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Old 03-21-2009, 09:56 AM #1
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We have posted abou tit. They are waiting until they hit the 1000, then Pm'ing me.
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Old 03-21-2009, 06:38 PM #2
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I thought I'd check in and help get us to 1000!

Okay, I got my copaxone yesterday, and I'm not thrilled! It has more solution by far than Avonex or Rebif, so even if the needle is smaller, you poking in a bunch more stuff! I'll live, I guess.

I'm waiting to start because of this situation. I've had many UTIs over the course of my married life. I found out I was allergic to Sulfas early on in the process. Then macrobid just didn't work because it would come right back after the course of med.

I finally went to a urologist, that gave me a standing prescription of Cipro, knew I knew when I had a UTI, and so on. Of course as long as the prescription was current, never got a UTI! That was 15-20 years ago.

Cipro has always knocked out a UTI, in just a day or two. Well, I started feeling like I was getting a UTI, so I went to the local clinic and got an rx for Cipro. I took it religiously, but still didn't feel like I was getting better. It would be cloudy, and burn, and I was just tired all the time. It was an extremely painful bout, but the cloudy urine and pain in the morning stayed. I finished the 7 day course, and on the 8th day, knew I was still in trouble.

Went back to the clinic, and sure enough still infection in my urine. The doc cultured it this time, and I'm waiting to hear about that tonight. He gave me Levaquin, and told me it seemed my body was just fighting with itself.

Now I'm worried! What if the NABs from the Ty has so messed up my body that antibiotics just don't work? 3 days of Levaquin, a large dose, and I woke up again this morning with a little pain. Not cloudy, but fought with pangs of frequency and the burning. Anyone else have this kind of trouble?
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Old 03-22-2009, 04:01 PM #3
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Quote:
Originally Posted by 4boysmom View Post
...Now I'm worried! What if the NABs from the Ty has so messed up my body that antibiotics just don't work? 3 days of Levaquin, a large dose, and I woke up again this morning with a little pain. Not cloudy, but fought with pangs of frequency and the burning. Anyone else have this kind of trouble?
Glad to hear you got the Copaxone! I don't have any experience with any of the other injectables, but the Copaxone does have an intimidating amount of stuff in the syringe! I liked the needle a lot more than the others I have seen!

I think the NABs are against the Tysabri, but this would be a question for your doctor.

I know that when I had the surgery last month, my neurologist wasn't concerned with the Ty causing any problems, but he stopped # 24 to allow me to heal and get off the meds I was on, but my infusion was supposed to be only a few days after I was operated on, and I was still in the hospital at the time, so I agreed with that decision fully.

I was on some heavy duty antibiotics due to the rupture of the appendix and having so many problems with those that I didn't want to add anything else to the mix!

I have never had a UTI. I thought maybe I was getting one from being catheterized while in the hospital, but the doc said "Impossible with the antibiotics that you are on." It turned out to just be irritation from the cath itself.

I know a lot of others have had problems with UTIs. Hopefully someone will chime in with their experience!
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Old 03-22-2009, 08:29 PM #4
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Hi 4boysmom,

Try not to worry. I bet your immune system is slightly compromised from the Tysabri still (it takes 3 months to be out of your body). Remember the Cipro worked 15 years ago for your UTI. But now you are on an immunosuppresant drug so the Cipro just may not work as well or at all. You could also have a different kind of bacteria with the UTI this time around. These are reasons why you may be having a hard time kicking this infection. I know how you feel -- I got worried when it took me 2 rounds of antibiotics to kick this respiratory infection I had last month. I thought it would never go away but it eventually did. Yours will too.

By the way, I used to get UTI's all the time and it was so annoying. I don't know how you feel about Chinese herbs/acupuncture but there is a formula my acupuncturist gave me that worked really well to clear up the UTI's. It was like a miracle! I now have several bottles of this in my cupboard just in case! It is called "Coptis Purge Fire" by the company Health Concerns. You can buy it here -- maybe you'll find it cheaper somewhere else. Take 3 pills 3 times a day.

http://www.gaines.com/store/HealthC/HCNCF090info.html


Quote:
Originally Posted by 4boysmom View Post
I thought I'd check in and help get us to 1000!

