to get sick. Any special instructions if I do pick up the stomach flu? Just regular care and keep an eye? I might just be being paranoid... But I don't want to take any chances!

[annekat]

Stay away from people if possible so you don't get that flu. Wash your hands often and use hand sanitizer. Try not to touch your eyes or nose any more than necessary. Others can give you better advice on what to do if you get the flu.

I have been lucky. I have not caught any bugs in my year of being treated with immunosuppressants for WG, and I AM around the public in what I do. So it IS possible not to catch something, though I'm not entirely sure why I haven't, since I don't always follow my own advice.

[Al]

Carrie, there are two reasons not to get sick. First is that it is no fun--and you need a lot of fun when you are dealing with WG. The other reason is that a suppressed immune system leaves you open to many opportune bugs. Some of them can be pretty gross. Oh, and a third reason: Whatever immune system you have left can get riled up over any kind of insult, possibly triggering a new flare.

Anne has given you some tips for avoiding other peoples' bugs, but it is impossible to stay away from them totally.

You are right: This and everything else about WG is scary. On the other hand, here we are. A big, fun-loving community. You may even like us....

Al

[annekat]

You are right: This and everything else about WG is scary. On the other hand, here we are. A big, fun-loving community. You may even like us....

Al I am SO much less scared, in fact hardly scared at all, as a result of this forum. I guess it helps that I've done well in my treatment. (I mustn't get too complacent, as things could turn for the worse without notice.) You'll see a wide range of cases on here, from very serious and debilitating complications to people leading quite normal lives. Some people go into remission and it doesn't return. It seems highly likely that you can go on to have a family and the life you imagined. So don't be scared, we are here for you.

[carriej22]

Thanks guys. It sure is nice to have found a "'community" of people who know all about it. I have had to try and explain it to friends and family but really, no one seems to understand. They either go off the deep end and have me dead before my time or the opposite - it's no big deal. There doesn't seem to be any medium ground.

I have some good news, I reached my rheumatologist today and he is going to have me start tapering my prednisone at a rate of 10mg per week until I hit 50mg, and then 5mg per week. I am assuming he will give me further instruction when I go visit him next week. I feel better already knowing that I will be taking less drugs.

I just feel so rotten right now - but again I just found out a few weeks ago what I had so I am guessing that it's normal. I just hope I feel better. I'm not in any pain or anything - just exhausted, weak, cranky and plain useless. I could just sit in a chair all day and do nothing.. Not even really any interest in watching tv or reading or doing much of anything. I find it hard to concentrate. Hopefully all these things will improve.

I'm looking forward to going back to work, but man I hope this fog clears.

[annekat]

It will get better, take our word for it, and I'm glad you'll be tapering the pred. That should help a lot. And what a great new pic of you and your cute husband!

[carriej22]

Thanks, that's an older picture from this Christmas before the prednisone and puffiness set in.. :)

[drz]

Thanks, that's an older picture from this Christmas before the prednisone and puffiness set in.. :)

Hang onto that image as your goal for the future. Once the pred gets tapered down the appearance also starts to change back to more of the old you.

[Sangye]

Carrie, when I was dx'ed I was nearly dead with massive lung hemorrhaging (that had gone on for 3 months and left me with 50% blood loss), severe pain, etc.... My docs did pulse steroids and then dropped me to 60 mg and quickly tapered to 30mg from there. And my case--severe pulmonary hemorrhage-- is considered among the most severe involvement. I do believe your doctor is way over-treating you with the pred. That's very common with docs who don't know Wegs-- much more common than under-treating. His taper is VERY slow. 5 more weeks just to get to 50 mg??? No way.

I suggest that you get in touch with the Vasculitis Foundation and get a consultant involved. You can't get back the bone loss those high doses of pred will cause, among other problems that will inevitably start to kick in. (Taking pred isn't like taking most drugs, where the side effects and imbalances stop when the drug is stopped. Pred causes long-lasting imbalances and problems that are much worse after being kept on high doses.)

It's a lot to take in. This is why you need someone at the wheel who really knows Wegs and explains things. You won't believe how much the fear abates when you get the right doctor. I know you're feeling so exhausted right now it may seem like too much effort. Please trust me. Get help to get a better doctor involved.

[carriej22]

Oops - I should have been more specific! This AM I started on 80mg. So it will be about 3 weeks before 50mg. I'll start with 70 next week, then 60, then 50.. Is this better or still bad?

[Sangye]

It's still bad. Those are very very high doses of pred, especially week after week. 50 mg is still very high. There's just no reason for such high prolonged doses.

[HopeinTN]

Welcome Carrie. I'm new too and can't offer up much advice...except listen to the folks on here. There are very helpful.

Good luck and glad you found us!

[carriej22]

Bah! To live in the middle of nowhere.

Im not quite sure what to do at this point. Do I ask him to refer me to someone else? He seems so confident in his treatment plan. He agreed that it was a lot of prednisone, but he told me that I was young and he was going to "hit it hard". Now, before diagnosis I was on 40mg of pred per day and that did not fix my symptoms. Is there a chance this is why it's higher?

Should I just take less myself and taper down different on my own? And if so, how should I do that? I feel like I am doing something really wrong here (years of being told to listen to your doctor!).

On another note, I found someone in my city who has wegs. Young person like me, my husband grew up with him but did not know it was wegs that he had. He's had it for 10 years and is being treated by the same Rheumy. He said that the Rheumy saved his life. He now lives normally, works and has a pretty normal life. Positive things!

[Sangye]

DO NOT alter your pred dosage yourself. That can be deadly (for adrenal reasons and some other complications) and at best can cause the Wegs to go wild.

