Tysabri Check In, Support and Information Part Three
 

:Wave-Hello: Tysabri Check In, Support and Information Thread, Part Three!

Come on in and set awhile and let us know how you are doing, ask questions, tell your story or just check out the library!

Thanks for starting the new thread Riverwild :)

Just a reminder to everyone that this thread is for support for those who are on Tysabri, and for sharing information for those who are considering Tysabri.
Any other discussions related to Tysabri should please move to new threads on the MS forum, so that this sticky thread remains dedicated to just being for support and information, rather than debate.
Thanks!

Wow! I can't believe we are on Part 3! Thanks to all for making this Tysabri thread supportive over the years. It's also hard for me to believe I've been on this drug for exactly 2.5 years. And I remember starting out as a newbie and thinking Riverwild was so so far along. Time flies when you are feeling great! :D

I still can't believe I have had 47 infusions!

So much has happened since Tysabri first came to market. I think I have forgotten more than I remember about it all, and it's not from damage to my myelin anymore!

I was cleaning out files yesterday and I have this walloping huge Tysabri file with articles and studies and news reports and letters, etc. I just moved it to TWO thumb drives and my computer is blazing speed now!

It's sort of like I am now, as compared to pre-Tysabri. I'm still slow when I overdo, but it's NOTHING like I was before. My brain files are open and clear and running at a speed I never thought I would have again.

Thanks Ted Yednock!! :)

Happy 2011 everyone :)

I missed infusion #41 last Friday because of a headache I can't get rid of :( I think I'm getting a sinus infection but, I'm not ready to begin antibiotics yet. So I'm waiting to see what happens. I didn't want to have an infusion when I wasn't sure what was causing the darn headache. I have appointment next week with my neuro as well as my primary. If the headache isn't gone and I still feel congested I may begin antibiotics. I know the headache was originally caused by allergies but I wish it would either decide to become a sinus infection and I will begin antibiotics or just go away...LOL I think both my neuro and my primary will tell me to begin antibiotics if I still have the headache next week. BTW, headaches due to sinus congestion are common for me so this isn't a new symptom. I just don't know if it's an infection and I can usually tell.

Tomorrow will be 6 weeks since I had the JCV blood draw. I still haven't received the results :( I know my neuro wants me to stay on Ty regardless of the results of the blood draw because I'm doing so much better on it than I was before. Does anyone know of anyone who tested positive and chose to stay on Ty???????? My neuro did say I could take a few months off if I want to if I test positive. I just don't know what to do. At least I'm not experiencing any withdrawl symptoms from not getting my Ty fix last Friday but it hasn't even been a week. Ty has been wonderful for me!!!!!!!

I caught up on everything that has been happening by reading the posts of Ty part 2. Thanks for all of the info :) It really helps to know I'm not in this alone and that I can always count on someone here to help find the info I'm looking for.

BTW, Eddie, my wbc is slightly elevated since I began Ty. But, it's so close to being normal that the drs and I have decided not to worry about it.

hugs,
Shayna

I just got my test results....I'm negative :partytime2: :yahoo::Dancing-Chilli: I'm doing the "Happy Dance". I've scheduled infusion #41 for this coming Friday. By then I will have seen both my neuro and my primary and I'll know whether or not to begin antibiotics. I've had so many sinus and ear infections that taking antibiotics for them does not stop me from having an infusion. However, feeling crummy because of a darn headache does mean no infusion because I do get side effects from my infusions.

Thank you everyone for listening to me worry and complain about trying to get the darn test in the first place. 8 months is a long time to wait for a blood draw. and, that was a long way to go for one but it was worth it :)

hugs,
Shayna

YAY!! That's great news shayna !! I am still waiting for results and it's been 7 weeks :( and yes, I've called a few times :(:(

Fri I will get my 52 infusion. I waited 6 weeks this time, seems to be o k...
I have fought hard to stay on Ty when 2 neuros wanted to "make" me stop. My life has been better, progression has halted. I am very thankful for this med:D

RW, thanks for starting part 3

Linda

Shayna, that's awesome!!! I am so happy for you!! :hug: :hug: :hug: :hug:

Congrats Shayna! Finally received my Stratify 2 paperwork last week. Hope to get tested soon (and get results relatively quickly) as I'm now over 4 years on Tysabri.

Grammie, I hope you receive your results soon and they are negative!!!!!! I hope we all test negative!!!!!!:grouphug:

I've tried waiting 6 weeks between infusions. I found it hard not to have them every 4 weeks :( Good luck tomorrow.

hugs,
Shayna

Thanks Natalie. :hug::hug::hug: It was such a relief to finally receive the results and learn that they were negative. Now I can just continue with my wonderful Ty and not receive pressure from family members to take a break. I'm really looking forward to #41 :)

hugs,
Shayna

Thanks Komokazi :) I hope you receive your test soon. Is there somewhere close to home that you will be able to have the test done????? I had to travel to Fresno, California to have mine done...but it was worth it!!!!!!!!!!

