Maryann, congrats on #4!! I'm glad you are feeling better and noticing a difference.

RW, congrats on #34! Whoohoo!

My Tysabri has been delayed for yet another stubborn UTI. It's been 5 weeks already since the last infusion... I have to wait another week after changing antibiotics. The nurse suggested that I might have to switch to getting my infusion every other month because of these UTI's. She said that they have several people who started getting infections on the drug after awhile and they switched to every other month and all was fine.

I'm a little apprehensive about this. On the one hand, will it make me less apt to get PML? Or have no effect on the PML risk? On the other hand, if I'm only getting it every other month will it still work on keeping the MS at bay? Ugh...Everything with this drug is still trial and error according to the docs.

Regardless, I can say that I am sick of the UTI's. I've gotten 4 in the last 4 months. Prior to that, I had not had one in more than a year at least--actually I got one after infusion #2.

Natalie, I feel for you! After having my very first UTI, I know I don't want anymore!

I'm taking cranberry caps now along with all the other various medicaments. Hopefully they will help to stave off another one for me. I'm doing 6 a day because I hate cranberry juice, so I'm eating cranny instead.

The only thing I can tell you about the timing is what the studies show and they show that for your immune system to get back to normal and for all the Tysabri to be out of your system takes 2-3 months, so you should have some protection if you are doing infusions every 2 months, but if there is any breakthrough disease activity, every four weeks is still the recommended dose.

Hope the UTI goes away and that you get back to your "normal" soon!

Hey RW, yes I am taking the cranny capsules too! My urologist said they work better than the sugar free juice anyhow.

I think another option may be to take a half dose of Tysabri once a month. I have never had a second relapse so I guess I fear that if I take less Tysabri that may become a reality. I'm trying not to worry too much. Maybe my body wants a small break.

I think whatever relieves your stress is a good course!

It was my decision to skip the infusion after my surgery for the ruptured appendix, not the doctor's. I didn't want to add it on top of the antibiotic cocktail they were pouring into me, and I figured the stress of surgery was enough for one month. I am not afraid of skipping an infusion if I feel it's best for me, and part of our health is our stress level!

Hope things get better soon!

Natalie, sorry you are going thru this. Hope the UTI clears up soon!
Linda

Well it's somewhat official, at least for now--I'm going to every other month Tysabri. I talked to the research nurse at my MS clinic today. She deals with the clinical trials that the med. school sets up, including an original Tysabri trial she participated in. I got some useful info. And she gave me her direct line phone number which is cool since not everyone gets it!

According to the nurse they have at least 10 patients (maybe more) they have put on Ty. every other month because of chronic UTI's, vaginal infections, or respiratory infections. In addition, there is one patient who lives in Costa Rica, and a few others who can only make it to the clinic every other month and get their Ty. that way too. She said that none of them have had breakthrough disease activity with the MS on the every other month plan. But there are still many unknowns. She said Biogen had to "choose" an amount and regular schedule for Tysabri (300 mg. every month) but why they chose what they did is not completely known. My med. school is working on creating some clinical trials to do alternative dosing with Tysabri (what happens if you give it every other month, what happens if you give a half a dose every month etc. etc.). There is a PhD researcher at the school who is studying Tysabri and PML as well and they meet every week to discuss the drug and PML.

She also told me that my clinic has been sending blood samples of new Tysabri patients to the NIH for the past year and a half. The NIH is testing the blood to see if there are immunologic changes along the way that might give them some idea as to who is at risk for PML. They are also looking for information on how to create a vaccine for JC virus. When she mentioned the possibility of a vaccine she described it as 5-10 years down the road. Doesn't sound promising for something right away. Other testing sites have been sending the NIH blood too. The NIH won't tell the clinics the details except that the NIH said they have found some surprising and interesting stuff that is useful for studying the JC virus. I guess the NIH is being tight-lipped about it all--I'm only guessing but I imagine that researchers feel very protective of what they find for publication reasons among other things.

I asked about the assay that would test for JC virus antibodies that we've heard about from Biogen--the business newspapers/magazines have been saying it would come out in the first or second quarter of 2010. She didn't have much to say about that except that Biogen is very protective of what they have discovered because they want to come out with and market the test before anyone else. It made me realize that the information that Biogen slips to the investors (hey, we have this antibody test that is coming out in 3 months!) may not always be accurate--they are trying to insure their stock prices stay high so why wouldn't they be overly optimistic about everything? It's all about the $$$. The problem is they give info to the investors that is probably more on the rosy side and they give even less to the patients!! But now that I have this nurse's phone # I feel like I have a resource I can call if I want the most up to date info on the drug. Even my own neuro has talked badly about the drug companies! And wow, I just remembered that the doctor I saw at the Mayo Clinic really trashed the drug companies b/c the Mayo Clinic takes no money from pharmaceutical companies--it's against their style of practicing medicine for the sake of medicine, nothing else.

Natalie, I'm so sorry you're having such a difficult time with the UTI.

I go for # 29 tomorrow. I saw my neuro on Wednesday and we have decided that after this infusion I will be going every 6 weeks rather than every 4 weeks. This time I actually waited 5 weeks because of New Year's and I didn't have any problems with it....so, I'm hoping that every 6 weeks will work out well for me.

Every neuro I've spoken to has suggested 6 weeks between infusions after the 24 month period. But, Natalie, I'll be very interested to hear if 8 weeks works for you!!!!!!!!!!!!!!!!!!!!!!!! So far no one has mentioned taking 1/2 a dose I'll have to ask about that tomorrow. Perhaps my infusion nurse will know something about that. It would be another alternative. I'm trying to decrease my chances of PML by having less infusions. I don't know if that will work or not but until they have developed the assay to determine who is more likely to get PML I can't think of anything else to do. For me stopping the infusions is NOT an option. I'm doing so much better on Ty that I can't believe the difference it has made in my life

On another note...my husband is slightly upset with me because I forgot to mention that there are now 28 cases of PML. I heard about them while we were in California last month and I was so busy with the grandchildren that it slipped my mind. I'm trying very hard not to dwell on PML and other negative things. I really think that staying as positive as I can and trying not to get stressed every time I hear the words PML is in my best interest.

It's sad that we have to get most of our info from articles pertaining to Biogen's stock But, for them the bottom line is money even though they claim that they are interested in what is best for the patients.

No PML update for month ended Dec 31, 2009 yet. Biogen CEO alluded that the update will be posted sometime next week.

Chris

Hi Shayna,

That is very interesting that your neurologists are suggesting moving to every 6 weeks. That sounds like a good compromise instead of going completely off. I hope the 8 weeks works for me. Mostly I just hope it stops the UTI's because I have been getting fevers with the infections which really make me feel crappy. I will keep you posted! I've had to have shots of rocephin to knock the UTI's out plus oral antibiotics. I've only had #18 infusions so far. I love my Ty. But like you, though, I try not to worry about the PML. Lately I have been better about not stressing so much about it. I try not to read too much PML stuff and only come to this board to be updated on Tysabri.

Good luck Shayna with your 6 weeks!

I heard 4 more cases were noted Wed.

I've lost track of whether they are cases we already know about and they are confirming or whether they are new cases not on our charts, cause it's getting tiring trying to find more info and get a straight answer out of the !@#$%^&*.