So it looks like the Ty is what's making me cold. I just took 2 Advil's and will see how that works for chills. I think its helping already. Iv'e been tired during the day lacking motavation + little more back pain then usual. I hope I get use to Ty like Rebif after a while. What I loved about Copaxone - zero sides and worked great for 2 1/2 yrs - then poof. I hoestly feel warmer now from the Advil. We'll see. Generic brand too. Ibu is Ibu. 500 count for $15 :)

Edlife, my infusion center doesn't provide blankets. I bring my own nice warm blanket each time. I was still so cold for my last infusion I think I'll bring 2 blankets for my next one. I have found that I'm almost always cold now. So I wear lots of sweatshirts and layers of clothing. Tylenol usually helps me with the achy feeling I get after the infusion but I've never noticed an difference with feeling cold :( My neuro prescribed Provigil for the fatigue. I've found that 1/4 of a tablet will keep me alert for approx 4 hours. I've never used the full dose which is 100 mg twice a day. I use as much as I need on any given day. I've never needed more that 1/2 a tablet. Of course, I do enjoy a nap in the afternoon...LOL

Good luck, Edlife!!!!!!!!!!

Third Tysabri Infusion
 

pml info on 3yrs of infusions
 

On the msworld site a poster named smallie wrote on his home page that a neuro told him (I think neuro is in Israel) that there are 3,000 people on Ty over 3 yrs with 1 case of pml. I do not know how many infusions as 13 possible infusions yearly would be 39. I had 38 in 3 yrs; will have #41 end of Dec.
Linda

Maryann thats great news! And Shyna thanks!
Why am I so punctuated? Because side effects are about gone!
Shampood my patio carpet today (which isnt easy regardless) and feel ok.
Linda as far as pml with me goes, im screwed without Ty anyway so what the hay right?
If im ever in a hospital bed from Ty, I'll call the people at FDA I spoke with about the hormone Estriol they pulled in 08 when they sided with Wyeth and I'll put some guilt trips on. Lets hope it doesnt happen. Estriol was evaulated for MS but its free compared to Ty so maybe thats why it just ended? Estriol was used for menopause..till Wyeth made it known. Still is outside USA.

Thoughts on info needed for TYsabri patients
 

Link to an MS Blogger who has a direct link to the Senior VP of Drug Safety and Risk Management for Tysabri - good chance to get our needs for info identified

http://www.everydayhealth.com/blog/t...-want-to-know/

Chris

Need Tysabri sooner
 

Hi - new member here.

I've been on Tysabri almost two years and finding it wear off at about three weeks. Anyone else have this problem and what can be done about it?

Karen

Hi Karen, welcome :D
I found Tysabri wearing off 3-4 weeks until about a year ago. I have been on Ty for 40 infusions; I now get my infusion every 33 days-this gives me 2 less a year. I find myself slowing a bit but, nothing I can't handle.

I used to say I was jonesing for my infusion ;)
Linda

Welcome to NeuroTalk Karen!! :welcome_sign:

I'm no longer on Tysabri but this forum has lots of good info and especially nice people too.

What happened a year ago that made it better?

Hi Karen,

Welcome to the community :)

I've been on Ty for 2 years. I was forced to take a holiday because I was too ill from other things: colds, shingles, etc to have an infusion for 3 1/2 months. When I restarted my infusions I found that after 3 weeks I needed my Ty fix!!!!!!!!!! But, that only lasted a few months and it has never been a problem for me before or after that period of time.

Good luck!!!!!!!!!!!!!

Welcome Karen! :)

I also found that for the first year or so that I felt as if the Tysabri was "wearing off"

It's much better now, or I have gotten used to it. Hard to say since I am coming up on #34 and things tend to bleeennnd in after a few years!

I missed one infusion due to appendicitis and removal of the offending organ, and I thought it would affect me, but honestly, I was in so much pain from the surgery, and the recovery, that I was glad I didn't have to deal with infusion on top of everything else! I had major abdominal surgery because they didn't know what it was (unusual presentation)

I don't think there is much you CAN do about it. The drug company and most docs are not likely to change the schedule and give it to you any earlier than 4 weeks after your last infusion, especially now with all the new PML news. What exactly do you feel when you feel it wears off?