I don't like it when doctors use terms like "hit it hard." It's your body they're hitting! They are there to treat Wegs, not declare war on your body. That's just my opinion. Lots of people love to use terminology like "I'm battling Wegs" or whatever. Gives me the heebie-jeebies.

The fact that you're young means he should be even more conservative with the drugs. My Wegs specialist at JHU refers to me (age 48) as "young" and is very conservative when using these drugs. He's always looking down the road, even when I'm not.

Pred alone will not control Wegs, not even 40 mg, not even higher doses. That's why they add an immunosuppressant to the mix (eg methotrexate). So it's not surprising that your symptoms weren't resolved with 40mg pred alone.

[Sangye]

Bah! To live in the middle of nowhere.

Im not quite sure what to do at this point. Do I ask him to refer me to someone else? He seems so confident in his treatment plan.
My original rheumy in Arizona also seemed very confident. His lack of knowledge about Wegs nearly killed me--several times. It caused terrible complications and permanent damage.

Here is a thread I started awhile back, that lists the various options for getting a good doctor involved no matter where you live.
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/986-what-newly-diagnosed-need-know.html

[carriej22]

This is all very interesting. I am on weekly methotrexate as well. I am not very adept at giving it to myself and I always seem to turn my skin yellow around where I put it regardless of what I do.

This really is all so overwhelming. It's so hard feeling like crap. I just want to sit in a chair and drink green tea and watch my fish and feel sorry for myself.. LOL.. Sounds terrible, but it's true!

I have an appointment with both my family doctor and my rheumatologist next week. I think I will listen to what he has to say and go from there. I am taking my husband (who is livid) and we will express our concerns. I just hope my husband doesn't strange the man! I go see my family doctor the following day and I will ask her if it's possible to see if I can find an actual specialist. Looks like I will have to travel far and wide to do so however, as I can't seem to even find anything in the atlantic provinces. That is not going to be easy :(

[drz]

You don't need to actually go anywhere as your treating doctor can consult by phone, video chat etc with an expert and review your case. Most of the experts listed on the Vasculitis foundation web site will do this free too. They can help you find one appropriate for your case.


This is all very interesting. I am on weekly methotrexate as well. I am not very adept at giving it to myself and I always seem to turn my skin yellow around where I put it regardless of what I do.

This really is all so overwhelming. It's so hard feeling like crap. I just want to sit in a chair and drink green tea and watch my fish and feel sorry for myself.. LOL.. Sounds terrible, but it's true!

I have an appointment with both my family doctor and my rheumatologist next week. I think I will listen to what he has to say and go from there. I am taking my husband (who is livid) and we will express our concerns. I just hope my husband doesn't strange the man! I go see my family doctor the following day and I will ask her if it's possible to see if I can find an actual specialist. Looks like I will have to travel far and wide to do so however, as I can't seem to even find anything in the atlantic provinces. That is not going to be easy :(

[AmyA]

Hi Carrie, welcome to the group. I joined this site recently after dx last June. I learn so much from this site. Don't take any symptom for granted. If you have any questions, no matter how small, you can find answers here. Post new questions or go through old threads. It's a wealth of information from REAL patients with REAL experiences. I hope you get only the best treatment and are on your way to a quick remission. Keep the Faith and stay as positive as possible.

[Sangye]

Carrie, it's perfectly natural to go through phases of being angry or feeling sorry for yourself. Your entire life just got upended, after all. Just don't let yourself stay in those places too long.

As far as traveling to see a Wegs doc, yes it's difficult but this is your life. I don't know anyone who has done it and regretted it. My first local rheumy was 5 minutes away but like I said, nearly killed me. Then I started seeing a rheumy at Mayo (Arizona), which was a 3-hr drive each way across the desert. He wasn't a real Wegs specialist but was better than my local guy. Here in Maryland I drive 2 hrs each way to get to JHU for a Wegs specialist. All of my docs are there. Yes, it's a pain to go that far but it's worth it to have the peace of mind knowing I don't have to question my care.

I've seen so many people just try to wade through with an unskilled doctor early on, instead of traveling to a proper one. Wegs can turn on a dime and become entirely unmanageable overnight. That happened to me on Day 3 after being diagnosed. I saw my doctors scramble with fear and uncertainty after that-- not a good place to find yourself in.

[pberggren1]

I've had Wegs since 2003. In 2010 the things got worse and I didn't have confindence in my doc any more. So I made an appointment to travel across country to see Dr. Carrette in Toronto. I prayed that I could have my own Wegs doc in my town or much closer at least. Days before I was to go I had a Wegs doc delivered to my town. My prayers were answered and I did not have to go to Toronto.

[carriej22]

Thanks everyone. I'm feeling less cranky now ;p

I sat down tonight and did a hunt. I called complete strangers and probably scared the heck out of them, but they were all quite nice. I managed to find two more people in my city who have wegener's. Both are being treated by the same Rheumy as me 2 hours away. Both of them were/are happy with him. I'm so conflicted. One man, has been diagnosed for 13 years and the other is a woman who has been diagnosed for 3 years. Both of them are currently in remission, and the man is currently taking NO drugs.

Im still going to see what is up when I go, and see if I can get another doctor on board. Is there an etiquette to this? Do I just call the vasculitis foundation?

My ENT is also on board in this... However, he did not notice my wegs. However now that I am diagnosd he is very ... Interested in me. He told me he never thought it was wegeners and was genuinely surprised when I told him, and he did my sinus surgery in the fall when all this stuff was going on.

So many doctors!

I think I also need to see if some sort of financial assistance is available - being self employed and not working for a month is rough. One of my businesses I might not be able to go back to either, I'm going to try but it's such physically demanding work and involves touching people constantly. There is also a doctors office in the building so there's a waiting room full of sick people about 10 feet from my business door. Im just not sure how that's going to fly.

