just had my first rituxan infusion a week ago (1/2)

[Wellnesschic]

Rituxin - Any advice on how to get insurance approval

I am interested in your vlog when you get it ready. I'm sorry it was such a nightmare, and I hope you are feeling better soon.

My insurance approval went through yesterday, so it's time to get this stuff scheduled. I'm excited and horrified.

All,

This is a great message thread. I am trying to get insurance approval for Rituxan. I have been through ALL of the MS DMD's (including Tysabri). Been denied once b/c of insurance saying Rituxan is "experimental and investigational". Doc is trying again. Any wise words of wisdom or help would be really appreciated!!!

Graci!

[69Mustang]

The drug company has a compassionate program if your insurance has denied it. Have you tried that?

http://www.genentech-access.com/ritu...pay-foundation

[Wellnesschic]

The drug company has a compassionate program if your insurance has denied it. Have you tried that?

http://www.genentech-access.com/ritu...pay-foundation

I haven't tried yet, just waiting to see if a year later and even more disease will help the argument. How are others getting Rituxan , through insurance or compassionate use?

[69Mustang]

In a former life... I was a Nurse Practitioner working with underserved, rural HIV patients. We used these programs regularly to get free medication for our patients.

Since that time the companies have expanded their programs to higher income levels, to pts whose ins denies a drug & some include copay assistance if your ins doesn't cover the meds 100%.

All drug companies have these programs for their drugs that do not have generics. Even when a generic does exist the company may still decide to provide the drug for free. Each company runs their program slightly different. Go directly to the manufacturer's site. There are companies out there who will do the paperwork for you for a fee. The applications are pretty easy & dealing with the company directly saves time.

Check it out. I know ins companies can cause us all stress we don't need. Maybe this can take some of that burden away.

[gwynnf]

Rituxan

I just had my first round of Rituxan on 10/17/2014 after 6+ years on Tysabri. I have been very tired. I'm assuming it's the new medication since it's been a "different" tired. I've also been experiencing some strange sensations in my feet like an electric pulse. I have drop foot on the left and woke up last night with severe spasms and pain unlike anything I previously experienced. I'm hoping these are all positive changes, but time will tell. My next dose is scheduled for 10/31.

[69Mustang]

Well Happy Halloween!

I experienced some electric sensations during the first hour of Rituxan. I also experienced the different fatigue. I had a few symptoms between doses and about 7-8 days of weird fatigue after my second dose.

My advice- give into the fatigue & take something that will allow you to sleep 10-12 hours a day. I did better when I did this & less well when I fought the fatigue.

Thankfully it doesn't last. After Lemtrada I had that fatigue for 10-12 weeks. It did get better over that time but it was awful for at least the first 4-6 of those weeks.

Thanks for sharing, I was wondering if I was the only one who got the fatigue. Can you let us know how long it lasted once you are done?

Good luck with dose #2!

[gwynnf]

I had my second dose of Rituxan last week. I didn't have the allergic reaction this time, so I think not having the extra meds has helped the fatigue. I didn't have the "electrical" currents in my feet or spasms as I did the first round so I can't say if it was the new meds. I did have some vertigo and flushing. Has anyone had this? I'm just a lot slower bouncing back in general. I haven't been as energized at the gym. So far so good...hopefully I'll be lucky and see a change in my mobility.

[Wellnesschic]

Rituxan - Insurance or Compassionate Use

Hi All,

I keep reading about many on this site who are receiving Rituxan. How are you getting this, through your insurance or compassionate use?

If through insurance, how are you by-passing the "FDA considers Rituxan experimental and investigation for the treatment of Multiple Sclerosis."??

Any suggestions would be really helpful. I am in the middle of writing my appeal letter to the insurance company.

txs.

[ksl]

I got the Rituxan through compassionate use through the drug company. Our insurance would not cover it for MS citing it was experimental. Even with an appeal, and a peer review my doctor was not able to convince the insurance company.

I find it so ironic....our insurance company was paying nearly $16,000 a month for Tysabri, yet they wouldn't cover an infusion twice a year for Rituxan. Go figure.

Good luck to you.

[christine bauma]

had rituxin Monday 12/15

I just had 500 rituxin on Monday, they also gave me soulmedral(cant spell) I feel so weak. But I was weak before the IV. I was on Tysabri for many years. I am not sure if the benefits yet and am trying to stay hopeful. I have 1000 on December 29th. hugs

[gwynnf]

How did your second dose of Rituxan go? I had less fatigue with the second dose on 10/31. I was also on Tysabri for over 6 years. I crashed during the holidays and could barely stand by the new year. I don't know if it's the Rituxan or another reason, but I walked 100 ft last night for the first time in years with no assistance....not a pretty walk....but it all counts. Hope your doing well!

[agnesbridget]

rituxan

Hi,

I too am going to start Rituxan. I am coming off Tysabri as I converted to positive several months ago. I have my first Rituxan infusion on 10/2 in CO. I have been told first infusion will be 1,000 mg. and then 6 months later 500 mg.

Excited....and a bit concerned. I have had an awesome run (46 months on Tysabri) and I hope Rituxan is as effective.

Interested in hearing other's experiences with Rituan.

Hi,
I was on Tecfidera for 1 1/2 years and developed new lesions so my doctor decided to take me off Tecfidera and put me on Rituxan. I had my first infusion Nov. 19th and a second infusion on Feb. 13th. He would like me to have third infusion in 3-4 months. I tolerated the actual infusion well. The only side effect I had was a little heartburn several days later. My doctor said I won't feel any improvement until 6 months after my first infusion, so that would be May. I will do an MRI in May and see if there are any new lesions. If there are no new lesions we will assume the Rituxan is working. Has anyone seen any improvement while on Rituxan and if so, how long did it take?

[gwynnf]

Hi
I had my 2nd dose on 10/31. My first dose was 2 wks earlier. I had a small set back around Christmas, but neuro didn't call it an exacerbation but thought it was from doing too much because I was feeling good. I have had several episodes where I have just gotten up and walked a good distance inside the house without a cane or walker. I usually use my scooter in the house so this was huge. I restarted physical therapy and am hoping all keeps going well. I'm going to have my next infusion between May and July.