Maryann, I am so happy for you!!!!!!!!!!!!!!!! :hug: :hug: :hug::) :) :)

DITTO MaryAnn!!! I KNOW I posted to you but it seems to be lost somewhere, so congrats again! :)

Really tired and can't move at all. Last week I got real grumpy too! I think I'm going to be jonesing for my infusion every month as well.

Although I may be going through menopause. Anyone had experience with taking hormones? Does it help and is it hard to balance them?

I missed one infusion due to appendicitis and removal of the offending organ, and I thought it would affect me, but honestly, I was in so much pain from the surgery, and the recovery, that I was glad I didn't have to deal with infusion on top of everything else! I had major abdominal surgery because they didn't know what it was (unusual presentation)


I also had major abdominal surgery last year from a twisted intestine - emergency surgery with 18 staples! Anyone else had this? Wonder if it's Tysabri related at all? I sure seem to have a lot more problems with other things since started Tysabri - enlarged lymph nodes, nail fungus, intestinal blockages, etc.

I don't recall any other major problems while on Tysabri. I am hardly ever sick, can't remember the last time I even had a cold. No strange things, no infections, no problems. I feel like I am boring when I post after infusions...no problems, no concerns, but boring is ok for me. I truly feel for those people who have problems. I just don't have them.

I don't associate the appendicitis with Tysabri, nor do my doctors. I more than likely would have still had my infusion if it hadn't been scheduled while I was still in the hospital recovering.

I'm finding more and more chatter about a vaccine for PML. Not sure whether there is something in the works or not but it would be a life changer for those who are worried about PML and want to stay on Tysabri or try it.

If anyone finds anything at all about tis, even if it's just talking abut it, plese post here with links and I will try to track something down a to who and when, etc.

THANKS! :)

(oh yeah, about the infection thing? I forgot about the salmonella two years ago that laid me up for weeks! Again I don't think it was related to Ty, I just ate some chicken!!!) :(

I went for my MRI today. I got the disk as usual for my records. I got to go through the new 3T MRI machine. It was louder, but it's roomier and it seemed a LOT faster! The images were crystal clear when compared to images from the old machine. The hospital donated their old machine to a hospital in an eastern block nation (can't remember where right now) so it will keep on churning out images for a country that doesn't have access to new machinery.

As soon as I got home, rather than going right to bed I slapped the disk in my computer and compared the scan to previous MRIs. I know where my lesions were since neuros have pointed them out to me for years now.

The lights are still out!:D

I can't wait for Dr. Bob the radiologist to file his report. I couldn't see anything new and I looked at every scan and compared it to the same view from each of my previous MRIs. I wish I could make some sort of moving image to show what happens, it truly is like lights fading out and not coming back on. There was one big lesion that was 22 or 25 mm? in size and it's gone completely now. I couldn't find it at all! My lovely hemangioma is still there and still the same size, sort of weird to see it on every image, off to the left and lit up like a streetlight!

I made sure to cross my eyes during every other image to give radiology and the neuro a good laugh. ;)

Lots going on yesterday
 

On a personal level, just completed 3 years on Tysabri with my infusion yesterday after taking 1 month off in November (was being tested for neutralizing antibodies after my late summer relapse)

At an investment conference yesterday, Elan provided additional info on the coming JCV Antibody Assay and how they and Biogen are communicating (monthly updates to docs) current PML info. The assay is expected early next year after they complete all the necessary steps including working with key opinion leaders (KOLs) on how the assay should be used.

http://webcastingplayer.corporate-ir.net/player/playerHOST.aspx?c=88326&EventId=2576999&StreamId=1 407015&TIK={eace2cb5-fb18-4347-837c-cadbaf43d64e}&RGS=3&IndexId=

As a follow-up to my earlier post on Elan/Biogen providing monthly PML (and usage) reports, a little birdie told me that there have been 28 PML confirmed cases as of Nov 30th, 2009.

