Big Change Coming

[Lulu54]

I’ve held off on making this news public to you wonderful folks because honestly I felt like I didn’t need the distractions of lots of conversation about my choices and did not want any outside influences on my decision.   In  November, my neuro and I discussed changing my therapy – my body had decided it didn’t like the copaxone (I was back to egg shaped lumps at all the injection sites, and I had developed discomfort with each shot.  I was less and less compliant with my injections and found I was perfectly happy to skip multiple doses before my conscience would get the better of me and make me pick up my autoinjector again.

Copaxone has been good for me for over three years without much in the way of side effects or new evidence of disease progression, and then suddenly that changed.    I asked my neuro about taking a break from therapy for a while, but a drug holiday was definitely not an option in his book.  We discussed the variety of choices and why they weren’t good for me – the interferons and the problem with depression; Gilenya with my  heart attack history,  and now the copaxone with the reactions.  That  didn’t leave me many options and he sent me away for a month to contemplate switching  to Tysabri.  

I had a really good discussion with him about why in MS don’t we treat the disease as aggressively as possible with the strongest drugs we can get.  I definitely don’t want to just wait around and see if I can be lucky or not and avoid further disability.  I am at that point I want to be as aggressive as I can with my treatment.  In no way did my neurologist try to sway me to make this decision and I respect that he sent me off to think it through on my own and to do my research.  


In early December I chose to make the switch from Copaxone to Tysabri.  I did my assigned  homework and also had the JC virus test completed  – and I am fortunate to be JC negative. That test result made this decision so much easier because there are no documented cases of PML in people who are JC Virus negative.  We also agreed that this is a temporary therapy until BG-12 is approved and a few months of its use are done.  


It has been a couple months since my last injection and it has taken a lot of patience to work through all of the logistics and paperwork.  The coordination between my insurance, my specialty pharmacy, the pharma’s assistance program, and the MS clinic was not necessarily the best orchestrated performance, but it is all done now and my drug is waiting at the clinic for me.

Honestly, I can see how easy it would be to get lulled into the false sense of security that it would be ok to stop therapy completely.  It has been nice to be without a DMD  drug and  the injections. Heck, it has been great to be without the shots. But I do know from reading the studies that right now the best option I have is to be on a DMD of some sort.  I’m working too hard to stay out of a wheelchair and not be dependent on others to not give this my best shot, and right now Tysabri is it.

My first trip to the infusion center will be  Wednesday.  I can’t say I am excited, but I do look forward to being back on an MS treatment and believe that Tysabri will be a good choice for me.   Making this move feels right but is still an odd feeling.  A friend who switched therapies a while back said it felt like breaking up with a boyfriend, and she is so right.  Copaxone has been my steady for a long time, and I mainly have good things to say about it until recently. This change illustrates a good reason why we have more than one option for this disease and how it’s important to find the one that is right for us.

It is important to me to share this change with all of you who have read my words of support for all of these different treatments, but especially Copaxone.  

I’ll definitely let you know how this first trip goes – I expect nothing but good things from being aggressive with my treatment and not waiting until I am further disabled to make this switch.    

Thanks for listening,
Lulu
Because this is one lulu of a disease to live with!

[johnniebear]

Thank you for sharing your journey with us.  

Everyone's MS is unique and each  decision each person makes about whether to use DMD'S or not, then choosing a treatment plan and sticking with a plan seems so exhausting.

I think your proactive with your MS..

thanks

J.b.

[lovemy6monkeys]

Lulu,

I'll be thinking of you on Wednesday! I hope it goes smoothly for you! Lots of ((hugs))
~Jess

[LisaJF]

With change, especially something as important as this, takes great care and deliberation as you have done with your research and collaborating with your Neurologist in switching your regimen.

I would go as far as to say that the benefits from your choice will reduce the unpleasant reactions that you have had with Copaxone and hopefully be as aggressive and keep your MS at bay for a long, long time.

I sincerely wish you the best and I'm glad you are proactive in your care.  Many can learn from you in this respect.

Lisa

[Lulu54]

You all are the best.  With this overwhelming response, you can see why I kept quiet about this thought process until I was sure and had everything arranged.  I feel so very positive about this choice, and there are lots of people here who are already on Tysabri and doing well.  Rita has been a good example with her 43+ infusions and Michelle really stepped into the unknown and started on tysabri as well.  I know there are others here who I am overlooking, and my apologies for that. Ren and Quix are also on Tysabri.  All of them were helping to lay the groundwork for all the research into safety factors and I will definitely benefit from that.

I'll update everyone next week on this adventure.  There will be so much to share when I get past Wednesday.

hugs to all of you and thanks for the encouraging words,
L

[jenphilly]

Lulu -

Sorry the copax was giving you such problems!  But, I am happy to hear you have a great option in Ty.  

You know everyone here wishes you the best and we can't wait to hear how you are doing on Ty.  

We're thinking of you and sending all positive thoughts and energy your way :)

Hugs,

jen

[michelleric]

As I am currently sitting in the infusion center getting my Tysabri, I read your post Lu.

I am glad u researched your options, as I know u r excellent at finding all the important information.

I know u will do well, and being JC negative is a great thing.  I a. also JC negative and that made my decision easier.

My neuro said she will switch me to the med u mentioned, as soon as it becomes available.

I wish u the best Lu, and of course will be thinking of u,

Love,
Michelle

[SarahL2491]

Lulu gives us all courage!  She's certainly held my hand thru this decision!
I also wish her the best and good to hear from those of you on Tysabri.  I will admit I am a bit nervous.

