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Plegridy - 6+ months later

Sep 12, 2016 - 1 comments

I was Dx'd with RRMS on November 18, 2015 (yes, I remember the exact date that it became official) and began the starter pack of Plegridy in early February, 2016. As of today, I've taken 14 full strength injections over 6.5 months.

THE GOOD NEWS: Plegridy seems to be doing it's thing. I had full brain, c-spine, and t-spine scans and blood work done in late August. Bottom line is no changes. That means no new lesions and therefore, I've not had any relapses now in a year. My last major relapse was almost exactly 1 year ago today.

THE BAD NEWS: I was adjusting to the injections, but seem to have gone in reverse. The side effects take me out of life for at least 1 day every two weeks, and I now can add nausea to the list of rather unpleasant feelings this drug brings about. I am not taking NEARLY the quantity of OTC meds to counteract the side effects, so that is good and means that things have certainly improved. Just not enough.

THE WHINY NEWS: I am left wondering if I would have fared just as well without this beastly drug since none of my lesions have shrunk. I've left my career of 23 years to have a break in life & to try to reduce stress. It started off with me feeling amazing (and the 2 good injections) and now that I'm back into job-seeker mode, I am feeling pretty rotten most days. I push through. I'm mobile. I don't drop things ALL the time. I can type again. My vision is mostly fine. And I'm learning techniques to deal with my sensory overload issues. So really, I have little to complain about. Yet, I can't help but feel like this drug robs me of my quality of life...assuming my quality of life wouldn't deteriorate without it.

I hate being on these drugs. It's whiny, I know. Those of you Dx'd before there were drugs, or prior to there being multiple options for drugs, have some choice words for me I am sure. Those of you with significant disability because of this illness & wishing there were meds to help slow it down would have some eye-opening words for me I am sure. And you would be right and justified.

Regardless, I am really struggling to accept that I have to give up every other weekend. Now - while I'm not working - I can at least inject on Thursday so my worst day is Friday while my kids are in school. Once I go back to work, not only will I choose to be away from them for 10+ hours every day; but I will also be unavailable to them one of the two days we are home together. And I haven't figured out what I will do if an interview falls on post-injection-Friday.

I will stick this out for another month to see if I can return to the minimal side effects I was experiencing just a month ago. If not, it's time to reconsider. After 8 months, I can at least say I gave it a good effort. Unfortunately my MS doc recommends Rebif (3x a week!) as my next course of action, or - if I want off interferons - Aubagio. I think I want off interferons...but I am not quite emotionally ready to start over again with a new drug that has a new set of crappy side effects. I guess that's a decision for another day.

CURRENT PLEGRIDY ROUTINE:

water, water, water - the day before, the day of, and two days after
If this gets skipped, expect the headache of my life - so bad, it brings me to tears

600mg Ibuprofin at 8pm on shot night
10pm injection & go to bed

600 mg Ibuprofin every 6 hours the next day
300mg Gabapentin before bed - and sometimes again 6 hours later

400 mg Ibuprofin as needed the following day
Gabapentin if needed before bed again


Cheryl

Edit: if you are reading this and can relate, I encourage you to watch the following. I stumbled upon it today, actually watched (ok...listened to) the entire thing, and found it so validating AND helpful.

https://m.youtube.com/watch?v=Q-eCY7rQNIA


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11079760 tn?1483386130
by cjtmn, Sep 12, 2016
If the link doesn't work, search YouTube for "Webinar: Adherence to Treatments in MS" by TheMSCenter

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