Tysabri is a dream come true for many individuals with Multiple Sclerosis. Personally, I have opted to take Gilenya (for now), but Tysabri was very tempting when I considered my options after it became apparent that Rebif would not work out for me any longer. However, along with Tysabri’s side effects comes one very sinister danger: PML. One patient on Gilenya has been diagnosed with PML, and it can happen to anyone whether or not they have MS. Knowing that medication (especially newer medications) may bring a risk of PML has frightened us all.
Cog Fog probably started sneaking up on you years before your MS diagnosis. Multiple Sclerosis alone is challenging, but Multiple Sclerosis with Brain Fog involves a totally different set of problems.
“Brain Fog” is a term generally used to describe the confusion, disorientation, general grogginess, and other issues resulting from cognitive dysfunction which commonly occurs with MS.
Happy anniversary to me! One year ago today I took my first dose of Gilenya. My heart rate waxed and waned that day, but in the 12 months since my life has steadily improved. I don’t expect roses today, but I am ecstatic that the drug is working for me. Until this time last year, I was in a pattern of a relapse every few months. I have now been relapse-free for one year and counting! So far, Gilenya results have been fantastic.
I began the journey secretly hopeful that I might be one of those few people who miraculously have so many of their lesions shrink and heal on Gilenya, but I was also reasonable. Most of my damage is well over a year old, and most neurologists will tell you to stop expecting any improvement after one year. May 5 2011, deep down I believed that I was stuck with what I had in spite of any contradictory fantasies.
I’ve written much about Gilenya, but it was not my first treatment. At the time of my diagnosis, Rebif (Interferon Beta 1-A) was really the top drug. Tysabri was the latest thing, but it had only just returned to the market after being yanked so my neurologist avoided prescribing it. In my post-diagnosis panic I felt adrift – unable to make a choice I let current trends determine my direction. If you are trying to choose a drug for MS, take a look at our guide to MS.
With 2 aunts successfully using Beta Seron, one might think that I would do well on interferon. However, my father was taken off Avonex and switched to Copaxone when his liver enzymes were too high to be safe. Rebif was a gamble, but my options were limited. The ease of pre-filled syringes and an auto-injector appealed to me over the possibility of mixing the medicine myself or using a larger needle.
“The drug is really quite a remarkably safe one for humans, although it is really quite a dangerous one for mice and they should not use it.” – J.W.D Henderson Director of the Bureau of Human Drugs, Health and Welfare, Canada. If you or a loved on has MS, then by now you have seen their pain and symptoms and have wondered about marijuana and Multiple Sclerosis.
Depending on who you ask, marijuana is either a cure-all for Multiple Sclerosis symptoms or a deadly drug that creates homeless crack addicts. Compassionate Care, Medicinal Cannabis, whatever you’d like to call it, is a hot-button issue that drives many otherwise sane people to extremes when discussed.
Surveys have shown that as many as 50% or as few as 16% of individuals diagnosed with MS already smoke cannabis even with its inherent legal risks. What does Marijuana do exactly that benefits a person with Multiple Sclerosis? And with a prescription THC pill and mouth spray out there, why choose to smoke it instead?
YES! At my Gilenya followup today I learned that blood tests confirm I can continue Gilenya!
Although my current neurologist isn’t a fan of letting his patients view any of their test results I stole my paperwork for a quick read during the 3 hour wait to see him.
What I read initially sent me into a panic.
- Page 1: My immune system has been decimated. I am one germ away from sudden death.
- Pages Everything Else: Greek.
Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are just not right for my body. Now that I have begun the drug I have started to focus on Gilenya side effects.
With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!
My first month on Gilenya has passed.
As a treatment, everything with Gilenya has been going well. Downsides are that I’m a bit drowsy sometimes and a bit cold (both seem so random). Sleep is very difficult. My skin is definitely more sensitive than usual, especially to sunlight which I didn’t think was possible.
Gilenya is rumored to possibly heal previous damage from MS attacks. For my part, I have no idea if Gilenya is healing any damage considering how badly I react to heat and this summer has been brutal.