Rituxan!!!

[hreynolds29]

Got the call yesterday that my insurance company finally approved Rituxan for the treatment of Devics disease (Nueromyletis Optica)!! I'm on cloud 9 soooooo excited!!!

[mjzolt]

Thank you kwarendorf!!! I am hoping to have that same experience!! You give me some hope that I wont have any issues, I will let you know how it goes :)

[kwarendorf]

Hi MJ - Welcome to the group.

I can only speak of my experience with Rituxan. I started Rituxan therapy late last fall. I had 2 infusions, two weeks apart. Each lasted about 5 hours.

I had absolutely no ill effects at all :-) I hoe your experience is similar!

Kyle

[mjzolt]

Read your comments, I am waiting for my insurance to approve Rituxan for me. I have a very rare disease called IGg4-RSD. My treatment will be 5 hour infusions once a week for 8 weeks and then monthly after. I am very scared because I am sensitive to medications AND I have terrible anxiety!

[hreynolds29]

Oh boy well glad you didn't mention that LOL I would have been having anxiety over that for sure!

Yea luckily my BP stayed normal the whole time, even during the reaction but I def hope that wont happen again...not fun!!

The only think that is hard right now is catching up on the sleep lol. The steroids they gave me had me up at Friday morning 3:30am and then Sat morning 4:30 am ugh...

[PeninaD]

Ah, knew I forgot something.

Yes, first time, DD had a reaction when they upped it...one interesting thing her doctor ordered was to also give her an H2 blocker...something like Prilosec!  And it helped the anaphylactoid reaction.

Yes, I know, that is known as an acid reflux/heartburn medication, but it works on a certain type of hystamine.  To be clear, this was not a proton pump inhibitor like Nexium, Aciphex, Prevacid...

[karryon55]

I'm so sorry that happened to you. I am very glad they jumped in & controlled the situation quickly. Phew!

I didn't say this before because I didn't want to frighten you. When I had my first Rituximab the hospital forgot the premeds & I had anaphylaxis. I had the same feeling of tickling in my throat but within moments my throat closed up & I couldn't breathe. I came around to a lot of confusion & docs everywhere.

I still have some minor breathing problems from the Rituximab & stay overnight in hospital because it takes so long but nothing major. It's certainly not uncommon to have a reaction to Rituximab so your not on your own with that one. What annoyed me was what I found out afterwards. Apparently my BP was very erratic & was getting extremely high, my body temp was high & I think my heart rate & respiration rate were crazy but they continued on without any adjustments to the IV.

I was one of the first people to be given it so it was very new to them. I was told that the protocol suggests that they should have stopped the IV the way I was with my obs but they didn't. Anyway all is good in the end you could say.

I agree that you know what premeds you need. I'm just glad you had a great team around you. It can only get easier from here on now. I really really hope this works as well for you as it does for me. I've got my fingers crossed.

Karry.

[hreynolds29]

Well I did my infusion yesterday, they went ahead and gave me Tylenol and Benadryl before hand and started my drip at 50, then when they uped it to 100 I had a reaction SCARY STUFF!! My throat got itchy, then started to close up, chest got heavy, shaking and dry heaving :(...they stopped the Rituxan and pushed more Benadryl and then went ahead and pushed some steroids also, after letting that work in and the reaction to stop, we started over at 50 and was able to make it to 400!!!

Now we know what premeds I need and how much for my next one on the 30th! Wheww don't wanna do that again

[kwarendorf]

Sounds like a pretty positive report to me :-)

Kyle

[PeninaD]

LOL, well, now it is the 16th in the States.
Best news is her 1 month test has a CD19 (closest commercial test to CD20) level of ZERO!
No new lesions, her neuro exam was hugely better, she should be back to school when third quarter begins, and the regional school BrainSteps team will work with her (even though they have NEVER seen an MS kid before)
.
Unfortunately, there are two teeny "black holes". Now we work on making sure there won't be any further holes.

[karryon55]

I was going to say good luck for today as it is the 16th here in Australia but it's not in the US yet lol. Good luck anyway. Thinking of you.

Karry.

[karryon55]

I use 8 weeks because I suffer from neutropenia so I'm not a good example to use. I would just see how your daughter goes because she may have no problems after her infusions. I hope she decides to go back to HS. It's an awful lot for a young woman to be going through. I hope the Rituximab is going to help her.

Take care,
Karry.

[PeninaD]

Thanks for the warning about 8 weeks....we are hoping our daughter gets back to HS in 2-3 weeks to finish her senior year. Being exposed to so many people is a big concern of ours.  As she meets with her MS specialist later today, that will be an item of concern to discuss.