Lulu does give us tons of information we might never gain otherwise

[kwarendorf]

I can't comment on what it's like to switch from another DMD to Tysabri. I can comment on what it's like to be on Tysabri. I think you'll like it :-)

I'm thankful that I only have to take an hour out of every month to get my DMD. I'm thankful that I don't have to give myself daily or weekly injections. Most of all I'm thankful that, after 3 infusions, there are no side effects! No injection site reactions, no flu like symptoms, no nuthin' :-)

I'm happy that you have found your new DMD path!

Kyle

[Cosmobirdy]

LuLu,

It was a big decision, and you approached it calmly and logically.  You did your research, so you were able to make a truly informed decision.  You are such a good example for all of us here!  I wish you all the best with Tysabri - and I'm so glad you are JC negative... :-)

Talk to you soon,
Rita

[Jacksmom516]

Thank you so much for sharing how you and your neuro came to this decision.  Choosing a dmd is not easy nor can I imagine changing one is either.  Keep us posted on how it goes with the infusions and from all I have read here and other places being aggressive with this disease is the way to go cause she sure isn't gonna lay down and just hang out if we do nothing!

Best of luck and keeping good thoughts for you on Wednesday!

Tracy

[tjlmoo]

I'll be lifting up prayers for you. Wishing you the best of great results to come from this.Trusting in His love and guidance.May the Lord bless you.

Sarah, the same is wished for you too!

Grateful and blessed, T:)

[jujuminx]

Well said!  Your post is so well written and explains clearly everything that you have felt and thought. I so appreciate you sharing the good, the bad and the inbetween.

All of us need to learn from your experience (if we haven't already) that like MS, our dmd's can change unexpectedly.  Who knows why our bodies react the way they do, but they do and we must deal with those changes.

Loved your analogy about breaking up with the boyfriend. I hope that if and when the time comes for me face the same breakup situation you just went through, I can do it with at much thoughtfulness.

Thanks for sharing.

Julie

[anon07072023]

I'm glad that you waited to share this with us until you and your neuro made this decision together. What a wise move on your part.  And now we have free reign to discuss it...  :-)  

My neuro had previously discussed perhaps switching from Copaxone to something else. As she was saying it, all I could hear is the typical scary movie background music in my head.  haha.  The thought of it does make me a little nervous. And like you, I would never go on Gilenya.
I know several people on this forum are on Tysabri.  And to tell you the truth, I really know ABSOLUTELY nothing about it - unfortunately.
Well, I guess now's my chance to find out at least a little bit about it.

I hope that you do really well on it.  It's extremely re-assuring to know that there are no documented cases of PML in people who are JC Virus negative.  So....there is a good start already for you.

Please let us know how it all goes.
Take care,
Kelly  

[hbananas]

Thank you for sharing all the history and reasoning that went into your decision.  You explained things very well, and I'm sure others who are at the same crossroads will benefit from your wisdom.

[Dagun]

Good for you Lulu, making this important desicion regarding your health. Taking the time to think and figure things out, with all you´ve been reading for so many years, you would know what is best for you.
Good luck with it both Lulu and Sarah.

My best,
Dagun

[Starryeyes2]

You're in my thoughts and prayers Lulu and Sarah.

Hugs
Kristi

[Sidesteps]

Lulu - I met with my sisters best-friend from High School on Sunday evening. She was diagnosed I believe about 8 to 10 years ago. What a blessing to talk with her!

Anyhoo--- I did not realize but she is a taking Tysabri. Her Neuro, also feels strongly about treating this disease aggressively and they opted to take this treatment plan after struggles with Copaxone. She is JC negative as well and had a wealth of information for me. She loves Tysabri. I could see it in her eyes and she seems to be tolerating it very well.

I wish you well and will keep you in my thoughts. Sending you (both) prayers for peace in knowing you made the right decision as well as knowing that you are not alone in your walk.

[supermum_ms]

I truely think its wonderful that you keep on fighting the way you do, smart lady me thinks!

I'll be thinking of you................JJ

[mo0427]

Thank you, I actually was depressed a little today. The company Avonex called today abt me switching. I cried bcuz I didn't want drugs anymore. It's been a month and a half since I departed ways with Rebif. But you made my prospective different. I may want to give it a try

[HokeyP]

All the best to you on your new adventure ( I prefer to call these things "adventures", it just sounds better than treatment )

Pam

[doublevision1]

Lulu & Sarah - all the best to both of you as you embark on Tysabri.  It has some impressive results and it's encouraging that there are other options when one or another treatment isn't the right one for us.

[maxthecat43]

Hi Lulu,

This is Tammy- I had to open a new account, until I can figure out how to get my account back.  

I am glad you took the time to think, and do research.  I am sure you'll do great.  Cosmobirdy has been taking Tysabri infusions for quite some time, and she seems to do well on it.  I also have a friend that recommends Tysabri.  

Thank you for sharing this, as well as your decision making process.  
Tammy

[heartfelt77]

  Wishing u the very best Lu.  You will get through this also u are a very strong woman.   You can bet it.  I will be thinking of you and I'm sure that u made the right decision for your body.

Bless your heart to take the time to share this with us.....  Thanks for sharing.

  Hugs
      Misty

[tingletingle]

Hi Lu,

You are a really great role model for how to approach and execute a major life decision. I love all the research you've done to pull together your reasoning. Then you shared the 'what' and the 'why' logically for those nearest and dearest to understand.  The great thing about building the strong case for change is that you are forearmed to fight the little voice in your head or certain people who then say 'are you sure you're doing the right thing?'

Good on you. Wishing you all the very best.

Blessings
Alex