Of all the potential side effects the FTY720 could have had, this is the one that I spent the least time fretting over. Things like going blind worried me worse. Come to find out, maybe I should have just stocked up on vitamin C, Kleenex, and cough drops. This is getting ridiculous.
Before starting the trial I might have had one good head cold a year. I have a kid in grade school, so colds brought home from that seething pool of germs (the school, not my kid -- he's just the carrier) are to be expected.
This, however, is cold #4 since starting the trial 6 months ago. Enough already! I get the point. My important cold fighting part of my immune system is being sequestered in my lymph glands. Held back from fighting the good fight like I'm imagining they want to. I can just see the little tough guy T-cells banging on the lymph gland walls saying "Let me at 'em!! I'd give 'em what for if I could!"
All I know is that it seems like if someone sneezes in the same room I will have a head cold with raw throat, runny nose, fever and aches and pains within 24 hours. Never mind that theirs is only from allergies...my body doesn't seem to care. It's party central for all head cold germs apparently. "Hey! Party at my place -- my T-Cell parents are gone!"
At least having all these colds has done one good thing for me. With each new cold, my panic over the possibility of a new relapse being triggered has lessened. With the first cold I squinted my eyes shut tight, plugged my ears, and braced myself for the KABOOM! of a new relapse descending on me but, like a dud of a fire cracker...nothing.
I'm almost to the complacent point of thinking my MS attacks are a thing of the past. If I could trade numbness, burning pain, spasticity and loss of balance for a head cold once a month or so, then bring it ON! I'll gladly make one of those candy necklaces out of cough drops and buy some designer hankies if I could make a trade like that.
Of course I know it's just a matter of time and I will slide into an inevitable relapse, but for now denial is sweet. Before Fingolimod I didn't have the luxury of ever going long enough between relapses to build up a believable case of Denial.
So join me in a chorus of sneezes and coughs while we say the pledge of allegiance to Fingolimod. I'm hooked on the stuff as if it were cough medicine. Oh wait, it seems that's just what it is -- medicine that makes you cough! :-)
4 comments:
Hi J
I agree with you that if I had to choose between an ms relapse and a head-cold, I'd choose the head-cold every time.
I myself have been on the trials for a year now. In that time, if memory serves, I have only had one head-cold/ flu. It was a highly contagious one that the whole family got.
On the other hand, I have had two mini-relapses in that time that I treated. The first one doesn't really count, as I already had the relapse going into the trials. The second one wasn't severe, but as it was affecting sensation in my hands, I panicked and went for some steroid treatment.
The trials I am on have three arms: placebo, Fingolimod 1.25mg and Fingolimod 0.5mg. I am starting to suspect that I may be on the 0.5mg dosage. I've had no side-effects whatsoever, and while I have had a major reduction in relapses, I did still get one.
I'm finding it really interesting reading about your experiences.
You know what's my favourite? Popping that beautiful little pink capsule in the mornings. Viva Fingolimod!
Hi Maggie! Good to see you again!
I'm in the trial with .5 vs 1.25 vs Avonex and I'm starting to suspect I'm on the higher dose of the real thing (the 1.25) due to the head colds. Either that or I'm just having a bad year for being sick as a coincidence.
It's been 9 months (now that I count on my fingers) since my last relapse. The time is really flying by. I feel so normal it's scary.
I just tell myself that the morning stiffness and aches and pains are ones that any 47 year old is gonna feel. I agree...Viva Fingolimod!
Interesting...MS---all so interesting. I, in first years before DX, noticed MS symptoms and THEN a cold of sorts. I always was doing MS relapses in reverse of norm...Dr.s never did figure me out. (and I had a "world reknowned" neurologist.)
My very first attack came a couple weeks after a doozie of a stomach flu. And since then any time I get a cold, within a few weeks I have an attack...until this funky Fingolimod stuff.
You must have the rare Backwards MS or SM. LOL
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