DMD “Hell”

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I wasn’t sure what I was going to write about next  and then inspiration came to me in the form of a Facebook conversation with a friend. (Thank you, btw!! You know who you are; I don’t want to add anyone’s names to my blog unless I get their permission first so for now, everyone except me – and I guess Bertha – will be designated with one or two letters and any professional titles, should they apply.  And yes, I am aware that I’m long-winded, but I’m at least a little entertaining, right?)

Anywho… I was giving this friend a recap of all the MS DMDs (disease-modifying drugs) I’ve tried because it has been like HELL to find a good one for me since I was diagnosed, and I figured today would be a great reminder for myself as well, so without further ado, I present to you:

MY HISTORY WITH MS DMDs

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Ok, so we’ve already established I was diagnosed: April 7, 2009

  • Rebif (aka interferon beta-1a), summer 2009 – December 2009, self-injected shots 3 times weekly (the needle kind, not the alcoholic fun kind)
    • Was required to try (but be unsuccessful with) some other med over my first preference (shown second) to be approved for #2;
    • Side effects I remember: body aches as if I had the flu I every single day – and not just on days I had to inject (just happened to be worst on injection days) and soreness at injection sites;
    • Injection sites rotated with each injection: backs of arms, lower back/hip, stomach, & thighs (so basically where all my fat is padding me quite well –meh).
  • Tysabri (aka natalizumab), January 2010 – May 2010, IV medication, administered by nurses
    • This was my most desired MS therapy at the time, as it required the least amount of energy and time (monthly infusion I received at Noran Clinic’s infusion center);
    • Side effects I remember: at first, slightly harder to catch my breath / take in large breaths and tightness in my chest for about 2-3 days in the first month & increased almost exponentially in length of duration of symptoms  with each and every month’s infusion (so, for FIVE months!!);
    • I loved getting to take a DMD for one appointment each month, because it fit well with my lifestyle (which really hasn’t changed much over the years), but I’m glad Dr. D finally took me off because I am allergic!! (I still don’t understand why he didn’t figure that out sooner – I reported it every month!);
    • Because of my allergy, I spent the rest of 2010 letting the Tysabri flush from my system with daily puffs of an Advair inhaler and also had to use an albuterol inhaler for the first and ONLY time in my life before I could even attempt another DMD!  It took longer to get that flushed out than it did in all the hours spent at Noran’s infusion center receiving the infusions, when compared in total hours per month!
  • Copaxone (aka glatiramer acetate): tail end of 2010 or early 2011 – around 2013? (I know it was for at least 18 months), self-injected shots, once daily
    • Since I was already quite used to administering self-injected shots by this time, I figured I could handle rotating the sites on my body again, only this time was easier because it was done daily (and I wouldn’t have to remember which days to inject and which days to skip completely);
    • Side effects I remember: mostly just annoyed with the more painful injection sites for me(backs of arms and in thighs), but I got good at skipping one or another when I had too many red bumps from the daily injections (& I’ll admit, I stopped the arms before too long because I was literally crying from the pain that remained on those sore red bumps);
    • Unfortunately, I thought I was doing great on the Copaxone, but apparently I had too many exacerbations and too many new lesions in my MRIs for Dr. D to allow me to continue with Copaxone (though, this is around the time I start paying more attention to how we communicate at appointments because I began to get this nagging feeling from my gut that I couldn’t shake…I only wish I would’ve listened to my gut sooner than 2020, but I digress.).
  • Tecfidera (aka dimethyl fumarate): around 2013-14(?) with several restarts of it 2014 – 2017(ish), first (& only) oral medication I could try, twice daily (as close to 12 hrs apart was stressed to me several times throughout the years)
    • Looking back, I know I thought I preferred an oral medication, but truth be told, I am AWFUL at taking several doses of any one medication in a day, unless I can take them all at the same time – upon waking and as part of my bedtime routine (years of attempting to remember to physically ingest multiple medications to treat ongoing symptoms proved this to me, even with alarms, so please don’t tell me I didn’t struggle with it because that’s not even helpful at this point in time); 
    • Side effects I (clearly) remember: with each dose, I got the unfortunate red face and chest we affectionately call “flushing” in MS circles, like that somehow softens the blow of feeling like you are on fire while suffering hot flashes (while still likely too early for perimenopause or menopause) and the only source of relief came if I also took a Benadryl and an aspirin – with each dose – so I now could look forward to 6 more pills a day added to my 20+ daily pills to treat ongoing symptoms (I think at my highest daily total of pills & vitamins was around 32, if I remember correctly);
    • I decided to do my own research into alternative therapies and other DMDs to begin to look into other ways of being healthier and I was my own lab rat for a while – I went without the Tecfidera for close 18-24 months to see how much my lesions would progress, and that nagging feeling about my neurologist persisted (and got stronger).  I honestly felt better most days during that period – I had even lost 35-45 lbs. and was consistently exercising!

