I am officially ditching Gilenya.
(And changing to WHAT, you ask?? Argh.)
So as you may remember, my white cell count has been all over the place — mostly dangerously low — from about the 6 month point of Gilenya on. (I’m almost at 15 months.) I hadn’t really gotten sick… then this year. Sinus infection, a few stomach viruses (which they say aren’t related to MS drugs but what if they affect gut flora…) and that was just winter quarter. Since spring quarter started in April, I’ve been a mess of rolling colds and sinus infections. Three rounds of antibiotics this year, already.
I sent my doctor the “enough is enough” message last Friday. She had suggested Tysabri as my next drug to try… but at the rate I’m going (having had 3 drugs fail me in 3 1/2 years) I’m wary to try a drug that stays so long in my system. Something that’s a monthly infusion? If I have a side effect, it’ll take a long time to wear off.
I suggested I go back and try Rebif again. I don’t have that many sites where I can do sub-Q injections, but now that my 3 abdominal surgeries were 2 years ago, maybe I’m less sensitive there.
Earlier today, though, I started on my pity party of not being able to take any of the orals, which revolutionized MS treatment for all of us. I’m going back to the “stone age” of shooting myself up 3 times a week… like I used to do. I remember when my neuro started me on Rebif, and told me about these promising new orals that were in the pipeline (Gilenya which was almost approved, and the still-in-research “BG12” at the time, which is Tecfidera. Neither is tolerable for me.)
I know, I know… I should be happy there’s any medication I can take to slow down my disease progress, right? It makes traveling a pain, with an injectable, and I have at least one trip planned. I have to go back and check to make sure my hotels have refrigerators… sigh.
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Tags: frequent URI gilenya, gilenya, gilenya side effects, ms, multiple sclerosis, rebif, tecfidera, tysabri
Just when I think I’m so in touch with my body…
I had felt strong, with just the little bit of fatigue that I’d developed with MS (aside from the migraines and the nerve pain… but who knows the relation with that… I digress…)
So when my most recent MRI showed new disease activity, I was stunned… just onelesion in my pons (which is hardly anything for me, considering all of the lesions that I had already developed prior to diagnosis). And considering what I know about the pons — it’s a part of the brainstem which relays information between the brain and the spinal cord — symptoms may have been totally subtle. It didn’t make me feel suddenly more fatigued or uncoordinated… it’s just a new spot in my brain, that somehow showed up between a March 2014 MRI (my previous one) and my January 2016 MRI (my most recent one). Oddly, my current specialist told me that we should have an MRI “just in case” even though I hadn’t felt any new symptoms.
Within that nearly-two years, I changed medications three times (REbif side effects, Tecfidera was a nightmare, and insurance took forever to approve Gilenya) and had three major abdominal surgeries. Could it have happened then? Or… just some random cause? Who knows? I had quite a while off of meds, as well, during the changes.
In any case, I think this is a reason to go ahead with annual MRIs from now on — not that it would necessarily change anything.
And here I was, thinking that my disease was stable and hoping to get off of medication.
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Tags: gilenya, ms, ms flareup, multiple sclerosis, rebif, tecfidera
Have you heard about the Mediterranean Diet? (I’m sure most of you have…) Maybe you have, but you only have a vague idea of what it is.
It’s not really a “diet regimen” per se, but more a way of eating. Take a look at this food pyramid:
From this, you can get a good idea of how things are structured. Lots of plant foods. Meat only sometimes. Sweets occasionally. Calories and portions aren’t measured. (See? I told you it wasn’t a diet regimen.)
It’s how many of the old-school Mediterranean cultures have eaten for ages. And the thing is, this way of eating promotes good health all-around. It’s been associated with great cardiovascular health, for sure; but also reduced type 2 diabetes, and I’ve found preliminary articles associating this diet with reduced osteoporosis. It also really helps with sugar cravings!
