what's after Tysabri?

[fhc2013]

Just curious if anyone might be willing to offer any feedback. On Tysabri since November 2011 (9mos). I honestly feel like it is not really helping/doing anything. I feel as if I am on a very slow yet steady decline.  Though I have had MS since May2006 I feel like I really "got MS" Jan 2011 (optic neuritis in Jan11 , flare ups, balance, feel like an older computer at times, left leg getting worse, a lot slower at everything)

Being JC virus positive...why wait and take the risk...not knowing how and when. Sorry for the babble but "it affects everyone differently" slogan can be very frustrating at times. I have MS and "I" find all the fluctuating daily scenarios unbelievable at times ...never had to "focus" on just about EVERY little thing I do each day and believe me its not much, not a fraction of what I used to do.

Any suggestions after Tysabri? feedback on LDN? feedback on Hydrgen P therapy?  (prev on Rebif, Betaseron)

[michelleric]

The options given to me last week after Tysabri were:

Cellcept was introduced to be again.  I am trying to get information on this med ASAP... The other option is to do solu medrol infusions every other month.

The end result for me, will be a pill BG 12.  My Neuro has high hopes for it, and I go on as soon as its available.

I have been on Tysabri since jan 2011.  Lots of respitory issues, pneumonia
Voice loss for 3 months last summer.  Just don't feel Ty is doing me much good.  I had extremely high hopes.

Good luck to you,
Michelle

[Sidesteps]

Hi, I am Barb.  I was diagnosed with MS in late February/March this year. My first symptoms started in May 2010 but I really got "sick" in the fall of 2010. That is when I really felt the stress on my body.  That stress really took a toll on me. I felt sick for about a year and half. I still do feel sick (fatigue, neurological symptoms and overall weakness) but there has been some improvement between flares it seems. For the last year and half, though, I was sick.

When I was finally diagnosed the doctor had counted back through my year and half history and counted 8 flares or so.... not good...which explained a lot of why I had been feeling the way I felt. I wasn't getting into a healing phase before having another flare.

At the same time, as I move further away from that flare in 2010 (it last about 3 months.) I think that flare was so severe my system was weakened which is why I had so many smaller flares following.This of your body like having an huge earthquake and after that earthquake disrupts your system you have some tremor's that follow.

While the goal is to not have ANY ... I am seeing a pattern post-DMD that seems to show that my "tremors" aren't as bad as they were. I am still averaging one every three months but they aren't taking me out like they did before.  

What I am trying to say is --- even though you don't feel good, it could be that you are still healing and have some residual inflammation making you not feel so good. It may not mean that the medication isn't working just that your body was so damaged it is taking longer to get where you want to be. It very well could be that it is working fabulous for you and you would have been that much more sick. It's so hard to tell.

[fhc2013]

Thanks for your feedback everybody.
I will stay off the Hydrogen P therapy. I will look into the BG-12 I forget what it is at the moment but I will bring it up to my doctor. Gilenya  not an option for me had a cold sore last year dr  thought not an option for me.
Prayers- we could all use more...and say more ;) thanks for the reminder

LDN: my sister uses LDN (will not take the meds out there, she is doing well) so it has always been a possibility..but I'm not doing so well and not ready to take that route at this time  Regarding Rituxan-I'm not going there but thank you for your advice. Thanks for taking the time everyone-it's truly appreciated

[HVAC]

There is also Rituxan which is a chemo drug. It is not as bad as it sounds. It is the oldest used MS drug. I have plenty of friends on it.

LDN is not a disease modifying drug. It works on your Seritonin  Sp? which makes some people feel better. This is why it is sold as the cure all from MS, AIDS, Cancer, etc. It is a super anti depressant basically.

Alex

[maxthecat43]

I don't know either.  I will add it to my list of things to ask about @ next week's appt though.

Tammy

[Needhelp16]

I've been on LDN in the past and it did nothing for me.  Some people it does wonders for.  Everyone is different, so it maybe an option you want to try.

Laura

[candy158]

I don't know what to tell you, just to let you know that I will be praying for an answer for you, and that you will get the medicine that will work for you.

Good Luck, and gentle hugs to you,

Candy

[Guitar_grrrl]

Stay off that  Hydrogen P therapy. That won't do anything for you.

You might look into Gilenya, or hold out 'til BG-12 comes out.  Either way, a heart to heart with your neuro is in order.