Since my last check in I have begun a new drug to treat my MS, Gilenya. After a few happy years on Tysabri my neurologist decided that my risk of PML was to great considering that I am JC positive. While I was ecstatic that I would no longer need to be infused for hours each month I was hesitant to leave the protection I believe Tysabri gave to me.
When I was in the middle of an exacerbation a few summers back it became obvious that Copaxone was not performing as expected and Avonex had already failed Tysabri aggressively stepped in and stopped the bleeding. 3 years later and I can’t complain, short of a Mono virus attack Tysabri was bullet proof. Don’t get me wrong when it came down to PML or a new drug the choice was pretty simple. But I do miss Tysabri?
How can you miss a treatment or have feelings for that matter? I will not miss getting jabbed or answering the questionnaire but I will miss meeting the people. Over the years I think I sat through about 40 treatments, some longer some shorter, but all were interesting in their own way. When I first started infusions I would check into the hospital and get admitted, my own room with a TV and bathroom, meals delivered and nurses that thought I was a local celebrity due to a paperwork error.
I met many people just starting their MS health care journey and I met people that had been on their journey for decades. We shared stories and knowledge, I taught and I learned.
You have a lot to live up to Gilenya.
Be a warrior today,
I have been on aminopyridine for over three years now. As per the advice of my doctor, I obtain this drug monthly from a private pay compounding pharmacy because the FDA approved brand, Ampyra, is not covered unless you are ambulatory. Until recently, I always vacillated back-and-forth on whether or not the drug was actually improving my upper body function.
My doctor increased my dosage from 15 mg daily to 25 mg daily about three months ago and my increased upper body strength and endurance has been surprisingly significant. I am now exercising about three times a week for 60 minutes each session.
A brief background on the drug: 4- AP/ 4- aminopyridine is prescribed for people with multiple sclerosis. It is a potassium channel blocker that can improve walking and other motor functions. There is a commercially available FDA approved version of 4-AP known as Ampyra. There are a number of side effects including but not limited to seizures. I have been very fortunate and have not experienced any side effects from this medication since I began taking it.
You are probably asking yourself, how can I be so convinced that the aminopyridine is actually working. What I know is that when I have gone off the medication for short periods of time, my upper body function has suffered. Of all of the medications that I have tried over the years to help control and even improve my MS, this one remains a staple in my arsenal.
Wishing you a Happy Spring,
P.S. A bit about me...I have been diagnosed with MS for over 20 years and am currently being treated for secondary progressive MS. I am married with a beautiful little boy and until recently worked full-time using both a manual wheelchair and at times a power chair. I battled stage III breast cancer and consider myself to be a survivor. I am grateful to be a part of this community and share my experiences with you and hope that in some small way they may be useful to you.
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