Best Practice Tysabri Treatment recommendations
 

http://pharmalive.com/News/index.cfm...categoryid=10#

Panel of multiple sclerosis experts provides best practice treatment recommendations for Tysabri.

Dec. 4, 2009-Best-practice recommendations for the selection and management of patients with multiple sclerosis (MS) who may benefit from, or are receiving treatment with TYSABRI® (natalizumab) were published today in a supplement to the medical journal Multiple Sclerosis. The panel provided recommendations focusing on appropriate patient selection and patient management. The recommendations, which recognize the significant efficacy of TYSABRI and the need to adequately treat patients who exhibit continued disease activity, are based on U.S. prescribing information and the panel's vast clinical experience in treating MS patients with TYSABRI. Recommendations not only take into account the need to adequately treat patients who exhibit continued disease activity, but also the need to weigh the treatment's benefit with potential risks...

I also found an update on the German recommendations for Tysabri treatment to mitigate risk, but I don't have the link at hand. I'll drop it in here when I get the chance. I've got a lot more stuff that I've picked up over the past two weeks but I have to organize before I can get it out here!

It's been very quiet in here. I hope everyone's doing well and that you're all ready for whatever your holiday plans are! :grouphug:

River,

Thanks for the link. Good info but likely subject to significant change once the JC Virus Antibody assay is rolled out in the near future.


Chris

Interesting link from an investment analyst - Page 2 talks about the JC Virus Antibody Assay and potential use of the ImmunKnow Assay for JC Virus Antibody positive patients

http://www.canaan.com/downloads/news...(11-30-09).pdf

I am so annoyed that we still cannot get info on new cases of pml. I, too, found that there are now 28 cases. I have again called Active Source to be told FDA has new case info-to have them tell me the company has that info :mad: I love being bounced around. I was also told by FDA rep that I can write to Freedom of Information Act... I will but I am so frustrated/cynical right now I have already decided "IF" I get any info it will probably be to tell me the # of pml cases and NOTHING else and then do I get the pleasure of writing them each month.

Has anybody's Dr been able to get/give any info ?

Linda

Biogen/Elan have stated that they intend to provide monthly updates to docs. I've got ways of accessing this update and will post updates of confirmed PML case counts when they are available.

Probably better to focus on the PML mitigation methods they will be rolling out in the near future as these will be more applicable in indicating a given patient's risk.

May be Mad at Biogen but love my Tysabri !
 

Just got home from #41 :D and baked 7 doz cookies in my HOT kitchen!!!

Going in for #2 tomorrow....so how many of these blown veins do I have to deal with before I start feeling better?:confused:

Now that is awesome news!! Congrats on #41!!! What kind of cookies did you bake? Anything with chocolate? :)

Congrats on # 41 Linda!
I'll take any flavor cookie you are passing around! :)

Leggz- ask the nurse to use your cephalic vein the next time you go in. Most nurses insist on using a hand vein but I only use the cephalic vein that runs along the side of the wrist, usually have them hit it on the forearm before the wristbone. It's a big fat vein and hard to blow unless they forget to take the tourniquet off!

I'm scheduled for # 34 Thursday!

Thanks RW. ... but they normally start there. For some reason I only have one good vein... which is in the elbow on the right side and they have stuck it so many times it is forming scar tissue around it. They normally blow the two in the forearm, followed by popping the top of both hands before I insist they just use the elbow.

Sorry Natalie, No Chocolate... a type of biscotti :p

Wow, Grammie!!!!!!!!!!!!!!! I'm so sleepy after an infusion that I can hardly keep my eyes open....LOL Congrats on #41. I have #28 coming up in 10 days. That will make it 5 weeks since my last infusion. After this one I'm going to try and go for 6 weeks between infusions.

