I have no information to contribute, but wishing you all the best, and hope you can get some information from others. Take care.

I haven't had it, although I have heard rumbles in the distance, but from what I understand reactions vary--not surprising with this group. I hope when people chime in, they will chime in with their premedication regimen since with this infusion adequate fluids and premeds seem to make a lot of difference.

I am definitely interested in this topic as my neurologist is looking at switching me to rituxin with methotrexate.

Joe

There are more and more of us here, all the time - who are receiving Rituxan IV-Therapy.

I've had 2 rounds of Rituxan, along with many others here.
A typical round of treatment is - one IV-Therapy weekly, for 4 consecutive weeks.
Some of our DS Friends? Have had several years experience with Rituxan, some of them involved in clinical trials.
Rituxan is a relatively new treatment, showing good results so far, in these trials.

Unfortunately, many people will be away - for much of the Thanksgiving week. (See how well Rituxan works for them!)

Rituxan is a strong treatment, originally developed for leukemia, and for organ-transplant patients. Similar to many meds for MG'ers? Rituxan suppresses the immune system, kicking in over several months. As the Rituxan kicks in: many MG'ers see tremendous benefit.

Rituxan is not necessarily ''fast-acting'', like Prednisone, or Plasmapheresis, or IVIG.
This sort of timing? Makes Rituxan - similar to Imuran and Cellcept. (Sidenote: I cannot take Imuran or Cellcept. Both caused ny blood-counts to crash, within weeks. This is much less a problem, with Rituxan.)

I did have some mild skin reactions, to Rituxan - which disappeared completely, after a month. It was not an uncomfortable skin problem.

Benedryl, taken close to the start of your Rituxan? Seems to be a standard pre-treatment, all over the place.
I was given a Benedryl infusion, not pills. Put me right to sleep!
The next thing I knew? Infusion - over!

Search for Rituxan, in the ''Discussion'' box, at the top of each posting topic. That will give you some more info. Don't be scared off - by people listing side-effects. All Snowflake treatments - are much scarier to read about - than to go through.

My Neuro & I both believe - that Rituxan appears to be working for me. Yet it will not be until Feb/March - until more can really be said about Rituxan's effectiveness for me.
- Ross
PS: it's true: Rituxan - does not like some Snowflakes. Yet that's true - with every form of treatment, no matter what it is.

I can't offer any info but the specialist I saw in NYC recommended Rituximab. I am trying IVIG again with a different dosing schedule....two days of 1/2 the dose I had taken in the past.....repeated every other week. If no effects with this I will follow up on the rituximab. Did you have any trouble getting it approved through your insurance? Please do keep us informed on your process. I wish you an easy and successful treatment!!

Thanks for your comments and support everyone. Insurance did reject the treatment at first, but my neuromuscular specialist had a peer to peer review over the phone with the insurance company and won approval for the treatment.
I am really excited (my first treatment is Monday) but also nervous. But then I have to keep in mind I was nervous about Ivig and plasmapheresis, too. In fact I was so scared of Ivig the first time it was ordered that I chickened out and cancelled it.
I did a little research and found that my other officially Undiagnosed autoimmune diseases also respond to rituxan.
My doctor feels that this would be the most reasonable treatment for me since I did not respond to prednisone. In fact it made me worse.
He said that in his experience, if a patient does not respond to steroids, they will usually not respond to steroid sparing agents such as Cellcept, either.
I have to trust that he is giving me the best advice, but a few prayers on my behalf would be much appreciated.
Thank you all so much for being such a great support and sounding board.

Good luck. Let us know how it goes. I'm off to univ of wash for a consult about rituxan. I'm in the first stages of insurance. Take care.
Barb

I have had two rounds of rituxian . I am told it can take up two 3 months to work. It is doing its work as my B cells are almost zero. They should pre med u. Mine gave me zirtec , steroid, zofran . I had no problems except bathroom issues that night at home.
Good luck, more and more are getting this treatment, let us know how u do.
Annette

I would love to talk about my experiences although as positive so far as everyone elses. About 1.5 weeks ago I finished my first cycle which was delivered once weekly for 4 weeks.