[annekat]

Carrie, I guess if I were you I would stick with my doctor for the time being, since he agreed to reduce your pred, and others in your town have done well with him, but just pursue the idea of getting a true Wegs specialist as a consultant. Phil mentioned a Dr. Carette in Toronto whom you could see a couple times a year and still keep your current doc. I don't know if he is on the VF list but Phil must have his reasons for recommending him. Or you could find someone to consult with from a distance, for free, and not have to travel, as someone else suggested. If your doc would go along with this, it would be to his credit. I, too, have wondered about the etiquette and protocol, as I have thought of doing the same thing, but someone else can clarify that. At least you could have a true specialist line up in case things took a turn for the worse. It's nice that your current doc listened to you on the prednisone, and perhaps he'll agree to speed up the taper a little more next time you see him. (It can go faster at the higher doses; it's when you get to the lower ones that you need to slow down, when you've been taking it that long.)

[Sangye]

I have seen so many people be more concerned about offending their doctor than protecting their health. I have made that mistake myself. Please realize that when all is said and done, you are the one left with the fallout of their actions and inactions.

Before I got to JHU I didn't know there were Wegs specialists or even the VF and their consultant docs. But if I had, the conversation with my docs would have gone like this: "I really appreciate how much you've done for me in trying to get this disease under control. Like anyone diagnosed with something serious, I've been researching and educating myself about all aspects involved, so as to be a full participant in my care. Wegener's is much more complicated than I thought! In the process I've met a lot of people with Wegener's from all over the world. One thing they all seem to agree on is that people with this disease do best when their care is overseen by a doctor who has treated a great many cases, due to the highly variable way that Wegs can present and the complications associated with the disease and treatment. I've discovered that there are doctors who specialize in treating Wegs, seeing hundreds of them in their practice and participating in Wegs research. I know that you want me to have the best outcome. I would like to get a Wegs specialist involved in my care. I've learned that there are 2 ways to do that, and I'd like to ask for your advice and help as a trusted member of my team."

Then you'd discuss the 2 options of traveling to a Wegs doc or getting a VF consultant. You're not asking for his permission to get a Wegs doc, you're asking for him to help you find one. Emphasize the travel option, since that gets you the better care.

If you take a very matter-of-fact approach then it's easier to have the conversation. If he starts getting defensive, arrogant or in any way opposing you, stay calm and don't cave. Remind him that this is about your health and nothing else. Remind him that you're doing what any patient must do: taking charge of your care.

PS: Before I have a conversation like this I spend some time mentally rehearsing what I'm going to say and imagining it going as perfectly as possible. Picture his ideal reaction. Every time I've done this I go into it calm and it goes as I hoped.

[HopeinTN]

Sangye- that was so well said. I'm printing that and practicing saying that exact thing. I'm thinking about seeing a specialist down the road and I couldn't have said that better. THANKS!

[Lightwarrior]

Sangye, this is excellent advice. As outspoken as I am with the Doctors I work with I had trouble with my rheumy. He is gone now and his replacement is much more amiable and not quite as arrogant. I just don't know him and he travels here two days a week from San Diego, even so I know that I need to find a specialist. It is so hard though my spoons are all gone at the end of the day when I go home and I never have the extra money to travel. I know what you are going to say so I'll say it for you.

Light, what you said is all well and good but if you don't see a specialist you may not be around to use any of your spoons. You have not had an easy time and you need to get to a specialist asap.

[carriej22]

Thank you everyone for all the advice. It means so much to me.

I had my 4th and final RTX infusion today. I am beat. Between the 4 hour roundway drive to the clinic and the infusion itself I am just plain pooped. I got some answers while I was there though. Apparently I was worse off than I initially thought. I had one of the nurses speak to me and go over some of the medications, and she began reading numbers off to my from some of my initial testing - scary. I didn't realize I was that sick. They were all very lovely to me and one in particular made it her mission to ensure that I was receiving the best care possible. She did say that the steroids are indeed high, but she also told me that my Rheumy does have a weg's specialist he works with. This made me feel better. This specialist actually signed my first treatment paper, I'm trying to find it so I can see his name and look him/her up.. lol

I feel much better now. However I am still going to look into seeing an actual weg's specialist myself. I just feel so much better after speaking with the nurses. Hopefully I will continue to get more answers as the days go by. For now I am off for a cup of tea and a much needed nap!

[Sangye]

Sangye, this is excellent advice. As outspoken as I am with the Doctors I work with I had trouble with my rheumy. He is gone now and his replacement is much more amiable and not quite as arrogant. I just don't know him and he travels here two days a week from San Diego, even so I know that I need to find a specialist. It is so hard though my spoons are all gone at the end of the day when I go home and I never have the extra money to travel. I know what you are going to say so I'll say it for you.

Light, what you said is all well and good but if you don't see a specialist you may not be around to use any of your spoons. You have not had an easy time and you need to get to a specialist asap.
That is exactly what I would say! And I'd add: "You are necessary in this world and deserving of the very best care. Yes, it will cost you some spoons temporarily, but you'll get them back. If this were your child or grandchild, you would stop at nothing to get them there, even if you yourself were short on spoons."

And then I would hug you, like this: :hug1:

[Sangye]

Thank you everyone for all the advice. It means so much to me.