It's amazing to realize that some people have been on Ty for 4 or 5 years. You're an inspiration to all of us :grouphug:

hugs,
Shayna

1st infusion in the bag, no problems to report :cool:

Shayna, glad to hear that you finally received your results and that you tested negative!

Linda, I cannot imagine what is taking so long! I had my results back in less than 4 weeks! Let us know when you get your results!

Chris, I can't believe that you still haven't been tested! It blows my mind that some people have to go through so much to get this test! I would think it would be in the pharmas' best interest to get the long term users tested ASAP.

Clark, so happy to hear that you had your first infusion and that the process went smoothly!

tested positive
 

hi all - I just got my 6th tysabri infusion; it's my first one since I found out I tested positive for the JC virus.

I was diagnosed 3 years ago and had 2 relatively minor flares with just sensory symptoms but had a pretty major post-partum flare for most of 2010 that peaked with swallowing problems and other scary stuff in the summer.

As a longtime HIV/AIDS activist, I know people who have died of PML (it was still relatively rare but more common in the days before effective anti-HIV drugs, when people became very very immune suppressed). I'm staying on the drug for now, but will be looking for alternatives at the 1 year mark or so.

I still have (maybe permanent) peripheral neuropathy in my feet and legs from the flare, and get my first MRIs since starting tysabri in a few weeks.

I'm wondering if anyone has ever seen statistics that look at women who had their most major or only flare as a post-partum one, and how many of them continue to experience major flares and/or progress to SPMS, and how many go on to not have flares if they don't have other children??

JD

I found out yesterday that I was positive :( as I said, I will not stop Tysabri. It would have given me peace of mind to be negative but I still feel the blessings of Tysabri for me out weigh the odds of pml... my neuro agrees.
Yesterday I had #52

:hug:

I know you'll remain vigilant. You're still a trailblazer!

We don't know that having a positive or negative response makes any difference. We don't know how or when we are exposed to the JC virus. Someone could test negative now and be exposed and test positive six months from now. There may be other factors that make a person develop PML.

I hear that old TV broadcast in my head sometimes. "This is a test of the emergency broadcast system. This is only a test."

I get the stern warning at every appointment and know to report any changes in thinking, affect, vision, right or left sided weakness, etc. despite having a negative test result.

The only good news I got last week... Ty is keeping the lesions at the same count. And My JC Virus testing was neg!
There was an issue with my last infusion (surprisingly not a blown vein this time.) but the medication was sent up a tube and not walked up from pharmacy.... 4 hours later they finally made me a new batch..... it was a royal pain. Took all day. That was Monday. Now here we are saturday, and I am still fighting the sinus infection. Getting better though.

The good news is GOOD NEWS :D
The medication mix-up doesn't sound like fun-extra four hours :(
Get well soon
Linda

I am new to Tysabri, and should be starting my infusions real soon. My question is....How do I know if I am a part of the stratify II study? Do you sign up or are you asked to join?

If you received a JC Virus antibody test, you are in strafiy II study as the test is only available in the study.

I just heard from the Tysabri assistance program, and I qualified for a $10.00 co-pay for the Tysabri. But they told me there is a second fee for the infusion site that Biogen does not/can not help with. According to my insurance company that is an additional $40.00 co-pay.

I should begin my infusions real soon now.

Just curious....what do you all pay for your infusions? I am sure I am getting a good deal, however, I am not sure where I will get an extra $50.00 a month from....yes, it is really that tight financially in our home. Still have three kids at home too.

The cost of my medication went up a year ago. Now I pay $125 for the medication plus a $35 co-pay for a doctor's visit to get the infusion. At $160 an infusion I still consider that a steal compared to some other stories I have heard about costs. And I have a major insurance company PPO plan with a company that has thousands of employees.

I'm no help with insurance costs. I have a full service plan from the old days that pays all my hospital costs, and my infusion is done in an oncology center at a local hospital. I have no copay.

I am on Medicare and have a federal plan (husband was a federal firefighter) for my secondary. I do not have a copay- I am very fortunate for the healthcare my husband and I have.

can anyone clue me in to side effects? i had my 1st infusion on Jan 14th and on the 24th i started to feel sick, like a chest cold. if this is from the tysabri will it go away like a regular cold ? i'm also very fatigued. my headaches have stopped though :)

Side effects: I think each body is different. For me, I get a sinus infection and a uti that both hit around the same time, 3-5 days after the infusion. The day of infusion I usually get really tired, and just drained of energy and that lasts about 2 days.

I also have really bad joint pain but I don't know that I can blame that on the ty seeing as I was having that issue long before I stared it. But on the plus side, my last 2 MRIs have shown no new lesions.

