Showing posts with label tecfidera. Show all posts
Showing posts with label tecfidera. Show all posts

Monday, September 1, 2014

Quarterly Gratitudes from an MSer || Top Ten GOOD THINGS in my life right now

Burning Bush, September 1, 2014. 
Welcome to my front porch!
Plumbago blossoms

Wow, where did the summer go? Wait, it's still here. Sunny and beautiful in the Pacific Northwest and more to come. I love September.





1. I know, I am a broken record (and I'm antiquated too, since I'm using that phrase)... but I have amazing children. Beautiful, smart, strong, funny. Focusing on them means less time to focus on my MS.

2. I'm also gifted with some amazing friends. Not only do I feel like they are right there with me when I'm on a trip across the country (thanks to Facebook!), but sometimes I even run into them live and in person in faraway places (Loretta!) and that's a real pleasure. They are my major source of laughter, intellectual stimulation and advocacy.

Rose of Sharon

   3. I just spent 10 days in New York and I lost weight. 
   Not a lot. But enough that I can sigh with relief and 
   know I won't have yet another 5-10 pounds to add to 
   my list of things to take care of. It wasn't all hearts
   and flowers, though: the heat got to me on two 
   separate occasions, and I had a violent tremor 
   that I'm sure was my body's response to muggy high 
   heat and the stress of travel. But I'm feeling much 
   better now that I'm home. 
False spirea

4. A repeat from my last gratitude check in: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.

5. A shift in my schedule. With one kid off to college, it will be a little more quiet around here and a lot less busy (and with way less laundry to wash). I'm excited for my daughter and know these next few weeks without her will be spooky, but I'm grateful for a lighter load of parental duties at the home front. And she's gonna be just fine where she's at. I feel like I can really hunker down and get back to some meditation, yoga, walking, and even some trips to the gym, as well as eating better, drinking more water and just taking time to be with friends.

6. Loads of DVR recordings to catch up on. It's how I get my chores done. Old stuff, new stuff, movies. And (see #5) there's potentially more time for more books. I'm reading several right now in fits and starts. I'd like to make that more consistent. My fatigue is more or less under control, so it's doable.

7. I have a whole new pot of gold to develop into essays, stories, poems etc. thanks to time spent at a writer's conference in July and the purchase of numerous small journals which I have tucked into every nook and cranny so as to capture fleeting genius whenever it strikes. (Once captured, it may not be genius anymore, but that is beside the point!) I'm thinking about writing about my MS now, more formally, as well as other topics. 

Pansies popping!
8. My neighbors stepped up and helped my husband throw our annual neighborhood bash while I was out of town. Who can claim to have such awesome neighbors?? I've never known this kind of community, having moved so often as a kid. It's pure gold. I know that, were my MS to take a turn for the worst, my neighbors would be the first line to help out my family and I.

9. I planted my yard to be awesome in the fall. And it is. The false spireas and the plumbago are just absolutely gorgeous right now, as is the Rose of Sharon. New pansies are bursting from the pots as well and will keep doing so into the late fall. Burning bushes are tipped in red as well. Fall is here! Yay! MS has enhanced my appreciation for the little things: the flowers in the yard, the birdsong outside my bedroom window, the cool breeze through the trees, the brightness of stars outside the airplane window.

10. Recognition for my writing. I recently won a literary prize for an essay I published last spring. It came with some cash-money as well. It's no small thing to be validated in this way, and I can probably squeeze a whole year of encouragement out of that single attagirl. Again, like in #9, it's the small unexpected surprises of life that can keep a person moving forward.

Saturday, May 31, 2014

Gratitudes from an MSer: Top Ten GOOD THINGS in my life right now


I have had a rough couple of weeks, but at the same time, I have not been without some wonderful experiences as well. Time to look away from the train wreck that symbolizes what's been going on in my personal life since mid-May and focus on the great gifts crossing my path.

1. Great children who I don't need to babysit. I know, they are teenagers, but let's face it: most parents of teens are scared shitless every time their kids leave the house. On the other hand, I am perhaps the only parent who slept well last night while my senior was off to the prom in the Big City. You know, I must have raised her right because I did not feel the need to babysit her or make her accountable for her night or shadow her. I know lots of parents who did these things last night: chauffeuring, hanging out at the actual dance, as if by doing so that would mean a better prom for their kids? I don't know... maybe it's because they can't cut those apron ties, or maybe they can't trust their kids to "make good choices," or maybe they are fearful of that business of after parties... who knows? All I know is that I trust my kids and give them a long leash and they have yet to let me down. That's no small thing when you have a condition which generally worsens under the weight of stress.

