Did Rituxan NOT Work for You?

[txrepub4God]

I was diagnosed with Wegs in March 2015, spent 6 months on Cytoxan & prednisone, got sick & almost died in December from Cytoxan side effects, tried Imuran for 6 weeks in February this year but experienced horrid side effects (was taken off it), and finally started Rituxan infusions last month. I have my last infusion Friday (4th infusion). I didn't have any allergic reactions to Rituxan, but have been hit with exhaustion & flu-like symptoms for a few days after every infusion.

My concern is: I don't feel as though Rituxan is working for me either. I've been experiencing daily fevers this entire year, and they are still here even with Rituxan. I still feel as though I'm extremely worn out every day, I still have the "night" sweats several times a day, still have extreme food aversion/nausea/vomiting all the time, chronic pain, muscle spasms, just a total flu-like feeling all the time. I had blood drawn yesterday, so hopefully I'll get my results by Friday so I can see how the Rituxan has affected me.

I'm just curious if Rituxan failed to work for anyone here. If it doesn't work, we're down to just having Cellcept to try, as I can't take methotrexate because of Stage 4 kidney failure. I've heard Rituxan is THE miracle drug, so I'm praying it works, but just wondering if maybe it doesn't work for everyone. Thanks!

Teri

[me2]

I'm trying to remember my history with Rituxan but it goes back pretty far and I was extremely ill at the time. What I do remember is that it seemed to have zero benefit for me and I had to have more courses of it to finally see some results. I vaguely remember Dr Langford telling me my experience was not uncommon. I wish I had clearer memories of this to share but I thought my hazy version might be better than saying nothing. I think now Rituxan helps me. I know in the begginning I was very discouraged. I hope you get your upward direction soon.

[blu4runner]

I just finished 4 rituximab infusions for my flare. When I was first given the rituximab in 2013 it seemed to take several months to see the final result but it did work well for me. Praying you get better results as times passes

[Pete]

I was told that rituximab wouldn't take full effect until 4-6 weeks after last infusion. It took about three months until my labs were back to normal.

[Aneinu]

My son had two doses of rituximab at university hospital rainbow in Cleveland a week after he was diagnosed. It, together with prednisone, has kept the b cells and the inflammation away for the past nine months. Just in the past week or two, his inflammatory markers has risen to 300 (down from 1000 when he was admitted initially, but up from 20, where he has been holding steady).

Hope you feel better.

Sent from my SM-G920V using Tapatalk

[Gab122]

Teri - I hope and pray the retux works for you.
Its working for me, tho I did feel tired and a bit under the weather after both of my infusions. Because my O2 level was low they did a follow up ct and after only 4 weeks of pred and 2 infusion my granulomas were smaller. Maybe the symptoms you are experiencing are not disease activity but rather fighting off infections since your immune system is suppressed.

You are in my thoughts and prayers. [emoji1374]. Please update us with your results when you get them.

Your Weg/GPA sister
Gab

[Gab122]

Teri - I'm a NHRepub4God [emoji6]

[txrepub4God]

Gab122 - that is wonderful! Glad to know there are other women that have similar values in here that also understand life with Wegs. May God bless you greatly! 🙏🏻

[Green Grass & High Tides]

Hi Teri - Hang in there. It may be worthwhile. I was told Rituxan gains slowly and takes a few months to peak efficacy and then wanes. I did two infusions / two weeks apart and then again 6 months later. Rituxan did wipe out my b cells. But it's hard to say definitively if it did anything for wegeners or not. I didn't die. So, that's good and may be related to the Rituxan. Had my last infusion in Jan 28th of RTX and by April 28th I had another severe flare and had an infusion of Cytoxan that lasted 6 months. High dose prednisone was necessary despite having an Adverse Glucocorticoid Reaction initiated by pulse therapy of Solu Medrol (1 gram / day x 3 days).

I was very sick at the time of RTX and survival was iffy. So I tend to believe the RTX helped but it made me feel sick for a good 4 months. Like the flu. Given that another flare occurred as the RTX was wearing off, I think it probably was holding back wegs symptoms.

Once I regained movement of my leg, I walked most every day, which helped overall with the systemic flu like feeling and sickness. Light weights, stretching, meditation and strategic nutrition also helped. Hard to excercise when nausea and fatigue are bad but sometimes I can walk through that feeling. Sometimes I can't and end up in bed. Without zofran and kytril I couldn't manage the nausea, so those meds have allowed me to exercise. The systemic aspect of my disease and overall physical well being are closely related to exercise, nutrition, stress reduction, socializing and such...

Best wishes,
Tom

[txrepub4God]

Thanks to all for replying with your Rituxan experiences. I have been extremely ill since finishing my 4 IV infusions of the drug. It has been miserable. I had several days of very swollen lymph nodes in my neck & underarms, that made it hard for me to breathe when laying down. I saw my rheumy on Wednesday & she gave me a z-pack of antibiotics & ordered some lab work. I've had fevers every day, too.

This weekend I started having extreme sharp, stabbing pain in my upper left chest (underneath the collarbone), along with the fever still. By my symptoms alone, I believe it's pericarditis. I called my rheumy today & left a message, so I'm waiting to hear back from her. I can't get to the doc until Wednesday, as my honey has our car out of town until then.