Here’s the deal: for so long, we’ve reduced fat, fat, fat. But this diet includes all sorts of healthy fats and doesn’t restrict their portions. There was a study not too long ago that took older men, all who’d had heart attacks, split the group in half, put half on the standard low-fat American Heart Association diet and half on the Mediterranean (whole foods, but no limit to fat) diet — the Mediterranean group did so much better that they stopped the research study.
Why do I ramble on and on about this? Because… I’m sure that it may be a good thing for those of us with autoimmune disease. Yes, if you have the willpower to go all the way with the Wahls Protocol, go ahead — but I can’t restrict my diet in that way (and I also haven’t had enough symptoms to give myself motivation to do so). For now, my diet leans Mediterranean.
Not long ago, I thought… there must be some food bloggers who write about the Mediterranean diet, so we can all share recipes, right? … Right????? Well….. ends up not really. Sad.
So perhaps I’ll end up posting some Mediterranean (healthy, following the pyramid, not those “occasional treats”) recipes here, to share with everyone. Because I already have some! Of course, there are the standards: baked fish with lemon, steamed broccoli, etc etc but sometimes we want something a little more exciting, right?
Onward! Or maybe… salud!
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Tags: autoimmune disease, diet for autoimmune disease, diet for health, mediterranean diet, mediterranean diet recipes, ms, multiple sclerosis
Last year, I had a traumatic medical experience. It is only now that I am realizing how the trauma is affecting me mentally — affecting my quality of life. I hadn’t realized until recently that I had literally developed post-traumatic stress disorder as a result.
I may have written about it here — I can’t recall. Last July (it was a week before my trip to the Balkans, in fact) I had a bad migraine that would not resolve itself at home or at Urgent Care. They sent me to the ER.
I’m used to IVs and medications (10 surgeries over my lifetime, after all) but what happened at that visit changed my life forever… I was given Reglan, which is a stomach motility drug that is used off-label for pain (or maybe more officially? I don’t touch the stuff anymore). I could’ve sworn that I’d had it during my hospital visits for my abdominal surgeries with no ill effects.
Immediately after IV push, I felt a chilling sensation all around my neck and throat… and I had no airway for what felt like 15 seconds. (It was probably shorter than that, but trauma changes the passage of time.) My throat relaxed (so, it was a spasm and not an immediate allergic reaction) and I could breathe again, but my heart immediately started racing once the nurses left the room. They didn’t seem to worry, given that my O2 sat was OK — but “just take deep breaths” was far from comforting advice at the time. Somehow, I was able to calm down.
Then, I lay there on the hospital bed and underwent uncontrollable spasms everywhere. My husband got the nurse, and I could hardly talk to her, since my mouth and jaw were spasming. “Oh, they’ll eventually go away in a while…” as my body writhed uncontrollably. I finally convinced them to give me some xanax. (I have not been back to this hospital since. Their customer service was lacking, to say the least.)
And then, the nurses explain that it was a nervous system reaction that about 5% of the population has to the medication (yep, not allergic), that it often doesn’t happen on first exposure, and that when I get this drug again, I know what to expect.
Seriously?!?!?!? Who in their right minds after going through THAT would even consider that drug again? No, I didn’t die, but I sure as hell thought I was going to. And – I have an unpredictable nervous system disorder…
Moving forward, moving on from there (the worst thing is that my headache didn’t even entirely resolve!): toward the end of last year, I had a stomach flareup and needed IV fluids. No big deal, right? Just saline. But… when they started the saline drip — cold saline — I felt that cold sensation up my neck, as it filled my carotid artery. It wasn’t the same as that dreadful day, but similar enough that I had my eye on the tech the whole time. “It’s just saline…” they kept saying. And I freaked out. Not enough to pull the IV, but I was tense the entire time I was getting fluids.
At that point, I thought I might have a problem. But I didn’t address it.
Earlier this year, I had neurologists try to prescribe me new preventives for my migraines. Before I even filled the prescription, I spent hours on The Google doing my research about interactions, potential side effects, wondering if this thing would kill me.
And the only one I filled was the Cymbalta, last week, after admitting my anxiety/PTSD to my doctor. (I figured it was time for me to take baby steps.)
