RW, I am sending you good vibes for your insurance You are being courageous not knowing the cost to you but, I totally understand you NOT giving up Tysabri. So your co-pay has to be excellent
YAY! #54
Linda

Natalie, I tried to type to you yesterday but, my internet connection or computer or both went on the fritz

You are so much better than me-I would have been nuts waiting like you had to. Hope you didn't have to wait much longer.

Almost 3 years 2 more infusions and I'll be at 5 years. My how time flies when you're having fun
Linda

Hey you guys.... so my dr is PO'd at the insurance fiasco as I am still not covered and I missed my infusion this month. To be honest, I haven't felt this good since I stopped taking Copaxone. So I asked the question... Can we go to a 6 week schedule instead of 4 weeks. She says NO that it does not work like that and you have to keep up on your infusions every month.

I know I have heard of others going 6-8 weeks between infusions. Why does she think it would not work? I wasn't asking to come off of the drug all together, I was simply asking for a longer period between my monthly sickness. Being sick 2 weeks out of the month is killing me. I have had so much more energy the last 2 weeks, I am better able to handle the heat and I am keeping up with the kids and the busy schedules and I don't feel like death warmed over.

I realize that the infusions have tremendously helped to slow the progression of the disease as I have not had new lesions for almost a year now, which is great. But, I get the sinus/inner ear/ urinary tract infection every single month from the infusion.

Suggestions??

Legzzalot: I'm not sure why your doctor won't let you go every 6-8 weeks. I had 4 very bad UTIs 4 months in a row. The 2 weeks of antibiotics also made feel like crap each time. So my doctor suggested going every 8 weeks. It worked like a charm--no UTIs. Apparently, I'm not the only one in my big MS clinic. I was told others with infection problems went for 8 weeks and their infections went away. I would ask your doctor to confer with other MS specialists. Be aggressive about your request. Try for 6 weeks. Tell the neuro you won't take no for an answer. It's your body!

Linda, I was going crazy by the end, especially since my infusion rate is much slower than normal. It takes about 2 1/2 hours for the Tysabri and then the saline. Throw in almost 2 hours in the waiting room, plus putting in the IV etc. and I was there forever. So irritating. Luckily I had my laptop with me!

So you HAD to mention UTIs...

sigh...I can feel it coming on. I already called my doc today and he called in a scrip for me-but NO pyridium to numb the urethra- because it will interfere with test results when he sees me at the appointment I am supposed to set up with him this week...(riiightt- that will be MUCH too costly with my new insurance that nails me for every freaking test)

Grrrr...

Sorry RW. I feel your pain. Well, not this month, but no worries, if my doctor gets her way i will feel it very very soon.

Hi, Just saying hi and introducing myself
My boyfriend has MS. He's doing so well. Had one relapse a year after diagnosis, that's when they moved him onto tysabri. He's been taking it for about 3 years now.
I kinda think sometimes... ok he's good now..what next? As in, is he on medication for life? He gets depressed thinking about the long term. We wonder if there is a solution outside of tysabri...
but definetly counting our blessings in the here and now.

Tigerlilly- Here is what I have found. I am PPMS, and been bettlin this stupid disease for almost 3 years. Everything about this disease and the doctors all seems to be one big guessing game and adjusting meds almost monthly.

If the Ty is working for you BF, stick with it. It is very hard finding a med that works. Good luck.

so sorry legzzsalot and RW-none of us need extra "stuff" to deal with

Tigerlilly, I try to take life one day at a time. For today your BF is doing well and Tysabri is his med of choice...

Good luck to all of you
Linda

Legzz,

The drug was tested in trials with every 4 week dosing. Changing the dosing schedule to longer intervals wasn't tested so efficacy on that schedule is unknown so your Doctor is being cautious - less drug from longer dosing intervals means a higher risk of relapses and disease progression. The drug doesn't disappear from your system after 4 weeks (takes up to 3 months based on studies).

I've personally set up an every 5 week dosing schedule since I tested positive for JC virus antibodies and have to balance the risk versus benefit - I want a lower concentration of Tysabri in my bloodstream just in case.

Chris