rituximab infusion for rare lung disease

Posted by teammayo1 @teammayo1, Jun 27 7:14pm

Hello, has anyone had a rituximab infusion, and if so can you tell me about your experience at the infusion center at the Mayo, I am going to Arizona. Thank you

@teammayo1 Having a rare lung disease I’m sure is creating a great deal of anxiety. I’m so sorry as I know how unnerving all of this can be when facing unfamiliar treatments.
One thing I know for sure, your experience at the infusion center at a Mayo Campus will put your mind at ease.

I’m a frequent flyer at Mayo Rochester with daily visits to the infusion center there for months.
The RN’s who administer the infusions, and the supporting staff in the units are so patient, calmly reassuring and take the best possible care of you!

In Rochester, you have your own small room with a comfy bed for privacy. I have seen other areas where there are really nice recliners, also with curtains around for privacy.
Nurses and staff are abundant, knowledgeable and compassionate.
Bathrooms are numerous.
A volunteer with a cart filled with goodies comes around and also offered hand massages!

I’ve also had numerous Rituximab infusions which worked wonders for me, by the way. The infusions will take 1-1.5 hours depending on how fast the flow rate is regulated. Initially it will be slower. Then subsequent sessions the solution can be administered faster.

Bring a book, ipad, snacks, water, etc.. There are also TVs in each bay.
If I haven’t covered it, what specifically would you like to know about the infusion center at Mayo?

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@loribmt

@teammayo1 Having a rare lung disease I’m sure is creating a great deal of anxiety. I’m so sorry as I know how unnerving all of this can be when facing unfamiliar treatments.
One thing I know for sure, your experience at the infusion center at a Mayo Campus will put your mind at ease.

I’m a frequent flyer at Mayo Rochester with daily visits to the infusion center there for months.
The RN’s who administer the infusions, and the supporting staff in the units are so patient, calmly reassuring and take the best possible care of you!

In Rochester, you have your own small room with a comfy bed for privacy. I have seen other areas where there are really nice recliners, also with curtains around for privacy.
Nurses and staff are abundant, knowledgeable and compassionate.
Bathrooms are numerous.
A volunteer with a cart filled with goodies comes around and also offered hand massages!

I’ve also had numerous Rituximab infusions which worked wonders for me, by the way. The infusions will take 1-1.5 hours depending on how fast the flow rate is regulated. Initially it will be slower. Then subsequent sessions the solution can be administered faster.

Bring a book, ipad, snacks, water, etc.. There are also TVs in each bay.
If I haven’t covered it, what specifically would you like to know about the infusion center at Mayo?

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Oh my you are wonderful I am so hesitant with this new treatment plan but have total confidence in my medical team. I was told this is going to be a 8 hour infusion and hearing from you has help to put me at ease a bit. Thank you for reaching out and being positive.

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@teammayo1

Oh my you are wonderful I am so hesitant with this new treatment plan but have total confidence in my medical team. I was told this is going to be a 8 hour infusion and hearing from you has help to put me at ease a bit. Thank you for reaching out and being positive.

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You’re most welcome. My longest infusion time, for a different treatment, was 6 hours. So you’re in for a long day. But honestly, you’ll be made as comfortable as possible and can bring whatever you want to keep yourself occupied and fed. I always packed a lunch and water bottles to tide me over. There are water coolers to refill your bottles. For entertainment I on Netflix series…. Great distractions! 😉

Also, if you’ve not had infusions before. You’ll have an iv in your arm attached to a mobile IV ‘cart’. A stand on wheels that’s battery charged. So you’re free to unplug it and walk around the unit, out in the halls of the infusion center, use the restroom. Even though you’re tethered to the IV you’re not confined to the room if you feel like wandering and getting exercise. 8 hours is a long time to sit otherwise.

When is your visit to Mayo? Keep in touch, I’d like to know how this all goes for you! Best wishes going forward on your treatment. Lori

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@loribmt

You’re most welcome. My longest infusion time, for a different treatment, was 6 hours. So you’re in for a long day. But honestly, you’ll be made as comfortable as possible and can bring whatever you want to keep yourself occupied and fed. I always packed a lunch and water bottles to tide me over. There are water coolers to refill your bottles. For entertainment I on Netflix series…. Great distractions! 😉

Also, if you’ve not had infusions before. You’ll have an iv in your arm attached to a mobile IV ‘cart’. A stand on wheels that’s battery charged. So you’re free to unplug it and walk around the unit, out in the halls of the infusion center, use the restroom. Even though you’re tethered to the IV you’re not confined to the room if you feel like wandering and getting exercise. 8 hours is a long time to sit otherwise.

