Hello from Hospital Bed, Day 11

[txrepub4God]

Howdy from Texas, ya'll. I haven't posted in awhile because I've felt deathly ill, and come to find out, I was getting pretty close! Today is Day 11 of my hospital stay - I had hemorrhagic cystitis from severe Cytoxin toxicity and had internal bleeding from the bladder. I've been transfused 6 times and was in ICU for the first 3 days. I will be finding a new rheumatologist because if I had continued to listen to my rheumy, I'd be dead right now. Even though she was having me get weekly CBCs because my cell counts kept dropping, she kept telling me that my numbers would come back up on their own, that we had stopped the Cytoxin & that should be enough. However, what she thought was a urinary tract infection was actually internal bleeding fron my bladder because the Cytoxin cooked it. I finally went to the ER on my own 2 weeks after stopping the Cytoxin & after my rheumy telling me 3 separate times I would be fine. The ER admitted me immediately & I was put into ICU that night because when they transfused me I almost bit the dust. I don't remember going from a regular room to ICU.

My next decision will be whether or not to even attempt to take Imuran, as I was done with my 6-month course of Cytoxin anyway & am supposed to start Imuran once my blood counts are normal again. I was told I would be on it a minimum of 2 years. I know Imuran isn't as strong as Cytoxin, but obviously my body doesn't handle chemo well. Will be getting a new rheumy & second opinion about this.

I do have to get my bladder scoped in an outpatient surgery in the next few weeks. The urologist wants to rule out that the chemo caused bladder cancer. Praying that all is fine in that area & it was just damaged by the chemo.

Praying for the best health for ya'll during the holiday season & beyond.

Teri in Texad

[Birdie]

I had hemorrhagic cystitis from severe Cytoxin toxicity and had internal bleeding from the bladder.

Teri,

Been there done that. It's no fun. It took me 1 1/2 years of cytoxin to get to your condition. I went to the ER 5 times before it was taken seriously, no kidding, 5 times and it was 4 different emergency rooms with my live-in nurse demanding they do something. Was admitted 3 times for 3 to 12 days each time. I lost 30 pounds I couldn't afford to loose.

Health care can be blind when you aren't bleeding on their floor and "you don't look sick".

It took about a year before there was no pain when urinating. I've had another year of no symptoms. Hope you recover faster than I did. When you go home you MUST HAVE HELP almost 24 hours a day for a while, maybe several months.

This should get your husband home from deployment. It's a very serious issue for about the next six months. Bust their chops and get him home to be with you and take care of you.

[renidrag]

Sorry for your troubles Teri, I had ten months of Cytoxan but did not have any side effects, funny though I could not tolerate Imuran. I hope it works for you and are so happy you are looking for another Rheumy. Best to you and your husband and your service.
Dale

[Pete]

Sorry to hear the bad news, Teri. I was on cytoxan for 16 months. Had some blood in the urine, but a cystoscopy showed no abnormalities (thankfully). Went from cytoxan to methotrexate (3 years) and now using rituximab for maintenance as needed. Immuran is hard on the liver. My doc didn't do the TMPT(?) test before giving it to me. I had a bad reaction coupled with pneumonia and a major flare that put me out of commission for six weeks or so. That got me started on a search for a doc who really knows wegs. I found one, and she leads my treatment.

As the guys have said above, make sure you get the household help you need. You've been through the wringer and will need some time and rest to regain your strength.

Good luck!!

[txrepub4God]

Birdie, I thought I remembered you mentioning in the past about your battle with cystitis. Who in the world knew a bladder could cause some of the most excruiating pain you could think of? I would just sit there & bawl my eyes out after I peed - I think shooting me would have hurt less than peeing with hemorrhagic cystitis. You just can't describe that kind of pain to anyone - it's indescribable. The searing pain when I pee isn't as bad as it was, but the urgency still really gets me. I've never wet myself until this cystitis crap - if I didn't get to the bathroom within 5-10 seconds there was bloody pee everywhere. It was like the movie "Bridesmaids" if you ever saw it, when the lady is in the middle of the street in a wedding dress, sinking down to the ground saying, "It's happening.....it's happening..."

My husband is still here, doesn't deploy until around April. I know he has to be deployed & doesn't have a choice. It's his base's turn to go, he's in a small 2-man shop & one of them has to go. The other guy is about to retire, so my husband is the only one left to deploy. :(. I have hope that I'll be able to count on my family if I need them.

[txrepub4God]

Pete, I had researched the Imuran, since I knew I was only going to be on Cytoxin 6 months. That's when I read about the TMPT genetic blood test. I'm the one that told my rheumy that we needed to run that test, as she never mentioned it. However, she probably was going to order it, but I happened to mention it first. I'm pretty proactive with my own healthcare. I really don't think my body is cut out for 2 years of chemo, I don't care how "weak" it is. Cytoxin almost just did me in within less than 6 months. Plus, Cytoxin didn't even really halt my WG - although my cANCA now shows negative (my pANCA has always been negative), my PR3s are still abnormally high & always have been. I never got anywhere close to remission. I'm probably going to ask for Rituxan instead.

