Tysabri or Gilenya?

[anon07072023]

Hi everyone, I'm having a hard time doing my Copaxone injections since I've lost so much weight from my cancer (down to only 82 lbs now). I can't handle the pain from the injections anymore. I'm going in to talk to the PA of my neuro to see about maybe starting Tysabri or Gilenya.
It seems my insurance, Aetna, may require me to try Rebif before I'm allowed to try one of these DMDs. Anyone else have the same issue? If I can't do the Copaxone injection - how can I do the Rebif one, right??

Also, anyone taking Tysabri or Gilenya and what are your experiences with them - ie side effects, etc.

Thank you!

[mrsmac2775]

I was on Tysabri for only four months but I am here to tell you it is by far the most amazing medicine there is for ms. I got my life back the day after my second infusion. I would be on it today had I not developed a severe allergy to it after my fourth infusion. Leave it to my body to go in to anaphylaxis from the one medicine that helped me lead a normal life.

The pain reduced, balance improved, memory improved, no need for walker, and I actually had energy. I experienced no side effects and t he infusions were a breeze. I would highly recommend this medicine to anyone. Having had cancer though, you must be aware that if u ou have ever taken methotrexate you must tell your doctor and decide whether or not tysabrI is safe for you at this time.

Gilyenia is the one ms medicine I have not and will not try. You have to be monitored for 6 to 8 hours after your first dose because it can cause your heart rate to slow dramatically. It can continue to slow for up to 24 hours after the dose so there have been deaths reported after the initial monitoring but within 24 hours. The Gilyenia website and multiple reports can confirm all of thid.  It's a personal choice of mine to stay away from it. I just wanted to present you with the reasons why.

I have been on every single medicine, with the exception of Gilyenia,  including some recently released ones, and NOTHING can do for your mind and body what Tysabri can do. It's truly a wonder drug.

[bbassel]

Tysabri llowwers your immunity as well so you have to be careful and try to limit your contact with sick friends or family. After the two hour infusion they like you to remain for an hour after. Just a precaution for a reaction. My nurse said reactions occur usually in the first six months. Lately she has been letting me leave after my infusion because it has been about ten months or so. I just have to sign that I know I am leaving early.
Good luck with everything. I know how hardd a decision it is. I was against it at first because I was scared. I had so much bad luck in health lately and. Felt if anyone was going to get a fatal brain disease it was me. After imy blood test came back negative for the JVC virus my neuro assured me I couldn't get the disease with a negative result. I am monitored to make sure that doesn't change. It has been wonderful for me and after two months of fatigue that has passed, thank goodness!
Take care : )

[SarahL2491]

Here, they make you stay overnight in the hospital for the first Gilenya and there is a follow up eye exam in 3 months, here.  The Tysabri is an infusion every 28 days.  It's "biggy" side effect is the possibility of a near or fatal brain infection.  But they will monitor you for that.  

Tysabri was my first drug and if the idiot neuro in another state had been able to read an MRI, I probably wouldn't have foot drag and light sensitivity!  But sometimes you have to shop around for a good neuro.

Yes, have a good talk with your doctor before you make the decision but I agree with the others, your doctor, particularly if you are in the states, can sometimes override the requirement that you try another drug first.  I have several drugs that they don't want to give me until I have tried others and my doctor has overridden them with an explanation of why he wants me on this particular drug.

[doublevision1]

Yes Gilenya tends to lower lymphocyte count and potentially elevates liver enzymes. The more serious concern is cardiac complications.

I did go to a first dose clinic for the 6 hour observation. They checked pulse, BP and temp every hour. There is also a baseline eye exam to check for macular edema, and a bunch of blood tests.

The drug company works with your neuro to set everything up.

[anon07072023]

Thanks. I'm going in to talk to her this coming Tues. Maybe she knows if there's a way around it. I don't really want to take Rebif if I don't have to take it in order to start Gilenya or Tysabri. I'm not on any cancer treatment drugs currently (however, I just stopped topical 5-FU chemo yesterday & I don't think the Octreotide daily injections are considered chemo - I don't know). Does Tysabri lower your immune system? Does Gilenya lower your immune system?

With the Gilenya did they do an EKG on you at the beginning and then also have you stay in their office for 6 hrs to watch you to make sure your heart rate or blood pressure didn't drop too low. That's what I've been reading is the standard protocol when starting it. Thanks!

[SarahL2491]

They may not let you take Tysabri because of your cancer treatment drugs, because they always ask me that question before giving it to me.  So check with your doctor on that one.

[doublevision1]

Hi Kelly, I'm on Gilenya about 2.5 months now. So far so good, too early to say re: efficacy. Symptoms stable and MRI scheduled for March 2015. Was a bit headachy at the beginning but this side effect dissipated pretty quickly. No other side effects, no hair loss that I've noticed. Just did my follow up eye exam and all was fine. Will do some blood tests at the three month mark to check liver enzymes, lymphocytes, etc.

If there's a legit medical reason you can't tolerate injections can your physician explain this to the insurance company? How can they insist you try another injection before allowing you to try Ty or G, when you cannot do injections? Insurance companies making medical decisions....makes no sense whatsoever. So sorry for all that you're dealing with. :(

[bbassel]

Hey there, I just signed up but happened to see your post :) I was on copaxone for a year and had three relapses. Stuttering and slurred speech, loss of leg use and right side weakness, and right eye blindness. My stuttering resolved itself within two months, the walking and ride-side weakness came back 50 percent and the eye blindness about 70 percent. All within my first year of diagnosis. Have been on tysabri since Feb and haven't had a relapse since. I truly believe if I wwas allowed to sstart on it as a first line treatment I would not be permanently disabled today. It is worth the risks and there is a reason why it costs 4500$ a pop. Liquid gold. Good luck with whatever is best for you. Take care xo