Thinking about stopping Ty... what to do next?
 

I have found myself so tired of being sick. I woke up today with the monthly uti and sinus infection both hitting in full swing. I had my infusion last Monday. This happens every single month without fail.

Neuro says MRIs show no new lesions on the last 2 sets we have done and she swears the ty is working. But, neuro doesn't live inside of my body and isn't subjected to a week of being sick every month. I realize the agressive form of MS I have. I realize I have failed other therapies, but I am just so blah!

And I also realize my doc doesn't open until Monday so I get to spend all weekend feeling like carp until he can see me and give me an antibiotic.

So the question... I don't want more MS lesions because I have more than I can handle. BUT, I also don't want to keep getting sick every month, which is better than getting sick every week or day from injections. So now what?:confused:

I know exactly how you feel. I struggled for years to get folks to understand that it was torture to live in my body with the side effects. Too tired to take care of myself, and too medicated to get up and do better. I was in constant pain from the migraines and the pancrease issues, and yet no one wanted to believe the drugs were causing them. Funny as soon as I stopped my laundry list of ailments started to clear.

No one can tell you what is right for you, just like no one can pick which DMD to start with. its a lesson you must learn for yourself. Please, dont choose lightly. If you are planning on diet/exercise and naturpathic things, put them in place now. Be pro active, instead of reactive. Does TY have a patient advocate line that you could speak to a counselor to give you advice on how to handle it better? perhaps a person from your MD office can help put a plan in place to help prevent the issues you face while on Ty.

Either way you choose, im cheering for ya. hang in there. :hug:

Well the kid's ear infection has gotten worse and we get to add a sinus infection to it for her too. don't know if she got it from me or i got it from her, just know it stinks either way. On the plus side, she has a prescription from the last ear infection for antibiotics sitting on the counter, doc ordered just in case. Hoping the pharmacy will fill it tomorrow, if not it looks like I will have to find her a doc up here. Not driving 45 miles each way just to get zithro.

Plus I will have to drive 15 miles north to see my doc to get my script and her doc is south...so...

Hi

I have a suggestion. Why not ask your neuro if you can switch the Tysabri to every 6 weeks or 7 weeks or 8 weeks? I started getting a UTI with every infusion starting with #14. I was miserable and constantly on antibiotics. At #18 I switched to every 8 weeks and I stopped getting UTIs! And the Tysabri is still working. Now granted week 8 I see little things starting to creep back (like blurry vision) BUT my MRI's are still good--no new lesions or enhancing ones. Once I went with a 7 week break since I was out of town. It's worth trying before having to switch to the crappy injections or the relatively untested Gilenya.

Good luck!

Natalie

My story
 

I've been on Tysabri for 36 infusions and my MRIs are excellent. No new lesions in three years and the lesions I have have strunk in size. Tysabri seems to be working for me.

I haven't had any serious side effects either. A bit of nausea and a few headaches in the beginning. Fatique for a day or two after the infusion. After that I get a great burst of energy and I feel wonderful until a few days before my next infusion. Many of my MS symptoms were much improved on Tysabri too.

My problem is respiratory. My immune system is unable to defend against any virus I come in contact with which has isolated me a lot too. It's like ordering the fruit of the month basket except I ordered up a cold a month! I finally ended up with walking pneumonia.

After speaking with my neuro, we decided to take a 3 month vacation from Tysabri to see if the repiratory problems cleared up and the pneumonia healed. Then I'm going back on Tysabri. As my neuro told me, it takes 3-4 to heal from walking pnuemonia sometimes. IF the respiratory problems return, we will know that Tysabri could be the cause.

I've been off Tysabri for two months now and my energy level has dropped dramatically. My walking and balance are deteriorating and I'm seeing a serious problem with cognitive problems, speech and spasticity. I'm becoming the person I was 36 months ago and I don't like it. I'd forgotten who that person even was.

It's quite a predicament.

I hope, for your sake, you can safely return to TY, JTwin..:hug:

Thanks, Sally. I hope so too.

legz,

i hope your dr comes thru for you. i'm sorry you're not feeling well.
i wish i could offer some advice but i don't know about Ty.

i'm just sending you get better wishes.