My Tysabri Diary... Hi everyone...I just finished my 19th Tysabri infusion and everything went fine. Even had my blood drawn afterwards to check my liver function enzymes which I have done every six months pursuant to my neurologist's instructions. I even have a six-month follow-up appointment with my neurologist tomorrow.
One of the infusion nurses at my infusion site mentioned to me that her sister is being tested for MS, and so far, it's looking like she's going to receive a confirmed diagnosis of MS very soon. She asked me many questions about Tysabri, and I gave her whatever information I had, as well as my opinions about Tysabri, and suggested that her sister discuss Tysabri with her neurologist...Time is Brain.
When I got home, I checked my messages and here is one from a sweet young lady who is inquisitive about Tysabri (I post this in the hopes that she understands many people have questions of me about Tysabri, and I did not post her name nor e-mail address to protect her identity, just remember everyone, we are not alone with our MS):
(paraphrasing) hi lauren my name is xxxxxx and i was dio. in1995 at the time we were wanting to have a baby so no meds plus we didnt have any health insurance. in 2000 i had an exerbation that took my right side and with therapy for 2 weeks (which i hated) i was able to regain my life with only a limp. 2003 i had another on and i havent came back yet i had therapy but i lost it i walk holding onto evefrything but outside my house im in a wheelchair i was on avenox for 1 year but the side effects i could not handle so have been on copaxone since august of 2007 the first week i felt my feet they wernt numb to i really got exctied thinking it was gonna help me get my life back BUT all i can tell now is that i havent had any more relapes and i feel like im ganing weight. i have a friend thats gonna start trysbi was just wanting an other opinion she thinks i should try it. im also taking low dose naltroxne it makes me not so tired but not a lot else. please i need some input.i have 2 young children my boy is 8 and he pushes me in wheelchair i ahte that. sorry about my typing wanting to make a friend who understands xxxxx
(my reply to her)
Hi xxxxx! Thank you so much for your e-mail, sorry for the late reply, but I just got back from my 19th Tysabri infusion and I'm a little tired. I absolutely hated Avonex, I just could not handle the side effects. I failed Copaxone is that it never stopped any of my relapses.
I then went on Tysabri in early 2005, and boy oh boy, what a miracle drug that turned out to be! I had put away my walker and my cane, my slurred speech was gone, my optic neuritis was gone, my limp was gone, and my right drop foot was also gone. My balance was just starting to come back, but it was not back fully with just that one infusion (all of those improvements I had in early 2005 happened within two weeks of my first infusion!). Tysabri was then removed from the market when I was due for my second infusion in February 2005, and in mid-June, 2005 I suffered a massive relapse which landed me in a wheelchair. Until Tysabri returned to the market in July 2006, I was having a relapse almost every month (and that lasted over year). I even tried LDN too for about six months, waiting for Tysabri's return its market... it did help initially for about two months, but that stopped working for me.
When I restarted Tysabri in October 2006, I have not had relapse nor any disease progression since that time, and that has been 17 1/2 months! I still hold on to the hope that one day I will walk again, but even if I don't, my quality of life is still 100% better than it was without Tysabri.
You asked for my opinion, so here it is: you and your friend should start Tysabri therapy as soon as possible so that your respective disabilities do not become permanent. Enjoy the benefits of Tysabri while you can, don't wait... Time Is Brain... who's brain? Your brain! In my book, Tysabri = Hope... Hope for a better future, not just for me, but hope for anyone on Tysabri. You have young children, they need you, and you need them. Here is a link that you need to read about Tysabri (it is a Tysabri Brochure) that will help explain the medication to you: http://yedi.com/elan/Tysabri_Booklet_08_2007.pdf I will be here if you need me xxxxx, so please don't ever hesitate to contact me in the future and I will help you as best I can, even if it is only to listen to a friend...no worries xxxxx, think positive and remain hopeful.
All my best, Lauren :) It is dinnertime here, and I'm getting ready to have my regular treats: pizza and mudslides, then I'm off to bed after I do my physical therapy exercises. Life is good..., I hope everyone is well, and stays well. ((((hugs))))Love, Lauren :)
My Tysabri Diary...
Hi everyone, I hope you are all doing well. I've been superduper busy lately, so I'll try to bring you all up to date a little bit with my activities (boring, huh?).
I received an e-mail from a Dr. Schwartz at Healthmeida, Inc., which is a behavioral science company hired by Biogen to create additional patient support services for Tysabri patients. In that regard, they sent me a questionnaire about Tysabri to complete and return to them (Healthmedia), and this was the survey (it was completely anonymous and did not request any personal information):
1. Use the scale below to rate your level of agreement with the following statements. 0 = Strongly Disagree 1 2 3 4 5 = Strongly Agree
It is easy to arrange my schedule to get my monthly infusion.