I had my 4th and final RTX infusion today. I am beat. Between the 4 hour roundway drive to the clinic and the infusion itself I am just plain pooped. I got some answers while I was there though. Apparently I was worse off than I initially thought. I had one of the nurses speak to me and go over some of the medications, and she began reading numbers off to my from some of my initial testing - scary. I didn't realize I was that sick. They were all very lovely to me and one in particular made it her mission to ensure that I was receiving the best care possible. She did say that the steroids are indeed high, but she also told me that my Rheumy does have a weg's specialist he works with. This made me feel better. This specialist actually signed my first treatment paper, I'm trying to find it so I can see his name and look him/her up.. lol

I feel much better now. However I am still going to look into seeing an actual weg's specialist myself. I just feel so much better after speaking with the nurses. Hopefully I will continue to get more answers as the days go by. For now I am off for a cup of tea and a much needed nap!
Thank goodness for nurses. Nurses have done things like that for me in the past.

Interesting about the Wegs doc he supposedly works with. I wonder if he's consulted on your case. If so, he definitely should be telling you. Even my first lousy rheumy called someone he knew at Cleveland Clinic and told me about it.

Rest up and I hope the rtx works well. It doesn't start working for another 2 weeks at least and can take longer. I don't know if anyone explained that to you.

[carriej22]

Not much was explained about the RTX.. Just all the bad things that could happen to me. :P

I haven't spoken to the rheumy much since the whole process started, he's been basically forwarding everything to my family doctor since he's 2 hours away. I do go see him next week though. I hope he has lots of time.. LOL

I'm not sure what I'm looking for in terms of "working".. I mean I feel ok, just plain exhausted, and very irritated or something; I can't seem to enjoy doing anything. It's a weird feeling. I don't want to do any of the things I would normally do to pass time.. Everything irritates me LOL. I have been spending a lot of time just gazing into space. I am not in any pain anymore, which is what drove me to the hospital (joint pain). No sores, no blood coughing, still nose bleeding though... But I can breathe really well for the first time that I can remember, my sniffer is working great. Eyes are good, but still bugging me a bit. They feel dirty, if that makes any sense. They look ok though, not bloodshot or red like they were before treatment.

I've been having some annoying back pain in my kidney area.. But my urine is testing good and it looks fine, especially compared to what it looked like a month ago.

I just want to sleep. LOL.. I'm lucky if I get 3-4 hours a night.

[annekat]

3 or 4 hours of sleep a night sounds awful. I hope you are in a position to sleep during the day when you feel like it, too. I was on 60mg of pred to start with, and it didn't keep me from sleeping, though I know some others may have had a different experience. But I certainly couldn't work until about a month and a half after diagnosis. I'm also self-employed, and although I wasn't bringing in much money, at least I had the flexibility I needed when I was too sick to work, and could ease back into it gradually, with myself as the "boss". I'm back at my work now and not as productive as I'd like to be, but do give myself permission to take it slow, and I like being the one to call the shots.

[Sangye]

Carrie, rtx takes about 6-8 weeks to start working (counting from the first infusion). Most people tolerate the drug well and have little to no side effects. (I have an unusual side effect in that it makes me extremely weak for 6 weeks). You'll know the rtx is working when your Wegs symptoms improve. It should start working as you taper the pred, so your joint pain should not come back.

The other things you listed-- irritability, staring into space and exhaustion-- are all typical with high dose pred. I'm afraid there isn't anything you can do about it. It gets better as you taper, but you probably won't notice an improvement until you get below 30mg, maybe even much lower.

I'm concerned about the pain near your kidney. When did that start? Is it getting worse or better? Pred masks pain, so if you're noticing pain you need to get it checked out. Please don't wait on that.

[carriej22]

It is definitely convenient to be self employed. I don't need to worry about job security, but it's tough not receiving any income. I usually work two jobs (part time at each, what can I say.. I like variety) so I am used to making a relatively good living and not working for 6 weeks is a bit of an adjustment.

As far as the kidney pain goes (I don't know if it's kidney - its just in that area) I would say its improving. It's not extreme pain, it's just more annoying than anything. It seems to come and go, worse at night when I am fighting to sleep. I think if I could get a good nights sleep I would feel so much better. You think it would have caught up to me by now since I haven't been sleeping for a few weeks, but it's still a struggle to get any sleep at all.

When I was in to see my family doctor last, I mentioned the kidney pain and she took a urine sample and I have weekly bloodwork. She said that everything looked good. Now, I don't know if she meant good like "normal" or good considering. I do know that when I was initially diagnosed I was urinating blood and protein. However, my kidney function was always good.

So much to keep track of, it's mentally exhausting. I get a twinge and I wonder whats going on inside my body. I am hoping I get some sort of immune system back since I'm done the RTX. I know the methotrexate injections and prednisone affect the immune system as well, but I am craving to go back to work. I need to get back to my groove!

[Sangye]

Okay, it sounds like they're monitoring your kidney function well with frequent blood and urine checks. They might consider doing an ultrasound of the area to see if another problem is developing.

As far as getting your immune system back.... Well, it's clear no one has explained to you how rtx works. Aaargh. Rtx destroys the B cells, which are the white blood cells (WBC's) that make antibodies. Rtx works for 9-12 months, meaning that your body's ability to produce antibodies is seriously impaired during that time. So it's not like rtx only worked during the infusions and now your immune system will get stronger--quite the opposite.

If you're being treated with rtx you have to be very careful with exposure to germs. Infections are much harder to treat and are more likely to kill you than Wegs. It doesn't mean you're going to be sick all the time with infections. I've been on rtx since 2009 and have only rarely gotten a cold. (Maybe 1 or 2 a year) I am very careful about everything my hands touch while out in public, using hand sanitizer frequently. I don't go shopping during crowded times. I don't allow friends to visit if they're sick or in contact with people who are sick, etc.... It's an adjustment but well worth it.

