best of luck to you!

Hi Dee ,
Good luck with it. I had Rituxan in May 2014 and have now dropped from 30mg Prednisone down to currently 7, trying to now find my level. I still have 3 weekly IVIG though and methotrexate.
All the best.
Kez

Make sure you are premedicated with solumedrol, tylenol and benadryl. The chances of an allergic reaction are greatest during the first infusion.
The only side effects I had was a small allergic reaction, itchy throat, and a little more tendency for catching what was going around. But the benefits far outweighed that.
You'll do fine. Hope it works great for you. I am looking forward to getting my second round soon.

Thats great news that its approved and I am sure you will do just fine.

Limpnoodle is correct, they should premedicate you Solumedrol, Tylenol and Benedryl. My Oncologist also adds Ativan (a form of valium) to the pre-meds to just help you relax, it does take the stress levels down some.

If you do have any itchiness in your throat, I did, be sure to let them know as they may want to give you just a bit more solumedrol, that itchy feeling in your throat and / or ears can be the sign of a problem about to start up. Its easy to handle with the meds though, just let the nurse know. I have had that each time now.

Overall the Rituxan has really helped my MG and like Limpnoodle I am finding I pick up the common bug of the month it seems, but thats been a small proce to pay for feeling better. I still need some Mestinon every now and then, but nothing like before.

Joe

Did any of you gain weight? One of the side effects listed was extreme weight gain.. I am already fighting that battle. I gained 30 pounds since prednisone (and the above photo :(. However, I have lost 12 since Jan 1. The battle of the bulge, less likely to win that battle than MG!! Some one ate the skinny me. sigh...

No weight gain here, if anything I have lost weight since I started the series of 6 infusions in late November. Some of that could just me being more active with the MG being musch less of an issue.

When I was getting Rituxian the only problem I had was stomach issues. It did help the mg, however I had yo stop as I also now have a lung disease , pulmanory fibrosis and the med can make it worse.

Good luck
Annette

My throat started itching about halfway through the first treatment when they increased the rate. So they stopped the infusion for thirty minutes and gave me 50mg benadryl iv, then when they resumed, they went back to the previous rate and I was fine the rest of the treatment.
Next infusion, they did not exceed that prior safe rate.

Limpnoodle thanks for your note, I had forgotten the other pre-med they give me is Pepcid.

So the pre-medication list is:

Solumedrol
Benedryl
Pepcid
Tylenol
Versed

Joe

Hi Dee,
I have been fortunate, needing only Benadryl as pretreatment for IV-Therapy with Rituxan (my clinic uses the generic rituximab).
The Benadryl helps to prevent a slight arm rash, that looks like petecchia, but it fades away after a couple weeks (the arm rash kinda fits that "itchy" category of side-effects).
You can see from comments here on your topic, and in other discussions as well; Rituxan is helping many people, with many different diseases.
I have now had 4 infusions, 6-months apart. The first 2 infusions, pulled me back from the brink. Round 3 and 4 have allowed me to go from 60MG daily of Prednisone, to only 3 mg. Maybe soon, I'll be prednisone free. My adrenals are waking up.
Getting rid of all that prednisone? I have lost 20 pounds, which feels very good. Expensive, though. New clothes.
I also have peripheral neuropathy and cramp-fasciculation syndrome as well. Since Rituxan, my meds for those problems are reduced by 25-percent. I'm not sure that can be associated with Rituxan or not.
I'm solidly in the pro-Rituxan camp. As with any immune-suppressing med, your neurologist and/or oncologist will want to watch your blood panels. Mine are always where they are expected to be, below the low-normal range, but acceptable for someone with my profile.
Almost forgot: some of us have so little reaction to Rituxan, the IV is sometimes pushed into us at higher and higher rates.
I think all rates start out low: 30, then 60, then 120 and so on.
I receive 1200mg of Rituxan, over 6 hrs, give or take. Some people go at much slower rates.
Good luck! - Ross
(... it's funny ... since I've started on Rituxan? I've not even had so much as a sniffle, in almost 2 years ... what's up with that ...)

With Ritux you are not necessarily more susceptible to colds or flues, but to infections, like shingles and such. As per my hematologist. I have had no reactions to Ritux, high dose, slow rate. I was given Benadryl and Tylenol and 100 mg Prednison- IV beforehand to ensure body does not reject medication long term. I have been on Ritux since 2012 and still get this every 4 months. I am not on Prednisone at all anymore, only on 3mg Tacrolimus. I have improved greatly thanks to Ritux, however I deflate a bit towards end of 4 months. Quality of life much improved.

Wow! thanks guys. I was a little worried when I read the side effects on the page the doctor gave me. Maybe, they should wait until after, ha!. Now, just waiting for all the labs to be finished.
I am so encouraged by Ross's report. wow! Sounds wonderful. I am sick and tired of being sick and tired.
Glad you all are in my life
Dee

wow, how spooky is all this talk...perhaps I shouldn't read so much of this. I want to know if this is something that everyone that has M.G. has to do? If so I guess I need to read more if not I will not do research on all this...wow you all are so brave, I hope to be as strong as each and everyone of you if and or when I have to do these things.

Were any of you aware that Feb. 28th is National Rare Disease Day? Find out more at: http://rarediseaseday.us/ I want to take this information to our local news paper and see if they will help bring awareness to rare disease day so that others may learn about M.G. and the many other rare disorders out there.

Dee hi have never done the ritux but from what Im reading here it sounds as though has been successful for many people with not much side affects.....So I know you will do fine and you will feel better and better...!! Good luck and will be thinking of you and keep us posted..Hugs jacki

Dee I can totally understand your comment of being sick and tired of being sick and tired. I think thats been my motto for the last year or so. The Rituxan is worth the trial to see if it works for you.

I had tried:

Imuran (was on it wen I developed MG)

Cellcept - stopped due to severe GI issues with it

Prednisone - helps some but I react funy to it, anything greater than 20mg makes me weaker, go figure

IVIG - Does help me but not for a long time. I spend 5 days in the hospital for the infusions and needed it every 2 months.

With all of that I still ended up in the hospital twice last year, once for almost 2 months in the ICU and I do not remember the month of June at all.

So far Rituxan is actually reducing the MG to a point that I almost do not notice it unless I have a cold or something like that. For the first time n 2 years I have my strength back.

TeraHug, welcome to the group, yeah it does sound spooky and some aspects of MG frankly are. There are no 2 ways about it.

I am still fairly new to this as I was diagnosed in April of 2013, but I have learned a lot since then, a lot of it the hard way.

The only advice I can give is to:

1.) Take MG seriously from day 1
2.) Be your own advocate, educate yourself.
3.) Find a doctor familiar with MG that you trust and can work closely with
4) Learn to listen to your body, learn what affects your MG
5.) Avoid stress as much as possible, emotional and to a degree physical such as overexertion or the high heat or the cold cold.
6.) Be sure you have a treatment plan that you are comfortable with

I am sure others have a lot to add to this list as I know I am still learning each and every day how to live with MG and avoid getting into trouble.

Dee do you know when you will start your infusions and do you know how many they are planning to give for the first round of this treatment?

Joe