Some people feel great with it and can tell when they are getting close to their infusion. Personally, it hasn't happened for me. Good luck though. Glad to hear the headaches are gone. I know that is a relief. :hug:

My husband brought home a nasty cold, that turned into a bronchial infection. I have caught the nasty cold, have treated with a lot of vit C, 2 days took a generic Claritan and Monday started an antibiotic for a different reason, but I bet it's helped the cough/congestion that is almost gone. I do not attribute the cold to Tysabri-maybe or maybe not I caught it because my immune system is lowered ?

I was sooo fatigued one day I almost couldn't move off the chair. I was scared that my ms symptoms has worsened :( The next day I was much better and today I am back to normal !!!

Glad your headaches have stopped, hope you feel better soon and that Ty works great for you:D

Linda

I am scheduled to get my first infusion on Feb 2. We are leaving on vacation on Feb 10th.

I realize that everyones reactions are different, but, if you do get side effects, do they last more than a week?

I am hoping I will feel okay on the day we are to leave.

thanks :)

For me, the side effects when I started Tysabri were minimal. I had a sore throat after three or four infusions, it appeared that the parts of my tonsils that grew back after a tonsillectomy many many years ago were inflamed. It was mild, more irritating than anything else, and stopped after a few infusions.

I literally haven't been sick with the usual maladies at all since I started; no colds, no stomach bugs, nothing. I had an appendectomy, I had salmonella from something I ate, and I had a UTI for the first time ever. This is since 2007. I haven't called in sick to my job since 2007, was out on medical leave for the appy, was on vacation when I got the salmonella and went to work when I had the UTI.


I was nervous when I started, wondering what ailments I would get as a result of using Tysabri. I calmed down after 6 infusions and now it's just another day. I don't know if I am just lucky or that the revved up immune system that goes with MS is working, but for me, it's a normal life since I started.

I had #48 yesterday. No problems, no concerns, in and out as usual. I met with my neuro afterwards. He told me I am disgustingly healthy and told me to get lost. It was 15 minutes, in and out of the appointment.

I have a questions about when and why they won't do an infusion.

If you are in a Flare or have a new symptom, will they still do the infusion?

Has anyone went to there scheduled infusion and not have it for some reason?

thanks, I go Feb 2 for my first infusion.

The infusion center will ask you a few questions. If you report anything in response to those questions, they will call your neurologist and ask him for his approval or disapproval in response to your answers. You may end up waiting hours until he calls them back but they will not give you the infusion until he responds. If he feels that the infusion should be withheld, you don't get it, period. Here's more info and the list of questions:
http://www.tysabri.com/tysbProject/t...ng-program.xml

I am careful to report any new or unusual symptoms to my neurologist when they occur and last more than 24 hours, as he has instructed me to do, so he knows about anything that may be going on before I go for the infusion. For some it is 48 hours, but my neuro is watching me pretty closely after 48 infusions, so it's 24 hours for me.

I haven't been refused an infusion yet. I skipped one since May 2007 because I was laying in a hospital bed looking up at all the bags hanging on the pole after an emergency appendectomy and feeling like i was going to vomit every 5 minutes, despite taking Zofran. I decided on my own to skip that infusion, with the blessing of my neurologist. He said it was up to me but he had no objection to me having the infusion or not having it, and said that the antibiotics I was on would not affect the infusion process at all, nor have any adverse effects on me.

When you get sick, you treat the illness. When I had a UTI it was treated. I had an impacted wisdom tooth, it was treated. I had salmonella, it was treated. If you have a relapse, it can be treated with steroids.

It's the long term therapy (pulse therapy) with steroids that is not allowed. You may not be allowed to have infusion if you are on chemotherapy for cancer treatment. You will not get your infusion if you have taken any immunosuppressants- but wouldn't your neurologist know about them anyway if you are reporting as you are supposed to do?

1st Infusion scheduled for this Wednesday at 11:00AM.

I am a bit nervous. I have a friend that will drive me for this first one. My infusion site is about an hour away. So thought it best to have someone with me.

Good Luck! Please let us know how it goes for you.:)

Great success! Please let us know how it went.

The office rescheduled me to Friday. Now I have a sore throat, and the nurse told me to call tomorrow to let them know how I feel. I feel fine, other then my throat is sore. Is that reason enough for them not to do my first infusion??

I don't think so, but I'm not a Doctor. The big factor to watch for is a fever which is a sign of an active infection.

woke with a low grade fever this morning....neuro wants me to reschedule!! I am frustrated, because I am a little nervous and have been preparing myself for this....and now I have to wait again!!
at the end of next week we are going out of town for 10 days.....so don't know if I should schedule it for early in the week or just wait until we get back into town??

I'd follow my doctor's advice.
It may be that you will feel better waiting until you get home from your trip.
You seem to be very nervous and being in a comfortable place for any unexpected adverse effects is a good thing.

I know others have had aftereffects, but for me, it's just a normal day when I have my infusion, and always has been. Other than a slight sore throat for a few infusions, I had no problems. It's normal to be nervous before the first one, but the infusion team will be watching you and know what to do now, unlike when the first infusion centers opened and had no idea what to expect from this new drug.

Let us know how it goes. :)