[carriej22]

Well holy poop. I was under the impression my immune system was going to come trotting right back. This is not good.

I am very wary of germs - and I do catch colds on occasion but rarely have any type of infection. If I get a "cold" am I guaranteed an infection or no? I always seemed to have a hard time kicking colds, however.

They told me about the B cells. I guess that just didn't mean much to me, if they had of said white blood cells it would have made more sense.

This whole thing just seems to be getting more and more fun everyday. I wonder if I will need another rtx round? He seemed to think I may only need the one and go from there... I guess I'll find out in a few days.

[pberggren1]

It is the W and Z cells we have to be more concerned with......lol.

You will probably get 4 infusions of rtx spaced one week apart.

[carriej22]

Haha!

Yes I have finished my RTX treatments for now. I did have 4 treatments, one week apart. I guess I am just wondering if I will need to receive more in the future. It's not much fun... :(

Waiting game now I suppose...

[Dirty Don]

Well holy poop. This whole thing just seems to be getting more and more fun everyday. I wonder if I will need another rtx round? He seemed to think I may only need the one and go from there... I guess I'll find out in a few days.

Carrie, Carrie, Carrie...no it is not fun, nor is it a 'quick fix'...you've got this thing...probably forever unless someone somewhere comes up with something that resembles a cure...probably ain't gonna happen anytime soon as no one knows, yet, where WG comes from, only suspicions, or how we get it, again only suspicions. Sheesh!

In the meantime, I got bronchitis about 5-6 mos into my treatment (mtx & pred)...panicked, calls to WG docs, etc. They simply sent me to my internist to be treated 'normally' for bronchitis as long as no WG symptoms were popping up. Now, recovery may not have been as quick, but I did. And, as I looked back, it was my fault in that I was hanging around some fellow golfers who had recently endured their own bouts of bronchitis...seems one of them may not have been that far along in his treatment...duh!

Hang in there, and always ask questions if you don't get it the first time with your docs, as Al has pointed out numerous times...they are YOUR employees now! Take care!

[Sangye]

Carrie, all the drugs for Wegs have the same basic goal: to suppress the immune system. The difference is in how they do it and how strongly they do it. Rtx is one of the two strongest immunosuppressants used for Wegs. So as long as you're on drugs for Wegs you'll have to be very careful. (Also, your immune system doesn't come roaring back once the drugs are stopped. In terms of Wegs that's a good thing, but in terms of infections it's obviously not.)

Be aware that pred is also an immune-suppressant, especially at higher doses. This is one reason why doctors should use it conservatively. It makes you more susceptible to infection while masking the signs and symptoms of infection. It also greatly slows healing time of infections and other injuries. The longer something takes to heal the more likely it is to become infected. Oy, the joys of pred! :rolleyes1:

If you do get a cold, it doesn't automatically turn into anything nasty. Last year I got a cold during my 2nd week of rtx infusions and while it completely knocked me on my butt, it also resolved within a few days. Sometimes a cold while immune-suppressed just takes longer to resolve but it doesn't become more serious. You don't need to let your doctor know about every cold you get, but definitely call them if you get a flu, a lingering cold, chest symptoms, sweats and chills, or a fever over 100 degrees.

Another monkey wrench: It can be very tricky differentiating infection from Wegs. Even Wegs specialists can't always do it.

A tidbit to keep in mind: If you wind up going to an ER or hospital for anything, make sure they know right away that you're immune-compromised. I always insist on being allowed to wait somewhere away from all the sick people in the ER.

It's frustrating to me that your doctor hasn't explained all this. Every single thing I've mentioned is generally covered in the first couple visits. I'm gonna make my angry face now. :mad1:

[pberggren1]

Maybe Batman needs to come out east for a visit.

[Sangye]

Batman needs to go slap some sense into Carrie's doctor. LOL

[pberggren1]

I'll fire up the Bat plane.

[carriej22]

LOL

Well at least I'm figuring some stuff out. I only ever met my rheumy once before treatment. I was diagnosed on a weds, shipped off to another city less than 12 hours later and started on treatment ASAP. Rheumy visited me while I was an inpatient. It was like... Bang! It was a "treatment first ask questions later" situation. He gave me no options really. Said at this point we needed to act fast...

I am curious as to what's next, hopefully when I get back on Tuesday I have less questions... And not more!

[Sangye]

Carrie, yes sometimes they have to treat you quickly when diagnosed. He still should have taken time while you were inpatient to discuss the disease, treatments, precautions, etc.... Discharging you from the hospital without that info was negligence on his part.

[carriej22]

Yes, he definitely should have. Mind you, I was a complete mess. Maybe he thought I was nuts... lol

I basically hyperventilated in his office. Now tomorrow the real fun begins.. It will be interesting to see what he tells me since now I know a little bit about what I'm up against after speaking with all of you.

[annekat]

It is definitely convenient to be self employed. I don't need to worry about job security, but it's tough not receiving any income. I usually work two jobs (part time at each, what can I say.. I like variety) so I am used to making a relatively good living and not working for 6 weeks is a bit of an adjustment.

Yep, it is hard to go without income, for sure. I had to get help from family members when I was out of it for 6 weeks. And I was making so little to begin with, but that ended up being in my favor, along with my age, when it came to getting SSI disability. It's not normally at all easy to get. I am grateful for it now, for it allows me to continue with my business without stressing out so much about finances..... not that it still isn't a bit difficult making ends meet.

[Sangye]

Yes, he definitely should have. Mind you, I was a complete mess. Maybe he thought I was nuts... lol

I basically hyperventilated in his office. Now tomorrow the real fun begins.. It will be interesting to see what he tells me since now I know a little bit about what I'm up against after speaking with all of you.
Your reaction was completely normal given the diagnosis and the treatment he decided to begin immediately. It's his job to deal with that. I'm looking forward to hearing how your appointment goes. I hope he makes things right and helps you find the best care.

