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!

[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

[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

[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.

[HokeyP]

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

Pam

[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

[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