I am satisfied with the infusion site and staff I visit for my monthly infusion.
Prior to starting Tysabri, I had been feeling sad and not very hopeful about my future.
In the past month, I have been feeling sad and not very hopeful about my future.
Taking Tysabri gives me hope for a fuller, healthier life.
The risks associated with Tysabri are outweighed by the benefits.
I am comfortable talking to my doctor and nurses about managing my condition.
I am concerned about my ability to pay for Tysabri.
It's important to me to continue using Tysabri.
I am concerned about the potential short-term side effects from Tysabri treatments. (Examples: headache, infusion reaction, fatigue)
I believe Tysabri will be effective in treating my MS.
In taking Tysabri, I anticipate that my MS will go into remission.
In taking Tysabri, I anticipate that my symptoms related to MS will lessen.
In taking Tysabri, I anticipate that my quality of life will improve.
In taking Tysabri, I anticipate that I will be able to keep my MS under control.
2. How satisfied are you with the support you get from your family and friends? Very satisfied Satisfied Somewhat satisfied Not very satisfied Not at all satisfied
3. In general, how do you set goals? Select one.
I set my sights on achieving a huge goal but sometimes become overwhelmed.
I can set manageable goals and know what I need to do to meet them.
I usually don't set a goal and just try to do what I think I should be doing.
4. MS can have an impact on physical as well as mental aspects of functioning. Which of the following best describes that impact on your abilities? Select all that apply.
I have little to no limitations with daily functions.
I am limited in the amount and/or type of work I can do at work.
I am limited with my activities outside the home (ex. shopping).
I am limited with taking care of myself (ex. dressing, bathing).
5. How does this (the above) compare to you before taking Tysabri?
I had more limitations prior to taking Tysabri
I had the same limitations prior to taking Tysabri
I had fewer limitations prior to taking Tysabri
6. Prior to taking Tysabri, how often did you feel stressed? Never Almost never Sometimes Fairly often Very often
7. In the last month, how often have you felt stressed? Never Almost never Sometimes Fairly often Very often
8. Please choose the topics you are most interested in related to MS and Tysabri. Select all that apply.
Side effects
Lifestyle information (nutrition, exercise)
Social support
Stress
Depression
Cognitive function (memory loss, ability to think)
Pacing (Spreading out of activities to keep from doing too much)
How to work with your doctor
Stories from others using Tysabri
Additional information on Tysabri
Information on PML (Progressive multifocal leukoencephalopathy)
Other suggestions (30 character limit)
9. Gender: Male Female
10. Please select your age range: Under 18 18-30 31-45 46-60 61-75 Over 75
I found this questionnaire very interesting... so I contacted the Director of Marketing for Tysabri at Biogen to make sure that they did indeed hire Healthmedia, Inc., or if this was being passed around by one of Tysabri's competitors. I was assured that this was definitely a Biogen Tysabri survey, so I completed and submitted same to Healthmedia. Those of you reading my blog who are currently on Tysabri therapy, and did not receive this questionnaire, I would highly suggest that you contact Dr. Steve Schwartz at the following address and inquire where your Tysabri questionnaire is (I would also suggest that you reference the "Tysabri Survey" in your e-mail to them):
survey@healthmedia.comThe Director of Tysabri Marketing at Biogen also advised me that the Tysabri.com website will soon be updated to provide a more balanced view of Tysabri, and also have "Patient Stories" on there as well... Wooohooo! It's about time and I can hardly wait for them to update the website! As soon as I know the website has been updated, I'll let you all know as well. :)
I have also been answering quite a few Tysabri e-mails, mostly questions from patients that wish to start Tysabri... responding to "over-sensationalistic" media reports, and I was personally invited to join a new MS forum in the UK where the MS community is just starting to finally understand the benefits of Tysabri ( that forum just went online today!).
If any other MS patients would like to join this forum, you can go to: http://www.cre8buzz.com/multiple_sclerosis and click on "Sign Up" on the top bar. Make sure and choose "Multiple Sclerosis" as your Community from the drop down menu, it's 7th down from the top. Once in you can personalize you page. So far, I have received a very warm welcome and you probably will too. :)
Oh-I almost forgot, lastly, I was offered and accepted being made co-owner of an online MS Support Group (I got a snazzy new title for my volunteer work there-whoopie! LOL).
All of the above activities are in addition to my visiting the different MS blogs/forums online and helping MS patients there, if I can, and providing accurate Tysabri information to them..So as you can see, I've been pretty busy lately (just a little-Ha!).
Take care everyone, and all my best to each of you.
(((hugs)))Love, Lauren :)
