Flare up and Rituximab route questions

[shankxonline]

Hey All

Last week I got flare up of my GPA which was quiet for 6 months. This time kidney function was down (80-> 50) in a month, all inflammatory GPA markers were up and dr are very certain that this is GPA related. I have been recommended a kidney biopsy (since no organ was involved before) and pushed on Prednisone 60 mg.

Rheumi likely to recommend Rituximab (?) post the biopsy results.

Moving from Methotrexate (25mg) to Rituximab infusion is a bit un-nerving. First time having an infusion also doesn't help in calming the nerves :)



Can folks share their experiences with starting Rituximab infusion and how effective it has been after?
What all changes in food or lifestyle should i expect to be made once on Rituximab?


As always, thank you for being there to listen and share! :hug3:

[Pete]

Can folks share their experiences with starting Rituximab infusion and how effective it has been after?
What all changes in food or lifestyle should i expect to be made




My rtx infusions have been non events. The first one lasted about five hours and the rest around four. In addition to rtx, you will get a drug cocktail of solumedrol (steroid), benadryl, and tylenol to minimize any possible allergic reaction. I generally don’t sleep well the night of the infusion, and I’m a little tired the next day. After that, I’m back to normal.

As far as diet and lifestyle changes because of rtx, you probably won’t need to make any. I lead a lifestyle that is pretty much what I did pre-wegs. Ask your doc for recommendations.

Hope all goes well.

[DStaelens]

My experience is like Petes, first one took me 7 hours because my ears would start itching, they got quicker after each one. The ones at 6 months were a non-event, other than I can't sleep at all for a night. Otherwise, I'm pretty much to doing all the things I did before this hit me. Feeling better than I've had in several years. Didn't realize how bad I felt until I started feeling normal again.

[jmq]

I had Rituximab for about 2.5 years (every 6 months). After 2.5 year4s, my labs looked so good the dr suggested we skip an infusion to see if I was in remission.
I stayed in remission so we stopped the infusions and I remained in remission without drugs until now.
I seem to be having a flareup according to my rheumy but this time is affecting my ears (so far). It started about a month after I had COVID so it's possible COVID woke up my GPA.
My rheumy has already ordered a Rituximab infusion for me so I'll probably start within the next couple of weeks.
It's a bit scary but once you get past the first one, it's a piece of cake. I only had a bad reaction to the first dose. My throat started closing up and they had to give me a shot of benadryl. After that, they re-started the drip but slowed it down and I was able to tolerate it. The second time, I did not have any reaction so my body got used to it. After that, the only side effect was tiredness.
Don't be scared of the infusion. I think it's the best of the options. only twice a year and you don't have to take any other maintenance drugs, not even prednisone in my case. Rituxin put me in remission pretty quickly.
I have not changed anything about the food I eat or lifestyle after Rituximab. But I was always a healthy eater.
Feel free to reach out if you have any other questions.

[Peter Marsham]

The worst part of Rituximab for me was manhandling the bag hanger into the toilet. Apart from that, it’s just a log boring day. I’ve never heard of anyone having any adverse reaction, though it’s always a vague possibility.

EDIT: just read jmq’s post above, it’s the first I’ve heard of that sort of reaction. Apart from that, no time off work, no nausea, normal appetite and sleep. I drove myself in and drove home again at the end of the day. Just make sure you take a good book or iPad, or some paperwork you need to catch up on.

[shankxonline]

Thank you, all for sharing your first Rituxan experience. It always very scary to go in for an "infusion" treatment...

Finally I got my kidney biopsy done and confirmed with GPA. A result confirming things always help, I guess, rather than shooting in the dark with pretty potent meds that they plan to inject. Rituxan weekly for 4 weeks seems to be first plan of action my Rheumy if putting together + Prednisone 60 mg.

Keep me in your prayers :)

[Susan B]

Perhaps you have already started treatment by now, but in case this helps...