[carriej22]

Well. I don't know if I'm more confused or less. The man seems like an excellent doctor however. He just makes me feel... Sad! LOL.. He is very to the point of stressing how serious this disease is... Which I know already...

He told me I would go for a second round of RTX in December... Which will be fun, around Xmas.. boo :P He also told me I would be on methotrexate for quite ahwile... Several years. I hope I don't lose my hair.. I've noticed some thinning.

The pred he is weaning me off of, thank god. He is sending me somewhere for some more testing, and he wants to see me every 6 weeks. He said this is a disease you need to keep an eye on... And that I will see a lot of him for the first few years. Apparently he has some kind of track record or something - he said that only 25% of HIS patients have a flare in the first 5 years... Some have gone much longer. He seems proud of this - I don't know what to think of that.

He told me he was satisfied with the way the treatment was going, but to keep "doing what I'm doing" and behave myself. I think he was speaking about drinking (since I'm 22, and most 22 year olds it's a constant party), but I don't drink anyways. I think that we will get along much better when he actually learns my personality, because I think he's giving me a hard time because I am so young, oh well.

Anyway, now I am off to my family Doctor 45 minutes away, and then back into town where I live for bloodwork. My family doctor is very understanding and I'm sure she will prod about what he said yesterday. So I'll probably learn something new from her. Another busy day. Maybe then I'll come home and have a nap.

[Dirty Don]

He also told me I would be on methotrexate for quite ahwile... Several years. I hope I don't lose my hair.. I've noticed some thinning.

I'm on mtx also, noticed hair thinning and loss after about 2 months...doc increased my dose of folic acid...it all has come back, albeit wavy...I've never had a curly hair on my head in my life till now. I expect it will go away as the drugs decrease/cease.

[annekat]

I think your hair will just thin but not disappear to the point where a lot of people will really notice it. I already had thinning hair from getting older and the CTX thinned it further, but I'm the only person who ever mentions it. I'm now on MTX so don't expect it to grow back in fully anytime soon.

I'm not sure what to think about your doctor. He sounds very self-assured. It sounds like he is too much into the doom and gloom since you already know about the seriousness of the disease. He could easily take the other road and reassure you instead that many people do well with treatment and go on to lead reasonably normal lives. You might try to find out the name of the specialist you earlier said he was consulting with, and to what extent that person is involved. You could also enlist the help of your family doctor in trying to figure some of this out. Your doc sounds a bit full-of-himself about his supposed track-record, etc. I wouldn't blame you if that makes you a bit uncomfortable.

[Sangye]

I agree with Anne about him sounding full of himself. I see one of the world's leading Wegs specialists and he would never, ever boast or make a claim like that. The docs who really know Wegs are humble about their role, acknowledging that they don't really understand the mechanism of Wegs and don't have any way to predict who will flare and when.

My mom always said that arrogance and incompetence go hand in hand. I've seen it proven so many times.

[drz]

My thoughts are maybe a more aggressive treatment approach might actually reduce the percentage of flares, BUT is he factoring in the long term side effects of the treatment received. Some times the damage from the drugs and treatment are as bad or even worse than the the disease being treated. Jack often talked about how long term usage of steroids had wrecked his body. I am following a study in Canada where they cured diabetes with a surgical implant but don't know if the immunosuppressant drugs the people must take to avoid the body rejecting the implant cause as much damage or possibly even more than having diabetes. Only years will tell if people live longer and are healthier long term. Weighing the damage from our treatment versus the damage of our disease is an art and difficult balancing act. Many new drugs and medical treatments seem very promising but end up being quickly stopped when the researchers find the new experimental treatment is doing more harm than good.

[carriej22]

RRRRRRRRRRRRRRRRRR. This whole thing has got me wired today. It was just a bad day. Today is MTX day (I hate poking myself) and I am just plain cranky. I don't know what I should do, I've got doctor's pulling me this way and that. I just started seeing an ophthalmologist because my family doc wanted me to have my eyes looked at since she wasn't happy with them, and now he's jumping on the wagon too. So this is now 3 specialists (ENT, eye, rheumy) and my family doctor. Along with the mystery wegs doctor that I still haven't identified. I need to dig through my purse and find that paper.

Free healthcare is great, but sometimes I wonder if it comes at the cost of being a human lab rat.

I feel terrible today. My shoulders are achey and I am one grumpy girl. My face is huge. It feels foreign and my eyes feel squinty. On top of everything, I am going back to work next week. I can't hold off any longer, and I need to start making income again. If we didn't just spend a ton of money on our wedding I might have been able to stay off longer, but it needs to be done.. Wish me luck.

I am also tired, yet can't sleep. Buzzing, yet exhausted. It's a weird feeling. I don't know what to do with myself and I feel extremely agitated. I just wish I could either sleep it off or get some energy and do something. I'm like being pulled both ways. Blech.

[Lightwarrior]

RRRRRRRRRRRRRRRRRR. This whole thing has got me wired today. It was just a bad day. Today is MTX day (I hate poking myself) and I am just plain cranky. I don't know what I should do, I've got doctor's pulling me this way and that. I just started seeing an ophthalmologist because my family doc wanted me to have my eyes looked at since she wasn't happy with them, and now he's jumping on the wagon too. So this is now 3 specialists (ENT, eye, rheumy) and my family doctor. Along with the mystery wegs doctor that I still haven't identified. I need to dig through my purse and find that paper.

Free healthcare is great, but sometimes I wonder if it comes at the cost of being a human lab rat.

