Category: Random Thoughts

EFFIN Side Effects

I spoke too soon…the side effects are not from the new drug (thank God!) – it’s the Spasticity medication.  I started in March at 10mg, 3x a day…I’ve slwoly increased the dosage and on Monday, it was increased to 20mg, 3x daily.  Well!  HMPH!!  I won’t bore u with the details, but suffice it to say that I had a rough Monday nite and I was going crazy!!!!  I had NO IDEA what the hell was going on!  Good thing that G had her thinking cap on and reminded me that the dosage of that drug was increased.  Prior to this I had no side effects.

We pulled out our  “medical degrees” (from the internet) and did the research and i as it turns out I was experiencing classic side effects!!  I must say that I was thrilled to finally understand what was going on and immediately contacted my Dr.’s office.  Just before I’d increased to 20, i was taking 15mg and that was tolerable AND i was benefitting from it (10 mg wasn’t doing shit for me).  They have taken me back down to 15 and I am happy to report that I had a good nite’s sleep last nite (I was worried at first, but that was totally uncalled for).

Not In My Head

I really am showing an improvement!!!  

A couple people who saw me this weekend mentioned that I am walking better!  I think too that the medication for the Spasticity is finally doing something as well because i noticed that i haven’t been very stiff lately either.  I eh go lie tho, sometimes i feel like a drug dealer/addict carrying around and popping all these pills when my various alarms go off.  But it’s all good…

Excitement!!!

So, yesterday I had to go back to the MS Center to get my lab results etc. to see if I qualified to go on the Tysabri.  I also had a dentist’s appt earlier in the morning.  I parked my car and spent most of the morning on my feet and then it HIT me…

THERE IS AN IMPROVEMENT!!!!!!!

WOW!!!  Could it really be?  Normally, when i walk to my dentist’s office; i struggle (i have to park on the street blah blah blah)…again, normally after going to his office and going somewhere else, I would REALLY be struggling.  I got home after all my appts. and I was still walking as close to normal as i have in months!!!  My feet weren’t dragging as i took steps and I was actually walking “fast”.  A friend of mine saw me and he could actually tell that there is a remarkable difference…No side effects thus far either!!!!  I know that it’s early, so i don’t want to get my hopes up too high…but…

anyhoo…so the doctor who saw me today said to me, “you’re in perfect health except for this blasted neurological disease eh!”.  I prefer to use some other choice words to describe the MS, but hey…So…what does this mean?  Now i have to play the waiting game (as usual).  Someone from the center is going to call me after talking to my insurance company (ugh!) to tell me my copay and set up an appt. for my 1st infusion of Tysabri.

I cannot tell a lie…even though this treatment has this awful potential side effect, I CANNOT WAIT to stop taking the stupid ass daily shot!!! 🙂

A Lil Bit of Knowledge

“They” say that ah lil knowledge is a helluva ting.  I’ve been on “patientslikeme” more than ever this week.  I’m on the verge of stopping that in its tracks.  Quite a few people are on Ampyra or the 4-AP form of the drug.  I’m reading all their stories (good and bad; mostly good) and i can’t help but wonder “what’s in store for me”?  It’s been 2 1/2 days…If I’m to be honest, I have no idea if i see a difference or not.  In the back of my mind, I keep wondering if I’ll have any side effects and what they might be.

As i mentioned most of the stories have been good, but as usual, some of the side effects appear to be more of a pain in the ass than anything.  I’ve said this before and I’ll say it again, “one day someone needs to manufacture a drug that does ONLY what it’s supposed to do and NOTHING more!”

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