Rituxin - and progress?

[Middlesista]

Wondering if folks could share some of their experience with their Rituxin treatments and progress. Are many folks able to live their lives when not in a flair? I know we have to be vigilant for symptoms but hard for me - being a new person around these parts to get a sense of any sort of normalcy for folks. I do understand we all have different symptoms but the more I read the more uncertain I am- and maybe that is the nature of this thing but I thought it would not hurt to ask folks here since everyone has been helpful and supportive

Just completed 4th infusion, am also on prednisone 40mg and Biaxin, folic acid, Vit D and a few other meds. My initial sx was vision loss, eye pain and sinus pain. Sinus biopsy was negative, they found typical GPA lung nodules but the lung biopsy was not adequate for results and I was told one of the nodules had shrunk.

I guess I am not sure what to,expect. Like everyone here I would love to hear the world remission and I know what a slippery slope that can be. I also know that I am fortunate to have started treatment withn a few days of diagnosis and my vision came back with high dose IV solumedrol

I do think GPA has been lurking in me for a long time where as I lost my hearing in one ear 2 years ago and have had elevated SR and CRP for over 10 years but nothing was figured out at that point. Kidneys are OK they told me nothing major and BUN and CREAT are fine

any insight or experiences appreciated.

[debra]

Hello, my sista in the middle.... Others will help u out I'm sure, as u know my deal... Just wanted to say, wegeners reminds me a lot of the game hide n seek? Remember this game? That's it! Just sharing this with ya..... Sista, u got this treated pretty fast, so I see good things for u..... Stay positive, and tell the weg dog daily, how you'll kick his ass! He hates this......... Deb.

[Middlesista]

Thanks Deb -

Hope you are gearing up for your appointments - we gotta fight this thing and make our life our priority! You can do it and you are so worth focusing on you. Just wish the medical systems/insurance did not make it all so difficult for the regular type folks. I bet Oprah would help - I am realizing we need to get info about this thing out there....

[debra]

Sista, I hear ya.... No,screw opra, don't be fooled by her.. she had me fooled as well... It's all for show, not from the heart.... My trust is in God, first and foremost. Then comes wherever he leads... Brings more neede peace and patience to deal with all the crap.... And there sure is a lot of that huh? My sista, u will have this in control in no time....... Deb.

[Pete]

For me, rtx was pretty easy. I had two infusions in October 2013 to knock down a flare. I was a little tired the day after, but otherwise uneventful. It took about six weeks for labs to return to normal. I continued to take 15 mg/ wk of mtx through these tx.

I had four infusions in August because the side effects of mtx were increasingly bothersome. I discontinued mtx the day before the first one, and I've been off it since. Labs continue normal. I'm able to do everything someone who's 69 going on 54 should be able to do.

[Middlesista]

Great to hear your progress Pete! Thank you for taking the time to share! I am 4 weeks out with Rituxin. If I had not had the vision issue I never would have known that anything was wrong with me acutely other than occ aches and pain so don't have a lot of what to look for other than vision. The lung nodules I had no symptoms from those but am dealing with the aftermath of that fool needle biopsy which has wrecked havoc with my lungs

69 going on 54 sounds good to me!

[Birdie]

any insight or experiences appreciated.

Hi Sis,

Speaking from my exp only, and not based on Rituxan... lung nodules go away fast, hearing loss/damage stops but doesn't improve or "heal", vascular issues go away almost immediately with high dose pred and they actually heal shortly thereafter, other tissue stops developing granuloma and existing granuloma is gone in the time it takes for normal cells in the same area to die and be replaced. Pred is the monster... 800 pound gorilla with side effects to match until the dose gets down to something manageable. Lots of swelling, eye damage, skewed perception both vision and thinking, 800 pound gorilla appetite... and I worked through it all for over three years, when not in the hospital... usually only took a couple days after hospital before returning to work... am I stupid or what?

[debra]

Birdie, no! NO,not stupid! CRAZY, yes, but no not stupid..... Deb. Xo

[Middlesista]

Thanks Birdie - helpful information and pleased to learn you were able to return to work once you left hospital. Don't think you are stupid - sometimes we work in order to keep our insurance and $ coming in to pay the bills. I am hoping to return to work next month - if it was not for the lung issue my RA said I would have probably already been back. I carry all the insurance for the family so that is a stimulus for me to get back on my feet and back to work.

Dealing with the prednisone - doing crazy things with my blood sugar and am working to keep this in check but using insulin in the short term - never been on insulin before and hopefully will stop using this once prednisone is able to be tapered down. I so watch what I eat right now due to the carb issue What dose of Prednisone did you notice a positive change?

When you say vascular issues what are you referring to - skin problems? Hearing - mine has been gone for over 2 years in the right hear so did not think that would come back but would love if I lost no more hearing so that is good to "hear"

[Birdie]

What dose of Prednisone did you notice a positive change?

When you say vascular issues what are you referring to

I was at 80 mg, more or less, for about a year. That dose was instantly an incredible "positive change". Had extreme difficulties reducing because I was full of infections which they didn't really look for. High dose pred masked the infections. Reducing it allowed the infections to pop up and cause confusion for the dorctors. They thought the issues when reducing pred were caused by the reduction, no thought that it was every part of my body being infected, every system with massive infections. Once the infections were noticed and taken care of (infectious disease doc camped in my room for about ten days), then I was able to reduce the pred with only normal reduction issues. So to answer your question, each 20 mg reduction was a giant step, giant improvement. Most of the pred side effects became manageable & tolerable at about 20 mg. It took several months to get there from 80. Sat at 20 for a couple months, then quickly dropped to 5 mg, in about three weeks. Stayed at 5 for two and a half years or so, reduced to 4 about two months ago. BTW, prednisone sucks.

My veins and any place with high blood flow, were generating massive amounts of granuloma. My hands were totally crippled, tissue in my mouth mostly gone, teeth ready to fall out, they were talking about pulling all my teeth and amputating half my jaw, massive swelling, legs had turned black, veins everywhere looked like they were giant black worms under my skin.

A few hours after the first dose of 80 mg pred, ALL the pain was gone, most of the swelling, etc... all gone. Within a couple weeks all the outward signs of that damage were gone and people started saying "but you don't LOOK sick?"