I feel terrible today. My shoulders are achey and I am one grumpy girl. My face is huge. It feels foreign and my eyes feel squinty. On top of everything, I am going back to work next week. I can't hold off any longer, and I need to start making income again. If we didn't just spend a ton of money on our wedding I might have been able to stay off longer, but it needs to be done.. Wish me luck.

I am also tired, yet can't sleep. Buzzing, yet exhausted. It's a weird feeling. I don't know what to do with myself and I feel extremely agitated. I just wish I could either sleep it off or get some energy and do something. I'm like being pulled both ways. Blech.




Ohhhhh....I'm so sorry. I am sending you a great big soft Mama Bear hug. :hug3:

[Dirty Don]

RRRRRRRRRRRRRRRRRR. This whole thing has got me wired today. It was just a bad day. Today is MTX day

So this is now 3 specialists (ENT, eye, rheumy) and my family doctor. Along with the mystery wegs doctor that I still haven't identified. I need to dig through my purse and find that paper.

I am also tired, yet can't sleep. Buzzing, yet exhausted. It's a weird feeling. I don't know what to do with myself and I feel extremely agitated. I just wish I could either sleep it off or get some energy and do something. I'm like being pulled both ways. Blech.

Well understood kiddo, but, unfortunately, you will have to get used to it...WG is like that...extremely irritating at the best. As you get down the road, things WILL get better, honestly...took me about 8 months to get into a medical remission & start feeling fairly normal again (hmmm, normal?????)...I thought it'd never end...and it won't, but things are better. It's good that you're building a WGs team...try to keep track of them...and make sure they do talk with each other about you! The sleeplessness and irritation is also partly the drugs...they do that. Are you on pred too? That alone is irritating. Hang in there...it will be better then worse...it's a cycle...at least you're young and can fight this better than some. Best of luck to you on work too...that has to be hard...

[HopeinTN]

I can relate to everything you are saying and feeling. Look, I'm a tough girl and this really beat me down. The key for me was positive thoughts and reading stories on here about it getting better. It really does. I won't lie, I'm a mess, but this mess is above ground and breathing! Every situation you get in, find a silver lining. It will be hard and don't be afraid to ask for help. Just last week I developed shingles from the supressed immune system and if I had not gone to my dermatologist (thought it was a skin infection), she would not have seen a suspicious spot on my shin, which she biopsied and it's skin cancer- surgery Tuesday. That's my silver lining. Like I said, it's not always easy and when you get to that point, log on and say Hi. We'll be right here! Good luck sister!

[carriej22]

Thank you everyone. It really does make a difference to have people who have "been there" so to speak. Last night I slept a whole 6 hours straight through! Mind you, I was exhausted. Unfortunately I do not feel as refreshed as I thought I would if I got an actual nights sleep. Ohwell, I'll take it!

Im getting concerned for work now, it's going to be hard. I am thinking about giving myself 1 more week. Starting slowly. Bwho knew something I did everyday (work) would turn into such a difficult task? At this point I'm wondering how I'm going to make it home before I fall asleep! Even though I have trouble STAYING asleep, I doze constantly.

I have had a sore in my mouth now for a little over a week. Its a shallow hole about the size of the tip of a pencil eraser. I was told to watch for these... I think it's getting better but it's still sore. It's on the inside of my cheek by my molars. I can't get a good look at it because of where it is...

As far as staying positive goes, some days it's easy. I just seem so emotionally unstable (I cried the other day because I couldn't open a bottle of water?????) that I am all over the place. There really is no question that I won't get better... I KNOW I will get "better" and there's no other option in my head. I'm just concerned about quality of life, I was a busy girl. Obviously, at 22 I'm just getting started. There are many things I want to do (hobby farm, buy a bigger house in the country, have children, go on trips). I'm just concerned I won't be able to physically do these things. I don't feel like I'm getting stronger.

I'm already socially alienated from anyone my own age because of a typical 22 year olds lifestyle. I do not have the energy to keep up with my friends anymore. Luckily I've got good friends and they're here for me and come visit, but I'm not going to lie - I'm bummed about missing all the fun they're having. They also tip toe around me, because frankly this disease scares the living daylights out of them. Most of them get a cold and think they're dying. Their priorities and mine are so different now... It's not easy. This disease has affected every aspect of my life and I guess it's just going to take me some time to pull myself together.

[BrianR]

Hi Carrie.

I do not have WG, my wife does. She was diagnosed 2 years ago and in that time she (and me) have, like all others on this forum, gone through many ups and downs. Flares, trips to the hospital, 3 weeks in isolation due to chicken pox scare, long nights of insomnia, on and on. BUT...it does and will get much better than it is now. My only advice to you is the most simple, take one day at a time. You need to be vigilant about becoming involved in your treatment and you need to be prepared for whatever the next steps are in your treatment but try not to think too much about what may be in the future. Know that things will surely improve, just get there one baby step at a time and it will work out. Please also remember that your husband (congratulations!) is there for you.

Stay strong, vigilant and patient with yourself.

Brian

[annekat]

Carrie, I am about to turn 60 and it has gotten MUCH better for me in my year and three months of treatment. A year ago, I had gone back to working at my self-employment but was still feeling a lot of fatigue, was still on pretty high doses of the drugs, etc., so I took it slow, and like Brian says, one day at a time. I'm sure that will work for you, when you are sure you are ready. I'm now entering peak season for my craft for this year and feel a lot more able to handle it. I'm in SO much better shape than I was last year.

