Rituximab to lemtrada Anyone?

[mgoerke]

Ok so I had my first, and maybe only, Rituximab infusion in Aug 2014. Took a couple of months for me to feel better, but I had been in the decline after having to stop Ty after infusion #24 due to high jcv titre.

Failed Gilenya because of high blood pressure and Tec because it made my normal symptoms insanely worse and I was weak as a kitten. So Rituximab was my next option.

Two months after Rituximab I felt great, compared to how I had been. I was back to my normal level of MS'y that I had sustained on Ty. About 5-7 functional hours of living per day and more good days than bad each week. That lasted about two months and then I began to feel awful again. Vision blurred, left leg got stupid. MRI showed no new brain lesions but one had grown.

Blood work says B cells are still dead. So ms specialist says time for three day solumedrol party.

Had one good week and the last five weeks I'm back to crapland.

My insurance is denying new Rituximab infusion, which my MS specialist was ready to administer despite my still dead B cells, but insurance won't pay this time because.....

Lemtrada has been approved.

Given that and the fact that Rituximab has not kept me feeling as well as Ty did, my specialist is now recommending that we move to Lemtrada

I feel like the official DMD failure. Copaxone, Avonex, Ty, Gilenya, Tecfidera and now Rituximab.

Has anyone switched from Rituximab to Lemtrada? I know they are both monoclonal antibodies, but otherwise Lemtrada sounds really heavy duty.

Any input is appreciated!!

[BadAttitude]

Lemtrada sounds heavy duty? Maybe when it first came out but they've fine tuned the drugs they give along with it to decrease side effects during infusion. My infusions were not onerous, and I feel better after the solumedrol they dosed me with at the same time (standard). If you feel like crap now, the Solumdrol could help you, and the Lemtrada could be a good long range treatment strategy for you. I did VERY well on Tysabri but also had to stop because of high JCV titer and being on Ty for over seven years.

If you look at the chemical names of Tysabri and Lemtrada, you'll see they share a common word segment, suggestive of the chemical makeup being similar. I took that to mean that I would probably manage the Lemtrada as well as the Tysabri. So far, so good.

Good luck in your decision.

[jllandryusa]

Do it!!!

I would absolutely get Lemtrada!!! I too have been on many MS therapies (9) including Ty & Rituximab both. Neither worked for me. Tec, much progression. Aubagio, horrible reaction. Lemtrada is my dream only noone in SoCal is administering it yet. Start researching, there is SO much out there on Lemtrada & people's positive reaction to it. I have yet to read a negative one! Yes there are risks but all these damn medications come w risks. It seems to me that with Lemtrada the benefits way outweigh the risks!! I have a ton of research on Lem if you're interested. Join this group on Facebook

Lemtrada for MS treatment

Best of luck to you!!

Jen

[QUOTE=BadAttitude;1476655]Lemtrada sounds heavy duty? Maybe when it first came out but they've fine tuned the drugs they give along with it to decrease side effects during infusion. My infusions were not onerous, and I feel better after the solumedrol they dosed me with at the same time (standard). If you feel like crap now, the Solumdrol could help you, and the Lemtrada could be a good long range treatment strategy for you. I did VERY well on Tysabri but also had to stop because of high JCV titer and being on Ty for over seven years.

If you look at the chemical names of Tysabri and Lemtrada, you'll see they share a common word segment, suggestive of the chemical makeup being similar. I took that to mean that I would probably manage the Lemtrada as well as the Tysabri. So far, so good.

Good luck in your decision.Quote

[gwynnf]

Can I ask what insurance you have that denied the Rituximaub? I am also on Rituximaub and have changed from Blue Cross to Medicare. I am due for my next dose very soon and am wondering if I am going to have a problem. I, like you, am out of options.

[jreagan70]

Blood work says B cells are still dead.

That's really interesting. And it may not be a surprise. My neurologist explained to me that Rituxan kills B cells, but MS is mainly a T cell disease. So Rituxan may not help a lot of people with MS because, even though their B cells are dead, T cells are still functioning and continue to cause problems.

I hope Lemtrada works for you!

[jllandryusa]

Hi GWYNNF,

My ins did not deny Rituximab. I had Medicare part D @ the time.

[gwynnf]

Thanks Jennifer. I have Medicare A & B & D and the Rituximaub is (in the past) billed to medical insurance as an infusion. I'll find out soon.

My B cells are still absent so my neuro is pushing out the next infusion to 9 months as long as B cells stay away. He explained all the T cell and B cell interaction. What I took out of it is the T and B cells are thought to "not get along" which causes the immune response.

Whatever is going on is good so I am hopeful it stays that way.

[mgoerke]

I have Aetna.

[Diamond57]

Side Effects???

For those of you who took Rituxam????? what kind of side effects did you eperience?

Thank you...
Diamond

[gwynnf]

I am on Rituxan. I had my first infusions October 2014. I didn't have any bad side effects. I was tired for a day or two but this could be from the other meds I got at the same time.