When is your visit to Mayo? Keep in touch, I’d like to know how this all goes for you! Best wishes going forward on your treatment. Lori

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Thank you Lori, I am freaking out today, what happens after you are done with the infusion? do you have to self isolate since your autoimmune comprised or can you rest for a few days and wear a mask and go out? Thanks for helping me get through this, I am supposed to call the Doctor this afternoon to schedule the appointment. eeek

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@teammayo1

Thank you Lori, I am freaking out today, what happens after you are done with the infusion? do you have to self isolate since your autoimmune comprised or can you rest for a few days and wear a mask and go out? Thanks for helping me get through this, I am supposed to call the Doctor this afternoon to schedule the appointment. eeek

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@teammayo1 I’m away from my computer right now but I have calming answers for you, I promise!! I’ll be back in about an hour.

You’ve got this and have more strength than you know!! So, schedule the appointment. Face things head on and the rest you’ll deal with one day at a time. Deep calming breaths in the meantime. Hugs, Lori! ☺️

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I so appreciate your time and support Thank you,

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@teammayo1

Thank you Lori, I am freaking out today, what happens after you are done with the infusion? do you have to self isolate since your autoimmune comprised or can you rest for a few days and wear a mask and go out? Thanks for helping me get through this, I am supposed to call the Doctor this afternoon to schedule the appointment. eeek

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@teammayo1 I took the opportunity to scan back through your previous postings so that I had some information about your lung condition, Pulmonary Alveolar Proteinosis which is an autoimmune disease.
My goodness, you’ve been through the wringer with this condition! Anything to do with lessening the severity and avoiding those lavage treatments would make a good argument to try the Rituximab.

It’s a very commonly used medication for a host of autoimmune reactions in our bodies. I know, reading all the disclaimers of some of these meds is scary berries. Drug companies are required to list all possible side effects, when in reality, the greater majority of the population has no negative side effects at all. The benefits outweigh the risks when it comes to saving a life.

Because Rituximab is an immunosuppressant, it may increase your risk of illness. So in my opinion, just keep practicing similar good health practices that you did during Covid to keep safe. You don’t have to self isolate, just use caution. Avoid being near people who are sick or have infections, wash your hands often, wear a mask when in groups of people who haven’t been vaccinated, etc.. So in essence, nothing will change from what you’ve probably been doing all along. ☺️

Really, from my experience, I walked out of the clinic each time with nothing but a sore bum from sitting. My infusions for “R” were once per week for 4 weeks. But my situation was much different than yours so don’t base your infusion sessions on mine. I honestly had no side effects at all and it did the job of calming the B-cells from attacking my spinal cord.
Is yours a one-time treatment for the 8 hours? Or do you have other sessions?
It may be repeated in the future as this lasts several months in the body.

Also, have a list of questions for the nurse practitioner who will see you before your infusion and also ask the RN’s who administer the Rituximab. They’re your best source of information regarding your treatment plan.

