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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


Plegridy: 3.5 Hours to Side Effects

May 20, 2016 - 6 comments

That's how long it takes for my Plegridy side effects to kick in. I'm working on moving my injection day back by 24 hours, so am enduring taking this shot during the day today. I went into this one feeling pretty awful and knew I'd get to be awake for more of it than I would like, so my expectations were pretty low.

The constant for me is the incredible spine pain. It starts below my shoulder blades - pretty much mid-back and then slowly starts to scrape up my spine until it reaches the base of my head. I'm also noticing a lot of jaw pain and the headaches go along with it, too.

I have switched from Aleve (naproxyn) to Advil (ibuprofen) this time because I woke with the most massively painful headache this morning. Almost like the ice pick headaches that preceded my last round of Abducen's, except it didn't flash in and out - it just stayed. I couldn't see clearly out of my left eye. So, I had to make a choice - try to quiet the headache with Ibuprofen or pre-medicate with Aleve to help with my post-injection body aches & pains. I chose to address the headache & crossed my fingers it wouldn't mean a day of misery for me. It's too late to switch back over until tonight - because the Aleve is a 12-hour med, my next dose would mean setting an alarm clock in the middle of the night to ensure I'm able to sleep. So, I will switch over tonight and hope the headaches subside.

I have mentioned this before, but for anyone who is reading this thinking of starting Plegridy, I think it is worth mentioning again. Plegridy makes my MS ANGRY! My symptoms flare up royally and I experience more pain and heaviness on my right side where all of my spinal lesions reside than on my left. It is really weird. I asked the specialty pharmacist about it and my MS neuro. Neither had heard of this. So maybe it is just me!

I had a reasonably good experience 2 weeks ago with my injection. I stayed active & was able to really push through the side effects. I felt tired, run down, heavy; but I didn't experience the pain I'm having again now. My fingers are crossed that this injection joy is simply a combination of factors: run down, not enough water today, Advil instead of Aleve, and the AM injection instead of PM. This is my 7th full dose injection. I need to get through 6 more before I will get to see via MRI if this is doing anything at all for me. I hate to wish away time, but late August cannot come fast enough!!

Signed,
Cheryl who is thinking this better be worth it!!!

5 Months In...and still a bit of a mess

Apr 27, 2016 - 7 comments

April 18 was my 5-month anniversary of my RRMS diagnosis. I've also been on Plegridy now for almost 3 months, which continues to be a massive adjustment and source of frustration. I'm sticking it out for another month, but I may just have to kick beta interferons to the curb.

In fact, I find myself fighting hard to just ignore everything that has happened since September 2014. I'm really (I mean REALLY) good at denial. I find I don't participate on the boards very often. My experience is new so I have little to offer others by the way of advice AND my remaining questions (I think) probably come down to personal choices vs. advice or experience. I'm also on the verge of giving up on my DMD - and frankly, I don't want to take a different one. So, if I skip taking the meds and I stop checking the boards and I just go back to trying to live a normal life without illness...can I live like none of this ever happened? It was 7 years in between bouts of double vision. Maybe I can get another 7 symptom-free? Or now that we see this thing on the MRIs and have 14 o-bands swimming around in my CSF, does everything really have to change? Do those physical signs mean progression that I cannot un-know or un-do? But what if I just start trying to live every day as a happy, healthy, unsick person? Can I "fake it til I make it?"

I read so many stories about people who are managing their MS through diet and lifestyle changes alone. I don't know if they continue to be monitored by a neurologist or not. But they claim to feel better than ever. Guess what? I want that, too. Who on this board doesn't want that?

I post this for everyone out there still working to accept this illness. It is not an easy road and with so much unknown, doubts are going to plague us about finding the right course of action to manage this thing. I'm not there yet - still smack in the middle of Year 1 - but I'm working through it. Nothing with my MS has been fast. I guess acceptance won't be either.

Back in the saddle again...Plegridy Dose #4 (2nd full)

Mar 28, 2016 - 3 comments

First, Arizona was amazing! We were blessed with great weather, easy traveling, and most of all, a body that mostly cooperated with me. It was the perfect balance of pushing myself physically, then lots of sitting/driving, which allowed for recovery. I swam 5 of the 7 days, which felt wonderful. My legs fatigued quite quickly, though, and I hated the feeling of having cement tree trunks for legs when I got out of the pool. Nonetheless, worth it.

We landed back home around noon on Friday and I really found myself struggling to wrap my head around taking my injection. For an entire week, other than the presence of physical symptoms, I didn't plan my life around MS. Coming home was a mind-bender for sure - it took me until about 10:30 PM to finally take the injection.

I slept 12 hours that night, which was beautiful. I was going on almost no sleep from the previous night due to a sad daughter who was ready to come home and a 4 AM wake-up call to get to the airport, so the sleep was more than welcome (thank you, hubby!). For the most part, I felt OK on Saturday. I managed with minimal NSAID usage this time, no Gabapentin, and just generally takin' it easy.

I slept well Saturday night - although only about 6 hours enough due to Easter preparations - and made it through Sunday without any additional pain meds. I could feel the effects creeping in by nightfall, and had a difficult time falling asleep. Then came the dreaded aches, pains, and nausea. So, almost no sleep last night. Around 4 AM I begrudgingly took 220 mg Naproxyn (Aleve).

Today, I'm still dealing with slight side effects, but not enough to keep me home from work (thankfully). So, I feel encouraged again that I'm adjusting to this medication much better than many others I've read about. I have a follow-up with my neuro tomorrow (first one since Dx) and will discuss this awful denial I am experiencing. Maybe she can help me to understand that this is real....

Details for Dose #4 (2nd full dose):

Friday, 9 PM - 440 mg Naproxyn (Aleve)
Friday, 10:30 PM - Injection
Slept like a rock; side effects did not impact sleep (helps to be incredibly over-tired)

Sat, 11 AM - 220 mg Naproxyn (Aleve)
Side effects: Pain in my spine from mid-back to neck, jaw pain, increased Sx, headache, fatigue
By 8 PM I was incredibly fatigued, shaking, cold & aching everywhere - took another 220 mg Naproxyn

Sun - no NSAIDs
Managed until the evening without pain
Overnight nausea & pain made it difficult to sleep - finally took 220 mg Aleve @ 4 AM
Worked to get enough water today (did not do well on Saturday)

Mon - fatigue (ummm...I haven't hardly slept!), the same back pain, & increased Sx on right side
Working on water in-take
I will re-dose with Aleve at dinnertime


The moral of the story: Stay on top of the NSAIDS! I think I was throwing a little hissy fit & just didn't want to do this for some reason. All in all, I really can't complain. Compared to doses 1 and 2, this was a breeze!