I just arrived home from spending 15 days with the grandchildren and I need to rest. I've noticed that every time I get back to Nevada from spending time in California with my family that my m.s. seems a bit worse for a few days....I'm shaky and weak :) But, after I rest for a few days I'm back to normal...as normal as I ever get :) I try to rest while I'm in California but with 5 grandchildren and my "need" to spend quality time with each of them I must not get as much rest as I think I do.

Good luck, Leggz!!!!!!!!!!!!!!!!!!!!!!

I hate it when they try to insert the needle in my hand!!!!!!!!!!!!!! The only vein that really works well is inside my elbow on the left side. It doesn't hurt as much and it always works the first time!!!!!!!! After using my hands on a hit and miss basis for 20+ infusions they finally began to use the inside of my elbow. It was a different infusion nurse who tried it. When the others tried the inside of my elbow they always got too much blood backing up into the tubes :( I'm going to a different infusion center....the same drs but different nurses and lab assistants.

Hi Karen,

I'm so sorry I didn't have a chance to reply to you sooner but I've been off-line for several weeks. I'm actually healthier now than I was prior to my infusions. Even when I catch a cold or get an infection they don't last as long as they did prior to Ty. My sinus infections used to last 8-9 months...it delayed my being able to begin Ty. Now they clear up in 10-21 days :)

One hour, 2 nurses, 4 sticks, and 3 blown veins later.... They finally ended up in the of the hand. But, the good news is that it is over with and I can go take a nap now.

PS-> anyone else have weird food cravings from the MS stuff? Every time I did the Avonex injection I craved one of those big fat burgers from 5 guys.

Today was Ty #2... and the second time I left the hospital in a mad hunt for the nearest taco bell... it's just weird.

In honor of the holidays and finally completing the infusion,

4 IV sticks, 3 blown veins, 2 frustrated nurses, and a taco in a pear tree.

Have a Happy New Year!

I was lucky. Fourth TY infusion yesterday and blood draw the day before, each in the elbow area and on each side with no problems.

I was doing really good. My balance is still very good, although my legs get weak if I try to walk too far. My tremors were nearly gone, but came back at the end of the third week, as did my arm weakness.

There were three of us getting Tysabri and one friend of one of the other women there yesterday. We got to talking about bras and how they feel too constricting. With the cold weather and layered clothing, I don't wear a bra. That got us to talking about how men adjust themselves and some try to do it without anyone noticing. That moved on to which side they prefer. I said that I've been married for 21 years and couldn't for the life of me say which side my husband keeps his on.

Meanwhile, one of the women said she never heard about that problem. Then, the nurse was saying, "I can't believe how the conversation has deteriorated", but she was also laughing.

I said thanks. I really, really needed a good laugh.

Anyway, you had to have been there to get the full appreciation of how funny it was. The friend I mentioned just happened to be a guy, and he was going along with it and laughing like crazy.

I got to see and hug my neurologist for the last time, as yesterday was his last day there.

I had talked to a friend and got the name of her neurologist (who isn't taking on any more MS patients) and his partner (who is), as all of the patients of the neuro who is leaving got a form letter saying that the two remaining neuros could not absorb his patients and that you were on your own finding a new one--which of course made me feel like they were shoving us out the door after all these years.

So, I made myself an appointment in March to see this new neuro. Then, yesterday I got a letter stating that I am scheduled to see a partner in my old neuro's practice. I took the letter in with me yesterday and it was explained to me that the two neuros had decided to split up the people who have been going to my old neuro for years and who are on Tysabri at their infusion center.

Luckily, I have time to decide what to do.

Okay, I'm done rambling. I hop you enjoyed my story and that I didn't offend anyone.

I wish for you all a wonderful new year filled with happiness, peace, and lots and lots of love.


http://i489.photobucket.com/albums/r...y-new-year.jpg

Happy New Year azoyies (and everyone :))
Thanks for the laugh :p
Glad #4 went well :D
Linda

# 34 down!
No problems, no concerns, as usual.
I'm tired but I've been up since 7:00 a.m. after only about 5 hours of sleep!

Happy New Year everyone!