RW, yes I think they are in a rush to move me through so someone else can have the chair. That really irks me. I used to go at 2 pm (which is the last appointment time). The past two times I have gone at 8 am and noon. Today the Tysabri was definitely infused over 45 minutes. Maybe the last one was too. I could have sworn it was 1 hour when I used to go at 2 pm (no one waiting to go after me since I was the last round). Regardless, I emailed my doctor asking that she write in my file that it has to be infused over 1 hour. Then I guess I get 30 mins. of saline after. And then wait 30 more mins.

This clinic can be so unpleasant. Everytime I go in there all the nurse does is whine and complain about how overworked he is. They instituted a new policy where they put a wrist band on you with your name and the drug you are to receive. He was crabbing about that today too. Seems like a good idea to me to insure the right person gets the right drug. Unfortunately, I have no alternatives that I can afford. Since my infusion is in the doctor's office they charge me a $25 co-pay to do the infusion. If I went to a regular infusion center I would have to cough up 20% of the cost and that is too much.

Anyhow, I'm feeling a bit flu-like with headache and nausea. I think I'm going to go take a nap even though it's almost 6 pm! I'm just hoping I feel better tomorrow.

I heard back from the nurse -- they said it can be infused over 1 hour the next time -- the way it should be!!!!

natalie

Hope you are feeeling better. I always have mine infused at least 1 hour and then the saline and wait at least another 30 min. I am generally there between 2 1/2 and 3 hours. do they draw blood from u before each infusion?

I also have been getting sleepy after the infusion but after that I feel good.

Be well
laurie f

Thanks laurasari. I talked to my neuro and I may even have the infusion slowed down to 90 minutes. 45 minutes has been leaving me feeling really awful for days. They follow the infusion with saline and I wait. They don't draw blood before each infusion -- just every 3 months for the JC virus test and liver test.

As this thread is reaching the limit of number of posts allowed before it begins to strain the server, would someone please start a new Tysabri Check in Thread and then I will link that here and close this one. We will leave this stickied for reference.

thanks

We have posted abou tit. They are waiting until they hit the 1000, then Pm'ing me.

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?

I used Avonex for 10 years and have been on Tysabri for 16 months. I developed some retinal infarcts 2 weeks ago and had blood tests which show I am anemic. I have been stable and have had no adverse effects until now. My neurologist stopped the Tysabri until we can determine the cause for the anemia.
Today was the first day I have had any symptoms...wiped out all day and my wife says I look pale. As if MS doesn't cause enough fatigue
Has anyone else had any similar stories?

Ron

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!

Hi Ron!
Welcome to Neurotalk and more specifically to the Tysabri thread!
23 infusions here with # 24 next week.

I haven't had any problems with anemia, but being a female I take a multivite with extra iron anyway, along with a pretty healthy diet and lots of cast iron cooking!

Did the doc check your B12 levels? That could be a factor.

I am sure if there is someone who is on Tysabri who has had experience with this, they will pop up and give you their input!