Newly Diagnosed

[Leeski]

My symptoms started in Aug 2019 with urticarial vasculitis and chondritis of the ear.
PCP ordered blood work and discovered I was ANCA positive. Referred me to MGH Vasculitis Center.

Last week, I was officially diagnosed with GPA with renal involvement. Started on prednisone taper.
First round of Rituxan scheduled for next week. Followed by a second round 2 weeks later.
Little scared about renal involvement as I only have 1 kidney. Donated spare to my sister 12 years ago.

The night I received my official diagnosis, I logged on to the internet and stumbled upon this amazing forum.
I've read so many of the members introductions and am very grateful to everyone for sharing their stories, advice and support.

I'm completely bewildered by this diagnosis and overwhelmed by what the future holds.

Thanks for reading,
Lisa

[andrew]

Hi Lisa
Welcome to the club :)

Renal involvement is a concern particularly when you have one kidney so I hope you have a WG-experienced renal doc? You're on the right treatment I hear great reports about Rituxan. It's something I haven't been on - yet anyway. Your post reads like you're in the right place for treatment too which is a great thing. Something in your favour is that you appear to have been diagnosed nice and early so that should count in your favour as there will be less damage to contend with.

Welcome again and feel free to ask any questions!

Cheers
Andrew

[Leeski]

Andrew,

Thank you for the warm welcome. But in the immortal words of Groucho Marx...
"I don't want to belong to any club that would accept me as one of its members."

All kidding aside, it's a privilege to become a member of such an amazing support group. Thank you for creating and maintaining this website. It's been a godsend. I've learned so much in a very short time. I'm comforted to know that I'll be in very good company on this long strange trip.

Wishing Good Health to all,
Lisa

[sshiveley]

I too am blown away by this diagnosis, but looking back, it all makes sense, dealing with this has been difficult. Flare ups continue, the fatigue is hard to deal with, but I am finally getting a grip on things, the anger is turning into "OK, I've got this" but some days I feel it will get the best of me. I am now also on Cellcept. 2 tabs twice a day along with still taking Prednisone. My next infusion of Retuximab is this coming Monday. Always hoping with each infusion, the damn disease will go back to it's hiding place
and not rear it's ugly little head again, hey, a girl's gotta hope, right?? Sherry

[Leeski]

Sherry,

Sending good wishes to you for your next treatment day. Hope this will be the one to kick WG into remission.
I'm happy to say that I had my first Rituxan infusion on 12/11 with no side effects. Yay! My second treatment is scheduled for 12/26.
I'm so thankful for the availability of this treatment and the continued testing and development for new drugs to fight this disease.

Wishing Good Health to all,
Lisa

[Don2000]

Hi there,
For those on rituxan, Are you getting it by IV, 2 weeks apart, every 6 months? Also, this is the first I'm seeing of cellcept as treatment. Was this prescribed because you continued to have flare ups?
(I had cytoxen for 3 months, didn't work, so had the rituxan 2 IVs in August, and tapered off prednisone, currently not taking anything since as I await rutoxin insurance approval I believe will be in February- 6 months following the August dose). I continue to have sore joints, painful feet once off prednisone. I had my appt with my doctor. She agreed that I'm not likely full remission but didn't want to reorder the prednisone and wanted me to just wait for the specialists' visit the end of January.
So I'm wondering about being on cellcept....
Thanks,
Donna

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[Pete]

Don2000

To answer your question. When I first got rituximab in 2014, I got four 500 mg doses a week apart once a year. For the past three years, I have gotten one 1000 mg dose annually.

I’ve never had cellcept. I was on cytoxan for 16 months. It worked well for me.

I wouldn’t be surprised if your specialist puts you back on prednisone. It will help keep the inflammation under control.

[Masha]

Hi Donna,
My doctor was part of the study and research on frequency and amount of Rituxan to be effective .
They found that large doses less frequently are just as effective as smaller more often. My previous doctor had me getting 500 mg. 4 consecutive weeks 3 times a year. My current doctor has me getting 1000 mg every six months. Attempting to get off prednisone has proven to be a disaster for me. Lower than 8 mg and my body rebels, sinus, eyes, mouth and of course the legs.
I also take Bactrim 3 times a week. That has proven to be a great help with sinus infections.
I have no experience with cellcept.
Masha

[Mnjet]

Hi Donna,
My doctor was part of the study and research on frequency and amount of Rituxan to be effective .
They found that large doses less frequently are just as effective as smaller more often. My previous doctor had me getting 500 mg. 4 consecutive weeks 3 times a year. My current doctor has me getting 1000 mg every six months. Attempting to get off prednisone has proven to be a disaster for me. Lower than 8 mg and my body rebels, sinus, eyes, mouth and of course the legs.
I also take Bactrim 3 times a week. That has proven to be a great help with sinus infections.
I have no experience with cellcept.
Masha



Hi Marsha
I was just diagnosed in May with wegeners of sinus. I started on prednisone, rituxan x2 in June. When my prednisone got down to 8 mg I had a flare. My prednisone went back to 10mg and just received another 2 doses of rituxan. I’m also on bactrim every other day, budesonide irrigation’s 2 x per day, prolia injections every 6 months. I see my Rheumatologist next week to discuss what’s next. I was hoping to get off prednisone but after reading so many others journeys I think I will be on it for more months.:sad:
ive tolerated rituxan infusion ok, just some fatigue.
Joan

[Leeski]

Hi All,

It's been 7 weeks since my dx. During this time, I've had 2 infusions of rituxan (1000mg). The last treatment was almost 3 weeks ago. Yesterday I met with my Dr to review blood work from last week. I'm happy to report that blood work and urinalysis tests are in normal range. Dr was concerned during dx about inflammation reaching kidney due to protein and blood in labs but tests have been normal since pred taper was started. I'll be meeting with nephrologist just to be proactive since I have 1 kidney and did have some early signs of kidney involvement.
CRP went from 93.9 down to 1.5
ESR went from 103 down to 11
ANCA activity measurement down from 2054 to 800

Going forward, I'll be tapering down to 5mg this week, checking blood work every 6 weeks, Dr appt @ 4 months in May to review health status, rituxan scheduled @ 6 months in June. And of course self monitoring for any symptoms that need to be addressed.

I've learned so much from reading posts in this forum that my Dr asked if I was in the medical field based on all of my questions and knowledge of GPA (most of which I've gleaned from reading posts). However, I didn't think to ask Dr about how to classify when I would be considered in 'remission'. I know that this is such a weird disease that can't be determined by 1 blood test or even a specific set of symptoms. ie...some people can be anca pos and be in remission while others can be anca neg with active disease. So, how would you classify 'remission'?

Wishing everyone a Happy, Healthy New Year,
Lisa

[Onirin]

I'm so happy to hear the rituxan is working for you. It did wonders for me. I had my first dose in the hospital. It takes about 4 weeks to kick in but when it does I felt amazing. I had my first flare up and sure enough rituxan made me feel great after 4 weeks. I'll be having my third infusion end of Feb.

I also had a kidney problem. They noticed a lot of protein and I kept going to the bathroom very 15 min. A kidney doctor said I basically wasnt able to absorb or keep anything, it was awful so I'm glad to hear thats better for you too.

Hang in there!