[debra]

Teri,hi I'm Deb. Wow,just want to say I hope u get out of there and feel better! Yup the weg dog Realy sucks,big time!!!!! I hate him..... Best to u Teri..... Deb.

[Jaha]

Wow you have been thru enough, already. I am glad you are going to get a new Rheumy, hopefully a Wegs specialist. I hope you get home soon and get the best care possible. I took Imuran for several months, it did not work for me, but neither did the Cytoxan. I am on Rituxan now and it seems to be keeping things under control. I am wishing you all the best with what ever your next step is. Please keep us in the loop and take care of your self.

[annekat]

Teri, I'm so sorry to hear all this. Yes, you need a new rheumy, the old one is making statements and choices based on not enough knowledge, it seems. And it sounds like you are a candidate for RTX. Best of luck and hope you are out of there soon. What an ordeal, and sorry you had to go through it.

[Birdie]

Birdie, I thought I remembered you mentioning in the past about your battle with cystitis. Who in the world knew a bladder could cause some of the most excruiating pain you could think of?

Who would know? You and me, certainly not anyone who's never been thru it. NOTHING else is like that. I get it. Let me give you what I wish I had been told up front.

First, since it's what's going on right now. The pain is called refered pain, meaning that where it hurts is not where the hurt is. The hurt/damage/injury is in your bladder rather than where it hurts. The bladder doesn't have the ability to cause pain directly. That means... be very gentle around your abdomin/bladder area. Pressing on it or bumping it can break things loose. Be gentle with all your movements.

I spent a long time being flushed thru the catheter, about a half gallon every few hours. What drained out was black. I really wish they had done far more of that for a much longer time. Without the catheter all those blood clots have to come out the usual way. Sometimes ten in one ounce of urine. Big block homes and the neighbors still heard me screaming in bathroom, every 15 to 30 minutes 24 hours a day. It took a week of that at home before the blood clots stopped being big. The hurt goes down as the size of the clots goes down. So.... don't let them get in a hurry sending you home. Catheter sucks but it's far better than the other option.

Once the catherter was out they dramatically increased the IV fluids. Still trying to flush my bladder. I drank a lot of water also. Peeing constantly to relieve the pain, but only an ounce at a time. If you can find a shortcut to this process then I don't know what it would be. It takes time to heal a bladder.

Of all the issues discussed here, this one has my sympathy more than everything else combined.

Hang in there, I'd get you picture of kitten hanging by it's toes but you're a dog person. :)

[Debbie C]

Wow Teri, so sorry this is happening to you. I'm glad you decided to go to the er and to stop listening to that rheumy. I had to laugh though when you mentioned the part in the " Bridesmaid" movie,that was funny but I know what you are going through isn't. I hope you are able to get out of the hosp. soon and enjoy the holidays.
I am like you,I seemed to have some sort of reaction to all the chemo drugs ( or I just didn't like the side effects and didn't give them a chance ) but anyway that's why I am only taking pred. Sometimes less is more !!
I will say a pray that you are home soon with your family..keep us posted

[drz]

Sorry to hear about the problems but glad you are now getting some better care. CTX can be hard on our bladders. I remember the bladder cramps from frequent infections and having to wear a catheter for several weeks too from problems caused by CTX. Just hope it helped knock down the Wegs and that you scoping looks OK. I also went to Azathioprine afterward and it has worked well for me after the CTX knocked the Wegs down. Best wishes for quick progress and recovery to healthier state.

[woz]

You certainly have been in the wars of late, hope the road to recovery is quick, I started on CTX 6 months, and have been on AZA for almost 20 months, don't know how long I will be taking it for, haven't had a problem with it, but everybody is different, there are a few other drugs they could put you on, but your rheumy should know them. I would be seeking a second opinion, concerning your medical situation, you need doctors that have your best interests as priority.

All the best.

Regards Woz...

[Middlesista]

Teri - geez, so much to deal with and to have a doc that is not on the same page. Hope things are improving and sending positive healing light your way

[MikeG-2012]

Keep on fighting Teri! I'm also glad you're ditching your rheumy! Good for you! Too bad many others don't do that when they get a bad doc...

[little sister]

I know every case of Wegener's is different but... I had a course of 4 weekly infusions of Rituxamab in July 2015 and was in remission as of Dec. 2015. (I started high dose Prednisone in early May as soon as I was diagnosed and I also stayed on that until December 2015. Then slowly weaned off.) I am on Methotrexate tabs once a week for maintenance and if I'm still in remission in December 2016 we may talk about reducing the Methotrexate. I have probably been so much luckier than many others. Part of my luck includes living close to Johns Hopkins vasculitis clinic where the treatment for Wegener's is absolutely incredible. Anyway, my purpose in writing is to say that the Rituxamab specifically targets Wegener's with fewer side effects so if you are a candidate for it then go for it!