[karryon55]

I have a lowering of my B lymphocytes after treatment on my blood work but not completely. My doc corrected me when I said something about Rituximab depleting my B lymphocytes. He said that it's not targeting the B lymphocytes rather CD20 & that is not in all B lymphocytes.

I have learnt to always be cautious 8 weeks after my infusions as that is when my immune system is at it's weakest. I often get sinus or chest infections but not always. I have a problem with Neutropenia though so I'm not a good example to use in this scenario. I think Neutropenia & Leucopenia are rare complications of Rituximab & mostly found in cancer patients.

If it was me I would be careful of who & what you are around after your infusion to try avoid catching anything just in case your immune system is not fighting as well.

In regards to the premeds of paracetamol & antihistamine you should definitely get these prior. I don't know of anyone that doesn't no matter what they are given Rituximab for. I'm not sure about the IVSM though. I always have had this prior to every infusion but I'm not sure if that is as widely used.

Good luck with it & let us know how you go.

Karry.  

[HVAC]

You can always ask the doctor ahead of time. Sometimes they forget my premeds when I have chemo and I have to remind them. They have to then ask the doctor, because everything is doctor's orders.

Alex

[hreynolds29]

Yup just talked to the infusion center and they told me that my doctor didn't request to give me anything.

The lady said normally those taking chemo with Rituxan, the doc will then do orders for Benadryl, Tylenol etc...

[kwarendorf]

What I read about Rituxan is that it is in a gray area between immunosuppresant and immunomodulator. Like Tysabri, it is a monoconal-antibody. It wipes out b-cells, but only a specific type of b-cell.

Prior to my infusions I got the benadryl and Tylenol, but no steroids. I had no reaction to anything.

Kyle

[PeninaD]

Yes, here too, half and hour prior to the infusion, they give SoluMedrol, Benadryl (diphenhydramine) and Tylenol (acetomenophen, a/k/a Paracetamol). My daughter seems to have some reaction to the Benadryl, so she usually ends up with IV Valium, too. Interestingly, that can cause some amnesia, so she never seems to remember that part!

[hreynolds29]

Wow, well I'm confused!

I was told it was an immune suppressant and the goal is to wipe out all of my B cells, because that is what is attacking me, with my recent diagnosis change to NMO.

[karryon55]

Rituximab or Rituxan is a immunomodifier not an immunosuppressant so in theory it should not lower your immunity. It is targeting CD20 that piggybacks B lymphocytes.

Now I'm going to contradict myself lol. In some cases (like me) it has been seen to cause lowering of other white blood cells. This is more common in cancer patients who are undergoing chemotherapy as well & are at more risk of this in the first place.

Rituximab is typically given at day 1 & day 15 originally. When it is repeated is often up to the specialist. I usually have mine 6 monthly but in some people it stays active enough to leave for 12 months. I have had mine repeated at 16 weeks once. It is also given much more frequently in cancer patients.

In Australia you are required to have Methylprednisolone immediately prior to every dose. As well as antihistamine & paracetamol to reduce any reactions or side effects to Rituximab. This is as per protocol for RA. They will also monitor your BP, HR, Temp etc regularly. If you have any problems with it they typically reduce the rate of the IV or sometimes stop it for 30 mins. I always have a 30 minute break part way through now because it reduces my infusion related reactions (IRR) or side effects to Rituximab.

I am a huge supporter of Rituximab as it has been very good to me. I hope it works as well for you.

Take care,

Karry.

[hreynolds29]

Yea I was told every time you do an infusion you go in twice, spaced 2 weeks apart and then every 6 months but yes based on what your blood work shows it could be more often. Rituxan is not FDA approved for NMO as well. So Im feeling blessed that my insurance company finally approved it!

I go in for my first infusion this week, the 16th and then the second one on the 30th! Hopefully wont have to do it again for another 6 months.  Everyone I have talked to who is on it has nothing but good things to say about it, my only concern is how I'm going to feel with a lowered immune system :/. I've already announced to the boys in my home that they better make damn sure they are washing their hands lol!!!!

[kwarendorf]

I suspect you're right DV. Given that MS is an off label use of Rituxan I think that there is a pretty wide range of protocols.

[doublevision1]

When I was suspected NMO, my neuro-ophtha said that Rituxan treatment would be once a week for four weeks, once per year. Must be some judgment exercised regarding dosage and frequency.

[kwarendorf]

Rituxan can be either every 6 or 12 months. In either case it is 2 infusions spaced 2 weeks apart. In my case it's every 12 months. I had a blood test after the first set and will have another in April, about half way into the 12 months.

Kyle

[PeninaD]

No, Rituxan is two doses spaced two weeks apart, then repeated every six months (as another two doses).  There should be monthly blood tests, and if the immune system shows resurgence, the next two week doses could be more frequent than the every six months.