I just don't feel Rituxan is going to work for me. Cytoxan only worked very briefly & then almost killed me. I'm just very tired - I've been fighting my health for years & I'm just exhausted.

[Green Grass & High Tides]

I've been fighting my health for years & I'm just exhausted.
2496
The other day on the phone somebody asked me how I feel. Irritated with a tailgater, instead of the usual patent answer I blurted, "Like a bird pooped on my birthday cake!" but then I realized at least I could drive and talk on the phone! Many days I can't drive. I'm sorry you are having such a hard time now, it's a marathon. Don't get discouraged. Keep the faith. Each breath is a good breath.

[Gab122]

Teri - I'm sorry it's been such an awful time for you! Sending you hugs and prayers! Please keep us updated!
💕🙏🏼
- Gab

[blm]

Teri -
Sorry for how you are feeling. I am new to the disease and this forum but from what I've seen here you have one thing you can depend on--you are not alone. And when you are fighting the fight we will work together to lift you up to meet the next challenge. Remember that this morning and every time you feel down. Reach out. Talk about it. And cut yourself some slack for having real human feelings.

Best -
Becky:hug1:

[Gab122]

Well said Becky!

[Gab122]

How's it going txrepub4God ? Is ritux still making you sick?
Have they texted crp or sed rate or ANCA score to see if you are improving? Just thought I'd check in.
God bless!
Gab

[Middlesista]

Terri - took a few months to see much difference although similar to Gab improvements in the lesions in my lungs were some of the first things that were noted

Question about the pericarditis - when you lean forward do not notice any change in your discomfort?

[Alysia]

Hang in there Teri. It takes time for rtx to work. Mtx didnt work for me. I vommitted like hell the imuran. I even tried plaquenil. Didnt work. Rtx started to work after 3 months, and only after second round (6 months later) and about 9-12 months since the first round, I got into remission. I was out of it once I got rtx in delay of 6 weeks.

[txrepub4God]

Thanks for checking in on me. I've been pretty ill since I began the Rituxan. I've had so many doctor visits - gastroenterologist, rheumy, primary care doc, urologist, infectious disease specialist, OB/GYN, cardiologist, and I'm going to see a neuromuscular specialist in a couple weeks. The Wegs has attacked a lot of my organ systems, and it doesn't seem like the Rituxan has done diddly squat for me so far. For most of this year, I've had a UTI that my doctors have not been able to get rid of, even after rounds and rounds of different antibiotics. The urine cultures have shown I have a colonization of E.coli in my urinary tract, so I'm going to get 10 days of an IV antibiotic, then the urologist will do a cystoscopy to check out my bladder. I've also had a flare-up of my gastroparesis, which has now caused severe food aversion (I'm only eating fruit juice popsicles, graham crackers, and rice - been this way for most of the year), nausea, vomiting, plus blood and mucus in my stool and massive constipation. I'm having a colonoscopy on November 4th. Also, my rheumy referred me to a neuromuscular specialist, as the Wegs has attacked my nervous system. My grip strength, tremors, control, and numbness have gotten worse in my left arm/hand, and has now started on the right side, too, plus numbness in my feet now. I know my rheumy has mentioned in the past that she is concerned about my nerves being attacked by Wegs, as it could possibly lead to paralysis. I'm also experiencing issues with my heart, and the cardiac ECHO I had done showed some heart damage and mild murmurs. Both my parents died of heart disease (plus smoking destroyed their lungs), so this does concern me.

Sheesh, it sounds like I'm complaining and whining a lot! I'm so sorry - it has just been overwhelming the past few months. I really had high hopes for the Rituxan. I'm still praying that it can kick my Wegs into remission, so we'll see. My last CRP wasn't positive, as it was up to 114.7 mg/L (the reference range showed that the highest "normal" number it should be is 4.9 mg/L, so mine is WAY over). For the time being, my PR3 in my ANCA panel was finally in the normal range for the first time in years (my C-ANCA and P-ANCA have always been normal except for 1 time my C-ANCA was positive), but because my symptoms are still so prevalent, my rheumy says I'm not in remission yet.

I just hold onto this: "Then he said to her, "Daughter, your faith has healed you. Go in peace." Luke 8:48


How's it going @txrepub4God (http://www.wegeners-granulomatosis.com/forum/member.php?u=7668) ? Is ritux still making you sick?
Have they texted crp or sed rate or ANCA score to see if you are improving? Just thought I'd check in.
God bless!
Gab

[Gab122]

My goodness. That's why too much trouble going on. I'm going to have to pray for you more. 🙏🏼💕
I don't think you sounded whining at all! On the contrary actually and you have plenty of cause to whine!
🙏🏼 Holy God, please bless my friend Teri. Please free her from these diseases and symptoms and side-effects, and bring her your healing and peace! 🙏🏼

~ Gab

[Alysia]

Sounds tough. I am sorry Teri. I hope that in time and after second round of rtx things will start to get better. are you on pred ? how much ? the lower pr3 can be a good sign. I also had countless UTI in my first year of rtx. tried many antibiotics. the UTI came back each time after I stopped the antibiotics. so I was on a maintenance half doze antibiotics for couple of months. it stopped it. I still get it from time to time but much less.
I love the verse you quoted. sending prayers ♡