First Time On Rituximab!

[Chadwyck]

I'm happy to announce that tomorrow will be my infusion day for Rituximab after hearing about it from 2011, begging for it in 2014 until now! Unfortunately the disease is hungry again and it started eating me. This would have happened last year and the year before but because we were still in an active pandemic it was too risky. Well, GPA/Wegener's was hibernating for the longest time and as it started on me again a brand new symptom I've never had started...hearing problems in the left ear. I've heard about that before with the disease but never experienced it. My cough is back in full swing. The kidneys are at 100% function but some markers for the kidneys jumped from the mid 20's to 63 in just one month. I know it should be less than 2 and it has not been under 10 in 12 years, maybe more. My question for those of you that have already had it is, are there any preparations I need to do like I did with cyclophosphmide?? Drink lots of water to avoid bladder problems was what I remember, but I have to remind myself this is target therapy and not chemotherapy. I've had 4 bottles so far, just to be on the safe side. I want to stay hydrated. I'm still ANCA negative surprisingly with all of what's been happening this week.

Onto a much bigger concern... I've had intermittent water leaks in my ceiling over the years. The maintenane guys found mould in my bedroom closet and linen closet! They are aware of my medical condition so I've put a major urgency to fix it. So because of that, I'll be staying with family for a while after treatment. I'm scared to come home to water damage, wet carpet and holes in my walls that triggered this by thunderstorms.

I'm not too worried about tomorrow, possibly Tuesday if it gets delayed like they told me...but are there other concerns I should take into consideration besides stay hydrated? I have said to a few friends last week, I wish I could sue Vasculitis for all the damages it has done to my multi million dollar body! :tongue1::tongue1::tongue1:

[Pete]

Chadwyck

Other than staying hydrated, no medical prep is needed. The first infusion will last 4-5 hours. Immediately prior, you’ll get doses of steroid, benadryl, and Tylenol. This is to prevent an allergic reaction. If you should experience a metallic taste, itching, hives, etc., let the nurse know. They will take appropriate action.

For me, the 15+ infusions I’ve had have been nonevents. I have been driving from Columbus to Cleveland for infusions (a bit over two hours one way) and driving home immediately after. I’m a little restless that night, but back to normal the next.

Good luck!!

[Long Time]

My partner is approaching 28 years (diagnosed) and was treated with Rituximab for the first time this year; four infusions so far. He receives infusions at his rheumatologist's office (single doctor office). Partner experienced foot-hand syndrome during treatment two which affected his hands only. The doctor had no experience of this happening to another patient.

Unfortunately, there was no support for this from the doctor or staff regarding the foot-hand syndrome. 28 years of treatment has left partner with sensitive skin and I have my own sensitivities so we have sensitive skin products on hand. Skin tested knuckle by knuckle to find something that would soothe. And for treatments 3 and 4 partner used diy cooling mitts contrived from soft sided insulated lunch boxes.

A 'foot-hand' search of the forum yielded no results so, presumably, no one else has reported on this here. Hopefully it won't happen to others. But, if it does, please think about preventative measures for future treatments.

It took several weeks for partner's hands to calm and heal. I don't know forum policies on product names so won't list the hand soap and topical that he was able to use. But, imagine it might be okay to post that a cool organic chamomile tea (hand) bath 3-4 times a day helped. Nothing added organic chamomile tea hot brewed with distilled water. Then chilled in the refrigerator. Presuming his hands might leach toxins the tea was discarded after each session with a fresh batch used for the next.

Most recent labs drawn this week so will know more soon. For now, anticipating two rounds in November.

Going to peruse the forum to see what folks are posting on vaccinations when being treated with Rituximab.

Air conditioning is going most of the year here so partner wore a fleece vest and took a light throw (small blanket). I'd always gone with him before when infusions (previous other treatments) were in hospital infusion centers. There is no accommodation for that in the doctor's office so I had to drop him off and wave goodbye. Unfortunate as I would have noticed his hand problem as it was occurring and might have been able to lessen the damage with some quick hustling. It was noticeable when he exited the building to walk to my vehicle. Space or not, I think I'll stop by for a midpoint check the next time.

