Today, overwhelming fatigue has settled in - the kind where I'm trying to read new blog postings and I can't focus on the screen or even keep my eyes fully open. And I even slept a full night, waking only once around 5:30am to visit the bathroom. So today's post will be brief and didn't require any extra research but it still presents an important topic to discuss.
Have you ever skipped a day of injecting your chosen DMD? What if you skipped a week? and that week turned into two or three? Have you ever wondered if the DMDs really made a difference?
Well, I have to be frank and admit that at the beginning of February when I was caring for my dying cat, I didn't shower every day. If I didn't shower, I didn't take my Copaxone like a good little MS patient. My regular morning routine is wash my face, put in my contacts, brush my teeth, shower, self-inject, dress. I had many days which I skipped many of those steps. Do I think that this had an influence on my recent relapse (which was improving but now seems to be regressing)? It very well might have in addition to the added emotional stress of the events.
Just yesterday fellow MS blogger, Jenn, discussed insurance changes and the increased cost she will be facing to get her hands on Copaxone. She also tells of having skipped days and even stopping injections altogether not long ago. AND she is experiencing a relapse after MRIs only a month ago showed no new lesions since her diagnosis last summer.
Is there a relationship between irregular DMD usage and relapse rates? I don't have a definitive answer.
Then, Stu shares his personal story: "My Hiatus from My MS Medication - The Pros and Cons - A Valuable Lesson Learned." It is a worthy read, providing food for thought regarding the effects of the disease-modifying medications.
What are you thoughts? Have you ever skipped injection days? If so, why and did you experience any consequences?
I take Avonex and I have ever skipped injection by a week. My shots are weekly so having missed on injection did affect my MS mildly. However I must say, skipping does have some affects which I have experienced without having an injection.
ReplyDeleteTherefore, I do not like skipping and I am thankful that I am taking once a week injections.
Like Jim, I am on Avonex and never missed an injection by a week. I have moved it to a day before or a day after on a few occasions, and once forgot for a day.....
ReplyDeleteS.
I took Copaxone daily for 5 years, then 4x/week as indntions in skin got so bad, then about a year ago I stopped altogether for a month. No change whatsoever. My neuro said, but later denied she said it "Well, your system has ALREADY been modified." (I told her my partner was becoming weaker and unable o help me inject, could I stop?) Now, a year ago, new neuro suggested I go on Novantrone,"To keep you where you are." I asked what would I do after I could no longer take that? She said, "Copaxone." That made NO sense to me. So...I decided to just go back on Copaxone, then thought about both of them and realized they have no clue. So, I stopped totally over 6 months now. I go a cold, no relapse, in fact I haven't felt this good in years. Do these drugs do anything? They have modified my immune system in a way NOBODY knows long term, for good or bad. NOW Copaxone changed their side effects sheet to include that the injecion indentions will be permanent. Read the small paper each time, they change it wth NO warning or explaination. Decision: to each his own,only time has the answers we seek.
ReplyDeleteI skipped MANY days, many years, with no consequences. Would an MRI showed atrophy? Holes? Maybe. But after reading many MS blogs, newbies have that ANYWAY, so...1-5yrs, I see pattern, 5-10, 10-15, 15-20, reading MS blogs, people on drugs or off, end up statistically (some do better/some do worse) the exact same place. I glady await, and alwaays ask, anyone to prove me wrong. After 5 years of asking, no one has.
ReplyDeleteYou know being my own guinea pig I have found the same thing. Beginning to think that Western medicine is garbage. I've been on copaxone then tysabri then copaxone again. Still trying to find benefit. From time to time I've taken vacations From copaxone with no diffrence
DeleteI am new to MS world. Its been 5 months of taking Avonex every weekend. Once i missed my dose because i didnt had money to do payments for these expensive injections. I keep reading about MS. I have started believing that my health can be better without injection. Infact every weekend injection, followed by body pain, headache and fever leave me into some kind of physiological sadness. Everyone around me gets so panic, if i talk to stop taking injection. I feel its waste. These drugs are just money making machine.
