Stopped Avonex, wanted Tysabri, JCV+ so maybe Gilenya, advice anyone?

[Curious1]

I am all set up with the Touch Program for my first infusion of Tysabri when, WHAM, blood work comes back as JCV+ so my MS doc wants me to think about Gilenya, which I never considered until that phone call yesterday. What do you guys out there suggest?? Any advice is greatly appreciated!

[CrazyCatLady]

I noticed it has been a month & nobody has replyed to you. I just wanted to say I have been on Gilenya since Dec 12, 2010 and doing very well.

Have you made a decision yet?

[BigA]

As I have been reminded here, I am not a doctor and not qualified to tell you which med you shoudl take.

But if you want to know what I would do (and maybe others), in your situation, I'd need to know your situation. Is your disease particularly active that you're considering Tysabri? Are you having many exacerbations? MRI activity?

[Curious1]

Gilenya

I have had progression, brain stem lesions now with symptoms and i have decided to begin Gilenya, my first dose observation is next week on th 11th.

I know many on Tysabri who say they just feel better in general and I wanted that too! Maybe this newer treatment will have the same effect!

[GandalfRA]

As I see it, I think you do not have other choice unless you go to copaxone.

[BigA]

I agree, Gilenya sounds like your best option. Good Luck

[BrianH]

I hope it works well for you. I have been on Tysabri for 4 years /w being JV+. It has worked fantastic and not one relapse in those 4 years.... but eventually the risk gets to you. I couldn't keep taking it simply because I just had my first baby and it changes everything including what risk I can take.

I had my last infusion 2 weeks ago and am going to swap to Gilenya in 2 1/2 months. I am somewhat afraid of the gap but I know it is needed and I am going to be put on steroids to help avoid rebound.

Keep us up to date on how your swap goes!

[Curious1]

So far, so good!

I have been on Gilenya for over a month now, and am pleased that I am having no side effects, other then some fatigue & chills that I can't shake. My MS doc ran blood work to check on these two issues and I'm fine, but still have these two issues. The folks who make this med tell me to contact my doc, WHICH I ALREADY DID and stated that to them in my inquiries! I see my doc next week for my usual visit, will see what he thinks. The chills $uck, it can be beautiful weather, I'm wearing long johns under my pants and still get goosebumps! I think I may switch to BG 12 when it's available though.

[BrianH]

I have been on Gilenya for over a month now, and am pleased that I am having no side effects, other then some fatigue & chills that I can't shake. My MS doc ran blood work to check on these two issues and I'm fine, but still have these two issues. The folks who make this med tell me to contact my doc, WHICH I ALREADY DID and stated that to them in my inquiries! I see my doc next week for my usual visit, will see what he thinks. The chills $uck, it can be beautiful weather, I'm wearing long johns under my pants and still get goosebumps! I think I may switch to BG 12 when it's available though.

I have been curious if I should just cancel my signing up for Gilenya and waiting for BG12... after 4 years what's another infusion or 2 right? I guess I will give Gilenya a try first through, don't knock it before I try it right?

[Curious1]

BrianH-Not so fast...

I have been curious if I should just cancel my signing up for Gilenya and waiting for BG12... after 4 years what's another infusion or 2 right? I guess I will give Gilenya a try first through, don't knock it before I try it right?

I have not thought to update my original post, but I have since seen my MS Doc who explained to my that my issue with chills is not due to Gilenya, it's probably due to the MS. As some people have an issue with cold, like heat intolerance, for some of us the nerve conduction that regulates our bodies temps is out of whack...! It is coincidental that it began when I made the switch.

Otherwise I am fine, no negative side effects for me. I didn't want to risk no therapy waiting for BG12. If I continue on this route, I can stay with Gilenya.

Good luck to you.

[rickalex2]

I have been on Tysabri for almost 5 years and now I'm JCV positive and my risk just went to 1/250. Too much risk. Doc is changing me to Gilenya. However, I haven't been able to fight even the smallest of colds or infections for MONTHS.. so we are going to let my immune system build back up until after the new year to start the new drug. I'm not concerned with being off treatments for too long because in 2009 my Neuro gave me a med holiday for 4 months from the Tysabri and I had no change in my lesions or disability. So I'm not afraid to wait to start Gilenya. I am however concerned about a NEW drug.. sigh~ I'm scared of new drugs and side effects. I pray that Gilenya won't effect me badly... Glad to hear most of you are having no problems!

[lindaincolorado]

If you still choose Tysabri your odds are good for the first 2 years.
Happy Thanksgiving and good luck

[MrsChip]

Just wondering why you had to stop Avonex so i can get the full picture before replying properly?

I had to stop Avonex due to Low White cell count - that prevented me from taking GIlenya as if you have that kind of reaction to the weakest inteferon (Avonex), it is not advisable to take Gilenya.

If you stopped Avonex because it wasn't helping enough, or had a problem with IMshots, then Gilenya may be an option to consider.

Love
Rach
x

[Curious1]

MrsChip

I stopped Avonex for two reasons, that you actually already know...!

1- I developed a pure hatred & fear of the weekly injections. When I started Avonex upon dx, I gave them to myself, easily at first, then episodes of sheer panic on 'shot day', I was a wreck. So we switched to having my husband inject me, which made it better...for a few years, but I once again slipped into immense anxiety about shots again. After 5+yrs, I just had to stop. 2- it appeared to have stopped working for me, I've developed various issues, some more serious than others, but as one issue subsided, another appeared, with no real break from symptoms for a year now.

I'm ready for a break! But I don't want to whine, I know whatever I'm dealing with, I could be much worse.

[rickalex2]

I stopped Avonex for two reasons, that you actually already know...!

1- I developed a pure hatred & fear of the weekly injections. When I started Avonex upon dx, I gave them to myself, easily at first, then episodes of sheer panic on 'shot day', I was a wreck. So we switched to having my husband inject me, which made it better...for a few years, but I once again slipped into immense anxiety about shots again. After 5+yrs, I just had to stop. 2- it appeared to have stopped working for me, I've developed various issues, some more serious than others, but as one issue subsided, another appeared, with no real break from symptoms for a year now.

I'm ready for a break! But I don't want to whine, I know whatever I'm dealing with, I could be much worse.

I started reading your above response and had to check to see if I was the one that wrote this at some point in time because thats exactly what happened to me with Avonex.. instead of getting used to the shots, I got more and more afraid of them! My husband had to give them to me and then I couldn't even watch when he did it. It just got harder and harder. However... I think with the new injection pen, I might be able to do it..? Have you tried that?