As for fun activities with friends, you WILL be able to do those! It's just a matter of time. I have most of the physical stamina I had before Wegs. I do have to pace myself a little as I get tired more easily. But it's mainly at the end of the day that I feel it. You are so much younger that you'll probably be back in the swing of things before you know it. And your friends need to get over their fear of what you have; I'm sure you've told them it's not contagious, and they need to understand that your current exhaustion and irritability will decrease as you get better and on lower doses of the meds.

As for the low quality of your sleep, I suspect your high pred dose has a lot to do with that, and I hope that is resolved as you keep tapering!

Hang in there!

[drz]

Thank you everyone. It really does make a difference to have people who have "been there" so to speak. Last night I slept a whole 6 hours straight through! Mind you, I was exhausted. Unfortunately I do not feel as refreshed as I thought I would if I got an actual nights sleep. Ohwell, I'll take it!

Im getting concerned for work now, it's going to be hard. I am thinking about giving myself 1 more week. Starting slowly. Bwho knew something I did everyday (work) would turn into such a difficult task? At this point I'm wondering how I'm going to make it home before I fall asleep! Even though I have trouble STAYING asleep, I doze constantly.

I have had a sore in my mouth now for a little over a week. Its a shallow hole about the size of the tip of a pencil eraser. I was told to watch for these... I think it's getting better but it's still sore. It's on the inside of my cheek by my molars. I can't get a good look at it because of where it is...

As far as staying positive goes, some days it's easy. I just seem so emotionally unstable (I cried the other day because I couldn't open a bottle of water?????) that I am all over the place. There really is no question that I won't get better... I KNOW I will get "better" and there's no other option in my head. I'm just concerned about quality of life, I was a busy girl. Obviously, at 22 I'm just getting started. There are many things I want to do (hobby farm, buy a bigger house in the country, have children, go on trips). I'm just concerned I won't be able to physically do these things. I don't feel like I'm getting stronger.

I'm already socially alienated from anyone my own age because of a typical 22 year olds lifestyle. I do not have the energy to keep up with my friends anymore. Luckily I've got good friends and they're here for me and come visit, but I'm not going to lie - I'm bummed about missing all the fun they're having. They also tip toe around me, because frankly this disease scares the living daylights out of them. Most of them get a cold and think they're dying. Their priorities and mine are so different now... It's not easy. This disease has affected every aspect of my life and I guess it's just going to take me some time to pull myself together.

All your concerns are real and valid, but generally if you survive the initial treatment, things do get better. There are many stories here of people who have recovered enough to go on to doing many things, like going back to college full time, regular job, riding in bike races, racing dogs in dog sled races, heavy physical work like construction work, climbing big mountains, and other things. Some of them are your age, some are younger, and many of us much older.

There are some things you do to help heal the mouth sores and that info is contained in several posts from our dental expert. There is also a previous, thread somewhere about words that helped us deal with the things you mentioned. Support from peers, friends, family, and forum members can be very helpful in getting through the tough times. Just try hang in there, take it day at a time, practice gratitude for what you can do, appreciate the friends and support you do receive, recognize that you are going through a life changing event which is stressful and real but some of the extreme negative feelings might also be due to effects of meds like prednisone which exaggerate your emotions. Counseling and psych help was beneficial or necessary for many of us in trying to make these adjustments. The Wegs roller coaster ride is unpredictable but remember that things generally do get better with proper treatment. It can take awhile and never seems to happen as quickly as we would like.

[Sangye]

I'm just catching up on posts.... Carrie, everything you're feeling is perfectly normal and sadly, quite common. SO much is due to the pred-- definitely the emotional lability, tearfulness, etc.... As you taper you'll see those effects decrease. It won't be too noticeable for awhile since you're on a slow taper from a very high dose, but it will come. It has helped me to remind myself (sometimes out loud!) that it's the pred talking.

I view staying positive as a general state of being, not as a state you have to be in during every moment-- that would be pretty neurotic! It helps to set goals for short-term, medium and long-term. Keep the bar low and attainable. Setting goals like this keeps your thoughts moving forward and gives you things to celebrate all the time. You need that with Wegs. The disease, side effects of the drugs and all the time and energy going into managing it all (dr visits, etc) can bring you down.

Have compassion for yourself. You deserve that.

[carriej22]

I'm doing better, sleeping better, not eating everything in sight.. LOL..

Still not back to working as much as I want, man it is tough. It's like a balancing act between all this crazy stuff!

I am trying to stay positive - I think I'm doing good with it. I mean some days I am more ticked off than a long tailed cat in a room full of rocking chairs but they seem to be getting further between. I've been getting back into my hobbies and spending some time just doing some me things. I went out for the first time yesterday and did some grocery shopping (I have either been getting Eric to do it - bad idea! Or running in and picking up this and that) and I just tried to enjoy the normalcy of it all. When was the last time I just went and puttered around the grocery store for an hour and filled my cart? I have no idea!

Today is Eric and I's one month of being married. I think I'm going to bake a cake ;)

[NicShaf]

Hi Carrie,
Happy one month to you and Eric! And welcome to the group.

I'm sorry if I repeat things others have said, I'm in the office right now and don't have time to read all 8 pages, I just skimmed.

I feel for you b/c I got sick right after my wedding, and I know how hard it is to imagine your future with this cloud now hanging over your head; although I can't imagine the stress of Wegs and a wedding, I had one then the other, you must be one tough cookie! :)

It sounds like you're treatments are going well, and that is wonderful. I think the most difficult part of Wegs for me was the beginning months; when I was on high dose of medications and felt weird and terrible. Things got better, as I'm sure they will for you as well.

Staying positive is great. It helped me in the beginning to hear that people recovered and lived normal lives, and much of that encouragement came from this site. It helped me see the light at the end of the tunnel.

Hope you continue to heal and feel better!