Okay, I got my copaxone yesterday, and I'm not thrilled! It has more solution by far than Avonex or Rebif, so even if the needle is smaller, you poking in a bunch more stuff! I'll live, I guess.

I'm waiting to start because of this situation. I've had many UTIs over the course of my married life. I found out I was allergic to Sulfas early on in the process. Then macrobid just didn't work because it would come right back after the course of med.

I finally went to a urologist, that gave me a standing prescription of Cipro, knew I knew when I had a UTI, and so on. Of course as long as the prescription was current, never got a UTI! That was 15-20 years ago.

Cipro has always knocked out a UTI, in just a day or two. Well, I started feeling like I was getting a UTI, so I went to the local clinic and got an rx for Cipro. I took it religiously, but still didn't feel like I was getting better. It would be cloudy, and burn, and I was just tired all the time. It was an extremely painful bout, but the cloudy urine and pain in the morning stayed. I finished the 7 day course, and on the 8th day, knew I was still in trouble.

Went back to the clinic, and sure enough still infection in my urine. The doc cultured it this time, and I'm waiting to hear about that tonight. He gave me Levaquin, and told me it seemed my body was just fighting with itself.

Now I'm worried! What if the NABs from the Ty has so messed up my body that antibiotics just don't work? 3 days of Levaquin, a large dose, and I woke up again this morning with a little pain. Not cloudy, but fought with pangs of frequency and the burning. Anyone else have this kind of trouble?
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Old 03-23-2009, 09:48 AM #5
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Thumbs up Interesting Article About PML Recovery

Some encouraging news regarding PML:

http://www.mscare.org/cmsc/Informs-A...St.-Lukes.html
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Old 03-23-2009, 10:45 AM #6
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Natalie,
Do you do the Chinese stuff year round, or only when you think you're getting sick?

I was just on Cipro in 2007 (I would have been on Rebif or Avonex at that time) and it worked fine.

I've done 5 days of Levaquin, and still don't feel great. I have a call in to see what cultured, but haven't heard back yet. I don't know if the Levaquin is making me just ache all over, or if it is part of the UTI or whatever is going on. I'm just ready to feel better.

On the Copaxone front, I did the first injection last night and it went all right. I have been so down since getting off of Ty, and just grouchy about the whole C thing, that I figured I'd just get the first one done and maybe I'd perk back up.

It did seem to help a little to get that first one done. It didn't hurt at all, the needle is so small. But after the needle was pulled out, then it started to burn a little, and my leg started spazzing a little. It all was over in under 5 minutes. I guess I can live with that.

Now I just need to try the autoinjector, because my DH is going to Dallas for a week in April and I'm going to have to give the injections myself. I did a few of the A and R ones way back, but I have a mental block with it now that I'm just going to have to get over!

Thanks for your concern everyone. I always know it is safe to come here and tell everyone my sorrows!
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Old 03-23-2009, 09:45 PM #7
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Default Interesting Presentation by Biogen focusing on Tysabri

Lots of good data on Tysabri effectiveness and PML potentially being a rare, manageable side effect

http://idea.sec.gov/Archives/edgar/d...3dfdefa14a.htm
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Old 03-23-2009, 10:59 PM #8
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Hi 4boysmom, I only take the Chinese herbs when I feel a UTI coming on. Think of them like antibiotics. I usually take for 7-10 days. Good luck with the Copaxone!
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Old 03-26-2009, 04:16 PM #9
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Interesting comment by Al Sandrock (Neuroogy Head) at Biogen Idec's R&D day yesterday. Said that he believed that 4/4 of the PML patients treated properly were alive. Also more detail info on Tysabri in the Re-accelerating Tysabri PDF on this page

http://investor.biogenidec.com/phoen...ventID=2141013

Chris
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Old 04-16-2009, 05:09 PM #10
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We have posted about it. They are waiting until they hit the 1000, then Pm'ing me.
Just reminding...don't go over the 1000.

Make a new thread and I'll sticky the new one also. (close the old)


ADDED:

This thread is now closed. It will be left in the Stickies. Here is link to the new thread. http://neurotalk.psychcentral.com/thread84538.html
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