Have I MORE than answered your questions? 😉
Please feel free to ask anything…

~~~
Now, more information if you’re interested…cuz this is all ‘stuff’ I learned in my complicated immune system journey! LOL

In a large nutshell, our immune systems are comprised of components with the sole job to “seek and destroy” potential invaders.
Antigens are molecules that ride on the backs of the invaders and trigger an immune response as soon as they are recognized by the B-cells.
However, the B-cells in our blood can also produce antibodies to antigens that are ON OUR OWN cells or, autoantibodies, and this can be a component of various autoimmune diseases.

In rides Rituximab to the rescue! It specifically suppresses the overly excited B-cell creation and keeps them in control so that they aren’t responding as aggressively to the antigens causing the issue. In this case, your PAP. There are studies showing a good response, after several months, in helping with the symptoms of PAP. It reduces the inflammation causing your auto-immune reaction.

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Hello, I'm back, just had to run out for a bit. Ok, I guess I can be a good do bee, lol I am so sorry that you have had to go through so much, I hope your feeling better and I am not bugging you. I so appreciate all your information and the more information from someone that has gone through these infusions sure helps me from jumping off the ledge. With that said, I have to go back in 2 weeks for another infusion for 8 hours and then a CT and Pulmonary test 6 to 8 weeks after that. I have been on Leukine, 500 mcg in haled and it is just not making any progress. So I need to suck it up and be a big girl and call my Doctor. 🙂 . I sure am glad I have been able to connect with you. I will let you know how I do when I'm done with my 1st. infusion. Thanks again for all your help. Sincerely, Teammayo1

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@teammayo1

Hello, I'm back, just had to run out for a bit. Ok, I guess I can be a good do bee, lol I am so sorry that you have had to go through so much, I hope your feeling better and I am not bugging you. I so appreciate all your information and the more information from someone that has gone through these infusions sure helps me from jumping off the ledge. With that said, I have to go back in 2 weeks for another infusion for 8 hours and then a CT and Pulmonary test 6 to 8 weeks after that. I have been on Leukine, 500 mcg in haled and it is just not making any progress. So I need to suck it up and be a big girl and call my Doctor. 🙂 . I sure am glad I have been able to connect with you. I will let you know how I do when I'm done with my 1st. infusion. Thanks again for all your help. Sincerely, Teammayo1

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@lphillips @jrt26 @cag may also have some experiences with Rituximab infusions to share. @danab can tell you more about the infusion center at Mayo Clinic in Arizona to help you prepare, too.

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@teammayo1

Hello, I'm back, just had to run out for a bit. Ok, I guess I can be a good do bee, lol I am so sorry that you have had to go through so much, I hope your feeling better and I am not bugging you. I so appreciate all your information and the more information from someone that has gone through these infusions sure helps me from jumping off the ledge. With that said, I have to go back in 2 weeks for another infusion for 8 hours and then a CT and Pulmonary test 6 to 8 weeks after that. I have been on Leukine, 500 mcg in haled and it is just not making any progress. So I need to suck it up and be a big girl and call my Doctor. 🙂 . I sure am glad I have been able to connect with you. I will let you know how I do when I'm done with my 1st. infusion. Thanks again for all your help. Sincerely, Teammayo1

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@teammayo1 Oh my gosh, I laughed out loud with the do-bee! As in don’t be a “don’t be”. That was from Romper Room! Yikes, flashback….
LOL. Ok, yes, be a Do-bee and make that appointment. I’m sorry the Leukine treatments didn’t help as much as expected.
I think your doctors are on the right track with the Rituximab. As discussed before, it inhibits the production of the B-cells and can help calm the inflammation that causes your reaction. So it could be a valuable asset in getting your lung condition under control, though don’t expect it to work overnight. It is not immediate.

I’m sorry I didn’t see this response right away. When you reply to a specific conversation it’s best to hit reply in the actual comment box. That way the message will send a notification to the intended person. Or when replying post it to @loribmt or any other member using their @-name. That will insure it gets a direct response. ☺️

I’m 100% fine now and living proof of ‘better living through chemistry’. You’re definitely not bugging me at all! I’m here as a mentor to help or offer encouragement any way I can. We become family. ☺️

I’ll be looking forward to hearing about your experience. When is your first appointment?

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Hello, I also have a rare disorder – Pachymeningitis, which is basically inflammation comprised of Over active B cells all over my dura. I was originally diagnosed with a small meningioma in the cavernous sinus area. Treated with gamma knife but returned after 5 years so treated once again with gamma knife however they treated it for 4.5 hours instead of standard 90 mins. I didn’t feel well for 2 years. Then mRI showed inflammation all over my dura. Doctors did a craniotomy to biopsy the tissue and found ‘Pachymeningitis’. Treated with prednisone for 2 months then came right back after I stopped prednisone taper down. So Rituximab infusion was done for 1x weekly for 4 weeks. The first time they load you up with an allergy medication and Tylenol. It went well. I felt better but so far had to have Rituximab infusion about once a year or year 1/2. It grows back slowly. I do have to be very careful since our immune system is compromised. I’ve had 4 treatments so far since 2017 and doing well. Wear mask even double mask and wash hands often. Hope this helps.

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@teammayo1 Hi and Welcome to Connect, Im not familuar with your paricular Diagnosis But i receive a IVIG Infusion for my Blood to help fight off a virus that plagues me called Parvo b19 and causes my blood counts to be low.
But i do know quite a bit about Mayo Phoenic and my infusions are every 8 weeks. Mine usually take about 3 hours so not quite as long as yours. If I can be any help getting around Mayo Phoenix Please let me know. The Phoenix campus is under construction addind on more floors to Building 3 which is the Building the infusion center is in. Good Luck and all the staff their are just awesome.
Blessing
Dana

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