The good news is that when needles take fluids out of me (e.g. blood draw), I’m totally fine. It’s the fluid going into me — a foreign feeling, systemically — that scares the bejeezus out of me. And considering all of the neuro meds I pump into myself, as well as having experienced a bad reaction, I understandably wig out.
I am in the process of making an appointment with a counselor about all of this. It’s hard for science-brain to wrap around counseling, because even though it’s nice for someone to say “there there, I understand, I support you” — that doesn’t help me when push comes to shove. It will be interesting to see what steps I physically have to take to overcome this.
And, with the passage of more time, the more the memory fades. The first few months, I could remember every split second of the reaction… and less so, now.
Thanks for “listening”.
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Tags: extrapyramidal reaction, ms, ms medication issues, multiple sclerosis, ptsd, reglan, reglan reaction
Not long ago, my MS doctor suggested I try low-dose cymbalta for my migraines and pain in general. (Cymbalta is an anti-depressant, and SSRI/SNRIs are often used for nerve pain. I’d tried one before topiramate, and my body has adapted so well to my migraine meds that I need to up the ante a bit, I suppose…)
I hate adding more meds to the mix. Anti-depressants have so many side effects, and they interact with so many things. Yet, I found myself begrudgingly saying, a few days ago, that I’d give it a try.
I took my first pill yesterday morning, and a few hours later (it’s a delayed-release so that stomach acids won’t eat it up) I felt jittery and palpitations. I went to the gym a little after, and had to hold on after each set to avoid passing out…
What do you know — major side effects involve lowering of blood pressure, and the insert says to slowly change between seated and standing, that it may even take up to a few minutes, to avoid fainting.
I said “never again” after the one pill; the doctor wants me to keep on trying, that maybe the feeling will taper off. I’ve had enough bad medication side effects that I don’t know that I even want to deal with the first few days.
Has anyone had a similar experience with Cymbalta? I really don’t want to have to adapt my workouts (i.e. lift a lot less and potentially lose a lot of strength due to MS) to deal with the side effects of a medication that may or may not help my chronic migraines.
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Tags: chronic migraine, chronic pain, chronic pain relief, cymbalta, exercise, medication side effects, ms, multiple sclerosis
I saw an ad recently for the movie I always wanted to make… here it is:
Unfortunately this isn’t playing anywhere near me, but maybe I’ll get the chance to see it at some point?
This film portrays the lives of four active people who continued with their sports even after their MS diagnosis. The filmmaker was discouraged after her diagnosis, because the disease is typically depicted in the media as extremely debilitating. Thing is, while it unfortunately may be for some people, this isn’t 100% of the case. There are many of us with MS who continue to be active. (Sadly, I am far more tired than I used to be, but I do my best.)
This is the project I’ve always wanted to create. I guess there’s nothing saying that I can’t still do it in book form (which was my backup, not having any film documentary skills…)
If you’re in the DC area, go see this film!
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Tags: athletes with MS, exercise, ms, ms awareness, ms film, multiple sclerosis
So… I’m drinking the kool-aid. I never thought I’d participate in so many MS events each year, but I’m feeling the need to raise as much for research as possible, considering a) all I’ve felt in terms of drug side-effects this tear and b) the MS fatigue I’ve noticed recently. I’m pouring efforts toward MS.
I know that many who read this also have MS, and may also be doing a walk near them (Thank you!!!) but if you have even a dollar or two… I would much appreciate it. I don’t have any donation minimum, so I don’t need to meet any goals, yet adding some cash to what I already build with Dance MS each year would feel great.
Many of you know that I live in Seattle, so you might be thinking — Wenatchee? Huh? Ends up the Seattle events fall on my husband’s birthday, and I’d like to give him a birthday option other than an MS fundraiser with me. Besides, I so rarely get east of the Cascades…
Here’s the link to my donation site. Thank you so much!
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Tags: ms, MS drug side effects, multiple sclerosis, Walk MS, Walk MS donation, Walk MS Wenatchee