First let me tell you about my pre-medications. I was supposed to take Benadryl, Tylenol and Salumedrol (125mg which is appx 150mg of prednisone). I will admit I am a bad patient but I refused the steroids the first time since I am on steroids (50mg every other day). I took the other things. I had fairly bad shortness of breath during the infusion which I am told was likely bronchospasm which is a common reaction to this med. Later that night appx 2 am I was unable to move. Unable to speak, get out of bed get a mestinon anything. Scarry.

I had a reaction once before to Benadryl which actually sent me into respiratory distress so I decided this was probably the problem. On my second dose I refused the Benadryl but took the Salumedrol. I was doing well for a few days and then 4 days later crashed. This time was worse - could t move my limbs, form my mouth muscles to drink out of a cup to take mestinon (my hubbie got a squirt bottle and squirted into my mouth), couldnt talk etc. We were fairly close to going to the ER. This lasted over 12hrs and then subsided. However, I never got back to normal.

Then next 2 doses similar with worse symptoms many days later. I am fairly weak at this point. Not sure exactly why. I have spoken to several neurologists with experience with Rituximab in MG patients. They have never seen exacerbation of symptoms but state there have been too few pts on it to really know. I am wondering about these high one time dose steroids. Perhaps my body is so excited to get the extra steroids that I crash afterwards waiting for the higher dose. Perhaps it is the rituximab. I am really hoping that this works. I will get my next cycle in 6 mos. Whatever it is - I am really weak and trying to figure out if I can go for plasmapheresis this week.

I hope this helps. I would ask a doc to clearly delineate why you are being premedicated and what is really necessary. I think with MG less is better to not throw off our delicate balance of our new normal!!

Best of luck!
Nicole

I just completed my 2nd round of rituxan.
The first round was in patient for exacerbation. The first infusion, I was premeditated with Zyrtec and zofran. In the middle of the procedure I began to have severe bone pain in my legs and severe chills (riggers). I was given dilaudid for the pain. For the second infusion, solumedral was added to the premedications. The infusion went without a hitch.

I had no side effects with the 2nd round.

I believe rituxan helped me out of my 69 day crisis and the 2nd round 8 months later is helping. Like Ross stated, time will tell.

Wow Nicole, I am so sorry you have had trouble. How we each react to drugs is so different.

Limpnoodle, good luck Monday and let us know how you do. My infusions took about 7 hours. I wore comfy clothing and brought my own pillow (hate hospital pillows) my iPad, some snacks and water. They offered lunch at my infusion center (for a fee)

-sherry

Had my I first rituxan yesterday. I got the nurse to ask the doctor for solumedrol, Benadryl and Tylenol because none was ordered. I only took 25 mg Benadryl to start because it tends to weaken me. I usually only take 12.5 mg at home because of this.
All went well and I dozed quite a bit due to getting up at 3:30 am to make the three hour journey, until about halfway through the infusion when the nurse increase the infusion rate. I woke up and started having intense itching in my soft palate and throat. They told me afterward that my face had become extremely red. They immediately stopped the infusion and gave me an IV bolus of 50mg Benadryl and I had almost immediate relief from the itching. They ran in normal saline for thirty minutes, the restarted the infusion at the previous lower rate. So I slept a lot of the rest of the treatment. Which lasted till after 5pm. The Benadryl made me severely weak to the point that I could not lift my limbs and the blankets I was covered with literally felt like they were made of lead, but that wore off by evening.
I had a change of dosing schedule. Originally going to have the smaller doses given over four weeks, but when the doctor rewrote the prescription, he changed it to a larger dose given the first week, followed by another large dose in four weeks.
I feel quite good today and even have rosy cheeks, which I haven't seen in ages, but I am sure that is due to either the steroid or the rituxan.

So glad you are doing much better and so glad you were taken care of so well!! Here's to hoping this works for all of us!!