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Old 03-27-2011, 05:12 PM #1
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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...
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Old 03-29-2011, 10:03 PM #2
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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
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Old 04-04-2011, 12:14 PM #3
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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.
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Old 04-04-2011, 12:49 PM #4
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I hope, for your sake, you can safely return to TY, JTwin..
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Old 04-04-2011, 02:02 PM #5
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Originally Posted by SallyC View Post
I hope, for your sake, you can safely return to TY, JTwin..
Thanks, Sally. I hope so too.
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Old 04-04-2011, 03:42 PM #6
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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.
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