Per the protocol at my hospital, the infusion is started very slowly and the rate is incrementally increased as long as you don’t experience significant side effects. I assume this is the standard everywhere. Just let whoever is administering the medication know of any concerning symptoms.

I have never felt any different either during or after the infusion. Hope you experience an easy time like many of the rest of us!

[shankxonline]

Starting Ruxience from Tuesday March 2. 800mg x 4 weeks as induction treatment and TBD thereafter.

Fingers crossed and hoping for a better result on the other side of this :)

[richard052018]

I know it is scary to think that you are having infusion therapy but the clinical trials and a decade of field usage show that this drug works. It worked for me. May 2021 will be 3 years for me. I haven't skipped a 6 month infusion yet but it keeps my labs in order. According to others with experience around here, your kidney numbers should get better with the prompt treatment.

Let this be a warning call to everyone with GPA to perform regular home urine dipstick tests to look for blood or protein in the urine, which is usually found before any rise in serum creatinine.

From Cleveland Clinic: https://my.clevelandclinic.org/health/diagnostics/10971-using-urine-dipsticks-to-detect-granulomatosis-with-polyangiitis-formerly-wegeners

Blessings to you!! You will get through this.

[John S]

I am a very satisfied Rituximab patient. At first, I got two infusions of 1000 units each, two weeks apart. Repeated in six months.
Then it was reduced to one infusion. Repeated in six months.
The last two infusions were 500 units at six month intervals.

I do believe that it is keeping me alive.

[shankxonline]

Just completed 800 mg first infusion of Ruxience. Turned out to be non-eventful (so far) and am able to walk back home. Palpitations were higher - but no reaction during the infusion process. Solumderol, Tylenol and Bendryl were given as pre-meds.

Now hoping the B-cells curb down helps control GPA and kidneys while still keeping me away from acquiring new infections.

Self-isolation, regular follow ups and strict low sugar diet along with active workouts is the plan for next few months as my body adjusts to this new normal :)

[smileyurbs]

Hi there,
I have been on Rituximab since I was diagnosed almost 4 years ago. Like most have posted the first one was longer then the rest. My infusion in the beginning is like yours 800mg X4 weeks every 6 months. For the past year and a half I have been doing one 500mg every 6 months. So far so good with that. My life for the most part has been somewhat back to normal, the biggest exception is my medicine regimen. I have suffered severe neuropathy in my left leg which has actually gotten a lot better which is making it easier for me to walk more. I definitely attribute my health getting better due to the Rituximab. I hope you found your infusions went fine.

Best,
Sandy :biggrin1:

[shankxonline]

Hi smileyurbs (https://www.wegeners-granulomatosis.com/forum/threads/6134-Flare-up-and-Rituximab-route-questions/members/9949-smileyurbs)

Yes - completed all 4 first infusions and went well. The numbers will show improvement over time I am told - but I am feeling good so far. Tapering on Prednisone every 2 weeks.

[Lea]

Pete, what made you go from methotrexate to rtx? This is my second year with gpa, and I am not taking Prednisone anymore (started with 60 mg). I am still taking methotrexate (calcium, vitamin d, folic acid, vitamin b12, budesinone nose rinsings), and all my labs are OK, everything is in the normal ranges, and my rheumatologist said I was in remission. My main problems is that I get tired easily, and I sleep more than normal. I asked my rheumy about rtx but he said that probably that would be too aggressive, and that methotrexate was lower in aggressiveness for the body. I am also still having problems with my ears. Presently I use hearing aids to teach and I can hear well without them, but I think that without prednisone i may have more problems with my ears, and I was wondering if rtx would help more my ears and my tiredness.

[Pete]

Lea

I went to rtx from mtx because I was having too much fatigue from mtx. I was on both for a year, but my doctor decided I only needed rtx going forward.

[John S]

I believe that the answer for me does not rely on choosing the correct medication. Instead it has relied on choosing the best doctor to treat me. I chose Dr Villa Forte because she is a rheumatologist that has specialized in GPA for her entire career. I take what she tells me to take, I do what she tells me to do. So far, the results have been very good.