Throughout the four infusions, partner reports it was not nearly as harsh as what he experienced before with other protocols. As a witness, I wholeheartedly agree. Hope you tolerate it well and that it produces excellent results.

[Chadwyck]

Oh wow! I hope he's doing better. I'm still new to this drug. I've been researching it ever since it was first approved here in Canada back in 2011. As soon as I finished my last treatment of Cyclophosphamide I went into remission. Then a month later Rituximab was approved... figures, just my luck! I've heard about skin conditions as a reaction to it and that made me nervous. Apparently, GPA/Wegener's does that to some people and it would be hard to know if it's the disease or the treatment. I've never had that problem with the disease so I'm guessing it would be Rituximab that would cause any of that. I've never known anybody to get treated directly by their Rheumatologist so that's all new to me. How's he doing now? I woke up this morning with the expectation of severe side effects. All I have is proof of where the needle was and felt perfectly fine. I guess it's different for everybody. I purposely avoided the 4th Covid shot over the past year so that it wouldn't affect my treatment. After 6 months, I might get it. I have no idea if this is once every 6 months or once a year, it's too soon to know. I'm only 12 hours into it. :)

[Long Time]

Thank you. For my husband, the Rituximab side effects, aside from the foot-hand syndrome were eerily mild compared to what he had previously endured. The massive increase in Medrol just before the April series of 4 infusions caused more discomfort than the infusions (aside from the foot-hand syndrome.

The rheumatologist did labs a week prematurely (I think); results were very good, perhaps even excellent, but not spectacular. He repeated the labs two weeks after that and they held steady. He then called urging an appointment with an aim, we found out, of starting Tavneos.

There is probably a better thread for going into this but my husband went through a very rugged time when both his rheumatologist and his nephrologist retired at the same time and with very little notice. He hadn't had much time with that nephrologist after his excellent long time nephrologist had also retired but at least the most recent nephr retiree did no harm. The first nephr replacement team took it upon themselves to change everything and catapult husband into an alarming decline. This occurred during that long wait for a first appointment with the replacement rheumatologist.

A new nephrologist has been found; he's brilliant, steady and practical. He respects what we have learned over the past 28 years and sees husband as a person. Husband was due to see the nephr the same week that the rheum wanted him to come in to discuss Tavneos. For our own reasons we felt the Tavneos suggestion was premature and wanted to wait for the Rituximab to have an opportunity to maximize its effect.

The recounting is a little out of sequence as Tavneos had not been mentioned before the Tuesday that husband saw the nephrologist. The nephr said he was not alarmed by the nephrology portion of the lab results that the rheum had flagged and suggested we give the Rituximab longer to work. The nephr scheduled testing accordingly.

The rheum had wanted to see husband Monday of that week and we suggested that he see nephr first, as previously scheduled, and then see rheum on Wednesday. It was on that Wednesday that the rheum put forth his recommendation for Tavneos.

Husband and I explained our reluctance to quickly jump into Tavneos. Rheum agreed to wait for results of yet more labs in another two weeks.

Labs were taken 5 and 7 weeks after Ritux. Rheum wanted the next repeat at 9 weeks. Absolutely not recommending this to others but husband and I determined to stretch that time out a bit. Labs at weeks 5 and 7 were near identical; the next labs that were delayed beyond 9 weeks had improved enough that the Tavneos discussion was dropped.

Husband is scheduled to see nephr next week, we will then schedule with the rheum. Currently he is due for next Ritux in November.

Husband was diagnosed in Pennsylvania. The rheumatologist there was his lead and readily consulted with his other docs and with the teaching universities. We have been in our current location for over twenty years. The rheums here simply do not act as team leaders or members. We have to self advocate beyond what might be typical or, to a certain extend, recommended.

