Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, December 24, 2010

55th Tysabri infusion report and a Christmas message from me...,

Hi everyone, I completed my 55th Tysabri infusion on Tuesday, all went well as usual and the infusion center where I go was rather busy..., what was interesting is that two new Tysabri patients were there when I was. Unfortunately, the one sitting closest to me was in a very bad mood (I got the feeling that she was being rather negative about her MS) and the other Tysabri patient was too far away for me to visit with her. The one patient in a bad mood had a very aggressive form of MS, and she was diagnosed only six years ago with the inability to walk and her tremors were rather severe.

When I told her that she might see some improvements in her symptoms between the fourth and sixth infusion, she seemed to have a little bit of hope, but I also believe that she was expecting to see miracles right away. When she asked me how long I have had MS and how many Tysabri infusions I had received, I told her I have had MS for almost 36 years (it will be 36 years on January 1), and that I have had 55 infusions so far and my MS has remained stable for more than four years, with no new relapses during that time. I also explained her that because I've had MS for so long, my damage was probably permanent, but she can always hold onto hope for improvements because she was still in the early stages of her disease. After that, I basically left her alone so she could think about what I had told her, and because she really did not feel like chatting. I tried to keep the conversation upbeat and short..., This disease can be so devastating emotionally for some patients that have a severe form of it and it makes me very grateful for what I do have and have had for so many years.

On a lighter note, I want to wish everyone a very Merry Christmas and a happy New Year -- may each of you hold your loved ones dear. Below is a link to a video by Rascal Flatts entitled "I'll be home for Christmas" which I am dedicating to all of our overseas servicemen and women..., as I am sure that they wish they were home with their families this upcoming holiday (I also hope you enjoy Rascal Flatts amazing harmonies).

Merry Christmas to all and to all a healthy and prosperous New Year!

4 Comments:

  • At 6:51 AM, Blogger Melinda said…

    I am new to this blog thing, I don't even know how to work this or if what I am doing is correct! I wanted to tell you I've read your comments and I enjoy your page! I am 31 female with severe aggressive relapse remitting ms. I am now starting Tysabri and I googled info on it and your blog came up. I was wondering how many infussions it usually takes to feel the difference? I was also wondering when the last time you relapsed was? I saw you had 55 infussions! Thank you, Melinda

     
  • At 12:08 PM, Blogger Lauren said…

    Hi Melinda, thank you so much for your comments and you are posting just great! ;)

    I'm so glad you are starting Tysabri now so that you can get a handle on your MS..., because hopefully the damage (from your lesions/attacks) has not become permanent but is only temporary... and as far as how many infusions it takes to start feeling a difference, everyone reacts differently to the medication, but in general, most people on Tysabri have told me that they start noticing slow improvements/differences in their existing symptoms between the fourth and sixth infusion, but remember, improvements can happen at any time! Again, this is providing some of your prior damage is not permanent.

    When I was first on this medication back in February 2005, I started noticing vast improvements in my symptoms just two weeks after my first infusion!!!

    I have been back on Tysabri since October 16, 2006 (over four years) and I have not had any relapses during that time, woo hoo!

    All my best to you Melinda, and good luck! Please let me know how you are doing on Tysabri, okey-dokey artichokey? (Heehee)

    Lauren :D

     
  • At 8:40 AM, Blogger perer ray said…

    Lauren,I have been reading your blog since may of 2010.At that time I had been on tysabri for about 9 months and in the best shape I have been in in my 23 years of being diagnosed rrms.my doctor at the v.a. told me that she was afraid of me getting pml.The underlining fact was alot different.The reason I was taken off tysabri is,the v.a.'s budget.They have a motto at the v.a. G.I..s die every day but the budget lives on.It sounds crud but it unfortunately the truth. I have been to several neurologists in the last 9 months and it is the same old story.the aether tell me that because I have 23 years w8ith ms that I am secondary progressive or there other favorite line that tysabri is to dangerous. it is very easy for them to tell me those things when they have 6 PAYING patients waiting in line.It has been 9 long months since mny last infusion and of coarse with every day i get worse and worse.I would be very obliged if you had any suggestions,sincerely Peter R.Gummerson P. s. my email is petegummerson@gmail.com thank you for your time and compassion..pete

     
  • At 12:54 PM, Blogger Lauren said…

    Hi Pete, it is so nice to meet you..., I am going to post this information here on my blog as well as sending you an e-mail, so check your mailbox as well...,as far as the cost of Tysabri, you can contact your Biogen representative (your Tysabri Case Manager) at 1-800-456-2255 and explain your situation to them. They have programs designed to help pay for Tysabri if needed (the Access program comes to mind), and you can also contact NORDs at the following e-mail address and phone number because if they have been recently funded, and you qualify, they will pay up to $5,400 a year for either the medication or the infusion. The NORDs information is as follows:

    NORD MS Premium /Co-Payment Assistance Program Conditions: Multiple Sclerosis Contact: 1-800-634-7207

    NORD MS Medicare Co-Payment Assistance Program Conditions: Multiple Sclerosis Contact: 1-866-924-0100

    But again, when in doubt, work with your Tysabri Case Manager at MS ActiveSource to pursue this route.

    I hope this information helps, and please keep me posted as to your status, okey-dokey artichokey?

    All the best to you and yours --

    Lauren :)

     

Post a Comment

Links to this post:

Create a Link

<< Home