Now would be a great time to sidebar before I get into my soon-to-be fifth attempt with DMDs and tell you about those constant doubts I had been gradually allowing into my thoughts about Dr. D, and how it came to be that I (kinda) grew some cojones and asked for a referral to another MS specialist within the same clinic (except I used the wimpy, easy excuse in the end, that I needed a neurologist a little closer to home – which was true, but the “cop out” way out).

These doubts that had begun to creep into my consciousness were more like suspicions that Dr. D had some strong favoritism toward some of the DMDs, as in he appeared to have been stressing his recommendations of: Tysabri (yep, the miserable allergy-causing drug that felt like a lifetime of waiting for its lasting side effects to finally dwindle) and Tecfidera.  Yep, the pills I consistently (yet completely accidentally) missed – I could usually remember one dose per day for over half the month but that meant I was missing around 15-20 pills every single month!  Sadly, I only discovered my errors when the very nice Biogen staff would call and tell me it was time to order the next month’s supply and every month I was left bewildered to why they were calling already!

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I had also started noticing key phrases and repeated topics with Dr. D during my appointments with him (mostly during 2014 to 2016), but I was more carefully aware of the language we used with one other.  And when I focused more attention to our nonverbal cues in those appointments, I knew it was probably time to start researching other neurologists for another second opinion.  I was quickly losing faith in this man.  

It wasn’t until the winter of 2016 (I believe, perhaps early 2017) when I collected up the courage to call the Mayo Clinic group and schedule an appointment to see a neurologist who specialized in MS in my home state of Wisconsin, but the downfall was that it was 90 miles east of me – almost triple my drive to Noran! 

I liked the neurologist I saw in Eau Claire, but I wasn’t sure that would be the ideal solution for me because of the distance and I wasn’t always going to be healthy enough to drive myself. So  I went back to Dr. D (I just saw less of him, since thankfully Bertha was quite silenced for a nice long stretch).  Then some things happened at the end of 2017 that led to my request for a transfer with my national brand retail employer to the Kansas City metropolitan in March 2018 (and I don’t regret that for a moment, but that is for a much longer post another day altogether) and I had to find doctors in the state I resided. My adventures in KCMO unfortunately came to an end in September 2019, after only 18 months of living there, because most of 2019 was spent between medical leaves of absence due to what I shall now refer to as The Wrath of Bertha (or The Wrath, for short).

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I think now is a good stopping point for this post, as writing this post and getting it into my blog has taken far too long, due to some unexpected symptoms showed up – from a different diagnosis I had received back in my high school years – and almost immediately after I finished writing my rough draft, I spend 40 consecutive hours awake and with more energy than I think I’ve had in over a decade (possibly longer)!  My thoughts were all over the place and, although they were mostly just new ideas for the blog and several new topics I wanted to learn about on my self-guided daily education time, my brain finally wore me down enough to get some near coma like sleep – for 11 hours.

Though, the best silver lining I got out of that “manic episode” was when I awoke yesterday in the early morning (12:30 a.m.), I knew that getting out of the house awhile on a long drive would be the best thing for me.  I had some things I had collected together for a friend who has celiac disease (she can’t have gluten) and for one of my favorite cousin’s adorable kids, so I decided that a middle of the night drop off to their front doors would be great therapy for me.  I was 100% correct: I left my house and took my time, driving on cruise control at the posted speed limits along the way, all the while the popular Christian music I had been drawn to more lately cranked on my stereo.  God and I had the best four hour drive I have experienced in quite some time.  I was finally remembering to be completely present in the moment and was able to keep my thoughts focused on the task at hand.

Wishing you all the same comfort I got on my drive, because that… was blissful.

*Kelly Terese*

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