Big sister trying to help with possible new diagnosis of GPA

[BigSister]

Here are the responses I gathered from the FB group - putting them here more for anyone that runs across this forum as I did looking for information!

These are the questions I asked and the various answers!

1. How long until she feels better? She has quite a bit of ear pain, facial pain, headaches, coughing. Will those subside quickly with the initial treatment?

• In my experience it took quite awhile for my pain levels to normalize due to nerve damage and the damage the disease did to my ears and sinuses.
• How quickly you feel better varies for everyone so it's really hard to say. I started feeling a bit better after my first round of infusions of Rituxan, and then developed new symptoms. I did a second round a year later and have been doing well since then. Everyone is different though, and my experience will not be the same as your sister's.
• it will take a week or so for the Rituxan to kick in

2. After the infusion can you drive? Can she drive herself to the treatments and home or should someone go with her?

• I do drive myself to infusions now but I wouldn't the first few times in case of reaction.
• I would not drive myself home after my infusions. They pre-medicate you with Benadryl and Tylenol and I am sleepy after my infusions because of the Benadryl. Also, reactions to the medication the first time are not uncommon. It's better to have someone go with you and drive you home if you have never had this medication before.
• Not supposed to drive after treatment. I think it is because they give you Benadryl with the treatment.
• (9 yr old) She is tired few days afterwards...but for the most part not bad
• I don't recommend driving after the first infusion. Where I go, I don't think they'll even give it to you unless you have someone with you.

3. Has anyone had more than one treatment a week? I think she misunderstood - she said 4x a week but I think it must be 1x for 4 weeks?

• I have done 1x for 4 weeks.
• Typically the Rituxan infusions are once a week X 4 weeks, or once a week for 2 weeks repeated in a month. Some people do 1 infusion every 3 months. My guess is that she misheard and it is 1X a week for 4 weeks.
• (9 yr old) Originally she got 4 weeks of infusions. After wards we have figured that if we do 2 weeks dosing...every 6 months...she has remained stable
• My Rituxan has been two doses two weeks apart (one dose, then another two weeks later) for a round. Rounds tend to be 6 or so months apart unless you're mostly in remission. The once a week for 4 weeks is also a protocol that is s commonly used, just not one I've had myself.

4. Will she feel sick after the infusion? Like immediately or a day later? How sick? What symptoms?

• I didn't have any side effects aside from being sleepy from premeds.
• I didn't feel sick after my infusions- I did have a reaction the first time and they had to slow down the infusion. I was tired for a couple of days so I scheduled my infusions for Fridays so I had the weekend to recover. I worked 40 hours in 4 days at my job Monday-Thursday and took Friday off for the infusions. I did develop severe headaches during my second round of infusions, but those subsided once I was done with the infusion set.
• The Benadryl knocks me the eff out. Every time LOL
• It makes me pretty tired for a couple of days generally, but nothing worse than that. I tend to have a day 4-5 days out where I feel flu-like (hit by a train) but I'm pretty sure that's the steroid leaving my system. It has helped so many people feel better, I hope it works as well for her.

5. How long is each infusion?

• They should do her first infusions pretty slowly so it can be an all day thing. I've been at the infusions center from 8am-2pm several times.
• The infusion time varies, but the first one will likely be scheduled for 6 hours because of the possibility for reactions. My last infusion took 2.5 hours total.
• (9 yr old) She usually takes about 4 -5 ours to run the Rituxan.
• The first one will be the slowest since they won't know if she reacts to it or not. (They typically give you Benadryl, a steroid, and Tylenol before the infusion to help counter that) I have gotten a tickle in my throat feeling (like when you're getting sick) and they've slowed it down and it went away, so they are able to continue.

[annekat]

Very interesting and fits with what I've read on here! Thanks for that. I may need it someday, so it's helpful. Hoping for the RTX'ers on here to chime in.

[kaysee]

Hi BigSister and welcome to the group. I've been on vacation for a while so have not been checking. I have had rituxan infusions and the info you have already posted seems about right. My infusions were once a week for four weeks. Then I had a second round 4 months later. The usual is a second round 6 months after the first, but I was having problems again so they did it sooner. My first infusion was the longest - about 5 hours. They go very slow on the first one because some people have allergic reactions. That is why they give benedryl, steroid and tylenol first. I felt a little faint the first time, but it passed. Some people get a headache, I did not. I felt fine after, but was tired. Tiredness comes with the disease. The rest of the infusions were less than 4 hours. She should do fine unless she has a reaction. They will slow it down or stop all together if that happens. The nurse that did my infusion said only one person he's done has ever had a reaction, so it is rare. She will see big improvement a week to two weeks after they start. Wishing you the best.

[PattyL]

Great information. I am waiting for insurance authorization for rituxan.. I learn so much from you guys. Thank you.

[lesa]

Hi BigSister. I had sent you a PM but in case you didn't receive here is the Rituxan co-pay card info. This is very helpful. Genentech will give you $10,000 a year for Rituxan infusions. Just give the card to the center or office where you are getting the infusion. The card can/should be renewed each year regardless if an infusions is needed or not. I always have it ready just in case.

Here is the link:
https://racopay.com/

If you didn't receive my PM regarding your questions just let me know. I can post or send again.

Best Wishes

[BigSister]

My sister finally has her first rituxan infusion scheduled for Aug 5th!

[annekat]

My sister finally has her first rituxan infusion scheduled for Aug 5th!

Glad to hear it!

[kaysee]

My sister finally has her first rituxan infusion scheduled for Aug 5th!

How did the first treatment go? Thinking of you and your sister.

[BigSister]

Thanks for asking, I meant to post an update earlier!

Her first treatment went really well - lots of nerves but it went completely smooth. Took about 5 hours, she didn't have any reactions so they ramped up per the standard schedule. She did get a bit queasy so I'd definitely recommend having a tummy full of solid food or snacks with you. Saltines and a 7-up fixed it almost instantly. No side-effects other than being very tired, which isn't uncommon for her anyways!

Her Rituxan dose was 825 mg
She received oral benadryl
She received solumedrol via IV (I think it was 100mg)
Started the Rituxan at 20 ml/hr
every half hour increased by 20 ml/hr if she wasn't having any reactions (which she didn't)
Max ml/hr was 161 but I think it ran out before she got that high.
Next time they start at 101 ml/hr.

She *finally* heard back from the rheumatologist she was referred to - she'll see him after her 3rd Rituxan, before the final dose. Better than never I suppose... :/

She also started to see a new ENT who seems to be phenomenal. He specializes in chronic situations so much better care for her. She's using an antibiotic in her saline rinse and also on a new round of cipro because they did grow bacteria with her latest swab/sample. She thinks that is really helping with her sinuses.

Anyways, thanks for the support - so very much appreciated! I'll definitely keep you posted!

[kaysee]

Glad to hear all went well.