How is he doing? ....... Perusing the forum after a long absence I see that some on Ritux are taking Bactrim. The current rheum won't even prescribe antibiotics for dental visits. After explaining the history of events to the nephr, he takes care of that. Hubs had a cataract surgery five weeks ago and subsequently ran a fever that started two days after and escalated. The rheum's stance is for husband to go to ER with a fever over 99. Rheum returned the call about the post op fever but would not see husband (short office hours on Friday) and recommended the ER.

Covid has been very active here. When I got hubs in to see primary on Monday morning (with very close monitoring over the weekend) he agreed that the ER would not have been a good choice for hubs. He tested him and prescribed a Z pack. Fever cleared, no other symptoms, cataract surgery a resounding success.

Hubs had second cataract surgery on Wednesday. We had asked the surgeon about antibiotics (as with dental work); he didn't connect the dots and refused. I considered just having hubs take antibiotics and/or calling nephr for his thoughts - and didn't. Surgery on Wednesday and fever by early Friday evening along with extreme fatigue and the same appearance as last time. Contacted primary's after hours nurse practitioner, explained the sequence of events and the need, she checked the primary's notes and agreed to call in a prescription for a Z pack. Fabulous pharmacy received and filled the prescription within thirty minutes of closing.

Hubs is already feeling better with a normal temperature right now. Fast action looks like it will nip it in the bud. And the eye is doing well. The whole eye surgery experience has left us more frustrated with local rheumatology approach and underlined the need to consult out of the area. There is nothing wrong with the rheum, he is simply typical for this area in not comprehending or accepting the need for a whole patient approach.

The cataract surgeries were a surprise and delayed our summer plans. All will look better when we finally meander to the shore for a late season vacation.

[CapeKay]

Thanks for sharing all that. I get frustrated, and scared, when I encounter a lack of understanding the seriousness of this disease. My own account of what my body is experiencing is often ignored. It is a horrible feeling and I do not respond well. Rather than try harder to advocate for myself, I tend to feel humiliated. I was treated for GCA beginning back in 2011. My docs were at MIT for 20 years and they were all terrific. I always felt that what I had to tell them mattered most. They listened and treatment was informed by that. I recently read in notes I found on my patient portal that "maybe we should be looking at heart failure". Rheumy never mentioned this to me. So, I just took it upon myself to make an appointment with a cardiologist. I did get a referral from my PCP.

[Chadwyck]

Ok, it has been exactly 16 days since my Rituximab infusion. What a difference! Every single problem I've complained about in the last 6 months are totally gone. What happened before the infusion is the original symptoms from day one started coming back... eg: kidney problems, and the sudden harsh coughing. By the time the first week was over, even that was gone. The one thing I stopped complaining about was the visual disturbance. I was told many times that this can happen with aging. I was 37 when it all started and over the years I noticed I couldn't read menus in restaurants anymore; especially with dimmed lights. I always had to use the flashlight built into my iPhone to read things. Lately I've been using reading glasses to read E-Mails and they do help. Now that Rituximab has been done and over with, all of a sudden, everything I look at with the naked eye is crystal clear and sharper! I thought aging was the problem?? Nope, it looks like the inflammation was still in and around the eyes all along. I just got used to the fact that I couldn't see like I used to. As I'm typing this with the glasses off, I have no problems at all. Yay!!!

Thank you everybody for your support in this. I wasn't scared of the infusion, just so many people's concerns asking me about the side effects and the safety of the medication, they forgot why I was getting it. <grin> I was totally focused on getting rid of symptoms only and it worked. But my favorite part is the eye sight, after I gave up on it years ago, I can see again just like I did prior to Vasculitis.

[CapeKay]

Wow. That is a great story Chadwyck. I will soon have a second round of Rituximab infusions. I thought I had some initial improvement but right now my symptoms are as bad as they have ever been. I am hoping that maybe that will change with the second round, but most of the information I have come upon appears to say that most see improvement rather quickly. Maybe it is not the drug for me. I am sure happy you had such results.

Kathy