Karen just joined

[kaysee]

Hi, My name is Karen but I also go by kaysee. I just found your group and I am so thankful. I was diagnosed with GPA this past April after 2 years of being ill with some strange symptons. I retired in June because it was too difficult to work and I needed to take care of ME. I had rituxan infusions in June/July with good results but the GPA flared up again the end of August and my kidney doctor sent me to the hospital concerned that my kidneys would fail. My rhuematologist said rituxan can only be given every 4 months, so instead they gave me pulse steroid infusions. I had 125 mg steroid infusions for three days which did nothing. The kidney function kept getting worse. I then had 500 mg steroid infusions for 3 days. I have been back on 30 mg of prednisone every day since. I will begin my second round of rituxan on Monday. At diagnosis my kidney function was only 25%, but after the first round of rituxan it increased to 50% and I am hoping to maintain that.
This has been a very scary ride for me and I am quite frustrated as my doctor says rituxan works 90% of the time. I did not expect a flare up so soon, nor did my doctor. While in the hospital I had a water leak in my home which resulted in a complete re-pipe of my home. Now I am dealing with a lot of sheetrock repair. It is not a good thing having walls open to the attic (dust, bugs, mold, etc.) when I have a compromised immune system, allergies and asthma. I am trying to stay positive and have faith that this second rituxan treatment holds it at bay so that I can get off the predisone. I've been on this stuff since the end of April except for a two week break after the first rituxan series.

Thanks for having this group. Karen

[Allisonquast]

Welcome to the club so to speak. You'll find lots of assistance, knowledge and love on this blog!

[mrtmeo]

Hi Karen,
Welcome to the forum.
My mom is in a similar situation as you.
She finished her Rtx July 22 and was put on Imuran a couple weeks after, but it suppressed her bone marrow too much.
She has a bleeder and becomes anemic easy, so she is now, getting the Epogen shots to help, but her dr eventually, wants her back on Imuran at a lower dose.
Her kidney function started improving, but got worse with the anemia and took a while to come back again, so am waiting to see if it improves further.
I guess the Cytoxan works faster than Rituxan, so it does take 3-6 months from infusions for remission according to a study here
Long-term observation of patients with anti-neutrophil cytoplasmic antibody-associated vasculitis treated with rituximab (http://rheumatology.oxfordjournals.org/content/45/11/1432.full)

There are a couple Figures (1 and 2) on this study showing renal outcomes and flares.
The only thing is that they all had some cytoxan first.

I really wonder if the cytoxan should be used for flares after rituxan.

[vdub]

Must be something in the water -- two people signing in from Houston this week. TheMitchells are also from Houston.

Sounds like you are well down the road to understanding the disease. It can be a long, long road to getting some sort of remission and stability, so don't get too discouraged if things don't work out immediately.

A lot of people end up on some amount of pred for years. In my case, I was off pred for about 3 years and so thankful when they put me back on it. It has made all the difference in my quality of life. I'm only on 5mg, but that seems to do the trick.

[mishb]

Hi Karen and welcome to the forum.

Such knowledgeable people in here. I hope things get back under control for you after your need infusion

[gilders]

Hi Karen,
Welcome to the forum. I noticed your new member introduction last night and was going to reply. But it was 0130 UK time and I just had to switch off my Tablet and get some sleep. You'll find with members spread throughout the world someone is usually online at any time of day.
I'll reply to your "cramps" post now.

[Velma]

Hi Karen, I am a new member too. Hopefully we will both find answers and support to our questions and concerns. Lord knows this is a scary disease to deal with if ever there was one. Keep us up to date. Take care, Velma

[Psyborg]

Welcome to the forum. Sorry you need to be here!

[JeanMarie]

Welcome Kaysee! Glad you found us. Lots of good people here with lots of knowledge & experience & hopefully you will find the info & help you need. :rolleyes1:

[annekat]

Welcome, Karen. There are so many variations to this disease and differences in how people are treated for it, that it is hard for me to comment on any of that right now. Except to say that I'm sorry you have kidney involvement and that they are having trouble keeping your flares at bay. Also, your 2 years of strange symptoms before being dx'ed are not unusual. I'm glad they finally figured it out and that you will get it under control and even into remission. Many of us on here have not been declared in remission, and may have recurring flares that are not always serious and can be controlled with adjustments in meds., but are still doing quite well, feeling good a lot of the time, and able to go about our lives almost as before. I hope the same for you.

[Thinker]

Welcome Karen! My name is Karen also. I was just diagnosed in June and have been on oral Cytoxan, started at 150 mg, then decreased to 100mg as it was suppressing my bone marrow too much. I hope your kidney issues resolve. I have kidney involvement also, among other things, and I know how scary that is. My kidney function was not decreased at diagnosis, although I did have blood and protein cells in my urine, then two weeks later had to be admitted to the hospital as it had decreased by 50%. I also had the pulsed steroids but 1000 mg. My last two lab readings showed my kidney function was back in the normal range, although not as good as before diagnosis, so there is hope. I too am hoping to eventually get off the prednisone but now that I am down to 15 mg my doctor wants me to taper slowly so it may take awhile. I've had to learn to be very patient with this disease. I'm sorry to hear about your water leak. Right after I got out of the hospital, our sewer line backed up in our basement bathroom so I can definitely relate to the concerns about a compromised immune system and having problems in your house. There is a lot of good information in the current forums and also doing searches for different topics in past forums, and a very caring group of folks in this community.

[kaysee]

Thanks Hal. That was an excellent article about RTX results. My Dr started reducing my pred dosage after the first two infusions. We reduced by 5 mg every 7-10 days until I was off of it. I think I probably should have stayed on a low dosage of pred for a little longer. I see that many people stay on it for quite a long time. My kidney doctor made the comment that we stopped the pred too soon. I will talk to my rheumatologist about this next Monday when I have my second RTX infusion. I know he is concerned about being on the pred for so long, and so am I. My dad got diabetes from his frequent need for it to treat breathing issues, as did my uncle. My mother and 4 of her brothers had diabetes so I know I am at risk. That may be the reason he wants me off it. I will ask if there is another maintenance drug to try.

Thanks everyone for the welcome.
Karen

[annekat]

My mother got temporary diabetes from being on pred for awhile for breathing issues while recovering from pneumonia. In her case it was temporary and she no longer had to take insulin after getting off the pred. But I doubt that is true in every case. She wasn't even on the pred that long.. I can't say how long or at what dosages, but it was less than most of us with WG, I think. So far that hasn't been an issue for me, but I'm mindful of it and would like to get off the pred.