DeleteHope you are feeling better :)
ReplyDeleteHey, Lisa!
ReplyDeleteI'm really just stopping to comment here to say "hello" and thank you for YOUR comment today on that lunatic's blog, BrainCheese... :-) It gave me a much needed smile. I'm unfortunately in a bit of a schedule/health pickle right now and not able to troll the blogs as I would like.
As far as stopping/skipping a DMD...I've been on 'em all...I've had relapses while on the DMD's, relapses while off the DMD's, enhancing lesions while on them and off them. I don't think I'm a good "case study" for ANYONE, frankly! LOL My best "brains" were seen while on Avonex, which I never took regularly because of my work schedule...but I only missed DAYS, not weeks of the drug. MRI's remained pretty clear for almost a year. Too bad it eventually made me so sick I could no longer take it. No words of wisdom here...
Linda D. in Seattle
i can't really comment too much about this as i am not on any of the MS drugs yet. i do know our friend bubbie went off her rebif i think....and i think she said she is doing well. i just read and listen. seems that if someone hits upon a drug which really helps them then coming off of it poses some risks. but if the drug isn't helping much anyways then...logically it doesn't hurt to go off of it.
ReplyDeletehey thanks for all your comments and support lately. i really appreciate it. just trying to get my sea legs here and catch up with you guys. i have missed you!
oh and off topic here but wow! your blog looks really pretty...love what you have done to it having the three columns...very clean and fresh feel to it.
ReplyDeleteI was on Copaxone for 8 years on and off. The first time I quit injecting was after my father died of cancer after being misdiagnosed and not receiving treatment until it was too late.
ReplyDeleteI got fed up with western medicine altogether and put down the needles in disgust.
Then I started having relapses on a regular basis but refused to believe Copaxone could have prevented them. After all, I had relapses when I was faithful about the shots, too, just not so many.
My mom found out I had dropped the meds and bugged me into getting back on them. Then in 2005 my neuro had a stroke and I was suddenly doctorless. I didn't know a PCP could prescribe it, so I quit my meds again.
I found my new doctor in 2007 and he got me on the FTY720 study where I am either getting the real pill or the real Avonex shot -- no placebo.
For the previous 2 years I was having relapses every 3 months like clockwork. Unrelenting, exhausting relapses.
When I got my first dose of Fingolimod I was told that if I missed 8 consecutive doses I would have to start over and be monitored for my first dose again since it initially causes a drop in heart rate from which you recover after the first dose.
That right there is enough to make me faithful to my meds.
And the good news is: no relapse in nearly 11 months now. So I am a firm believer that the meds DO work. I did my experiment and I'm done investigating.
They'll only get my Fingolimod bottle from me when they pry it from my cold dead hand.
I was diagnosed the exact same month Betaseron was released. I started right away and continued on that for two years, then Avonex for two more, and then Copaxone off and on for the next three years.
ReplyDeleteEvery case is different, in my case I have not noticed a whole lot of difference. In one year I will have insurance that covers MS (Huzzah!) and when that takes effect I have wondered if I will go back on the shots. Right now, I honestly don't know if I would.
My personal uneducated guess is that missing a few doses will prob. not make a diff. but missing a lot of doses in a row, very well may.
ReplyDeleteI am convinced because i had not taken mine for like 2 mos, that is why I had the relapse. Before that, when I was faithful to Copaxone I had no progression or relapses for 10 mos. UGH!!!
I am afraid to take it, gotta love the fine print, so I didn't much care to take it anyhow, and then going thru my granny's death in Feb. and issues with my son shortly thereafter I just let it all go, I didn't care, and wasn't convinced I needed it anyhow
Now, I will have to confess all of this in the neuro office if he says we need to change meds...because it's my fault, not the meds, since i had stopped them....aargh!!
Oh Jenn, I didn't realize that your Granny died in February. The emotional stress alone could have contributed to the relapse. But I agree that 'confessing' to the doc is never a favorite thing to do during an office visit.
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