2. Despite the aforementioned train wreck, I continue to be pleased with the results of my latest MRIs and the way Tecfidera is helping me out as a DMT. Unfortunately, the train wreck began the afternoon following the good news about my MS (non)progression, but I never had a chance to celebrate. Why turn that into a negative? I am planning a celebration of my first year anniversary of taking Tecfidera in June, because I know I have friends who will celebrate with me. Plan it and they will come.

3. Obviously, I have endless gratitude for my friends. My husband is hot/cold when it comes to being supportive, and my children have their own challenges; I can't ask them to do the emotional work of adults. My extended family is going through all kinds of turmoil (re: previously alluded to train wreck) so they can't be expected to hunker down with me. But my friends are always there for me. Always.

4. My job continues to give me a reason to get up in the morning. I just took a credentialing exam and think I might have passed. If so, I can broaden my sphere of influence in ways beyond my work in the lab and even get paid for it. Woohoo!

5. Great weather! I use sunshine as fuel. Warmth improves my mileage. What's not to be grateful about?

6. My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.

7. I am grateful that my back deck is all cleaned up and functional again. I have an instant retreat space back there and I have already put it to use and love how calming it can be sitting out there, taking in some sun, tending to my herb garden, having a fire in the chiminea or chatting on the phone.

8. A freezer full of wild-caught salmon. I'm having some of it tonight. On the grill. AWESOME.

9. DVRs and Roku. There are times when I just need to ESCAPE!

10. Solo road trips. I've had to make two round trips since mid-May (one to the Tri-Cities, one to B'ham), and I love the silence and solitude of those drives, especially since the weather was beautiful 3/4 of the days/nights. I listened to podcasts, stopped to take pictures, ate yummy food and just let my brain unwind.

Friday, May 16, 2014

Step right up, get your tickets to some GOOD NEWS...


Today, my MRIs (all 1.5 hours of them, complete with an IV full of gadolinium dye) showed the following:

  • All previously active lesions are now officially inactive (yay)
  • All previously "questionable" lesions are no longer present (yay)
  • I have no new active lesions (yay)

Blood tests will confirm that my body has adjusted well to the Tecfidera; I will have those results by the weekend. Previous tests when I wasn't feeling as good as I am now showed my liver was metabolizing the medication just fine, so it's a safe assumption that my liver is still functioning well and I will be able to continue to use this new oral med, as it seems to be working for me. The manufacturer has proven to the FDA that it is safe to use 4 years out, so I'm feeling great that I might NEVER have to go the route of injectible medications with side effects. 

I will get a neuropsychological screening done this summer to establish a cognitive deficit baseline, and I will review my arthritis and carpal tunnel issues in both wrists also this summer to see if I still need surgery. I will also have my left big toe checked for arthritis or gout and move forward accordingly. 

I also have permission to double my wakefulness medication (modafinil) if I should get hit by a period of super fatigue (like I had last April, which caused me to miss both MS walks I had signed up for, in fact). 

I'm psyched to hear this news, of course, and it means I can let my energy levels shift away from concerns about disease progression so that I may invest more of my focus/attention on my work in the sleep medicine field. I've discovered that the more I work and the more I involve myself in other intellectual pursuits like writing, which don't shine a glaring light on my MS, the less I am stressed by it and if I'm having symptoms, they are barely noticeable if they are present at all. 

And that's what I'm going to leave you with, dear reader, as a closing bit: the less you examine your illness, the less it seems to bite back. I know I am lucky in that I have a mild form of MS which is not physically apparent to people around me, and I know that others with major mobility issues will be challenged to NOT always be thinking about their illness, because being out of balance or lacking movement in an arm or the sight in one eye can be terribly present... but in the end, we still can choose where to focus our attention, and if it's toward things that are life-affirming, positive, and helpful in some way to the community, then how can that NOT be a better approach? 

Thanks to everyone in my life--family, friends, doctors, nurses, technicians, pharmacists, insurance payors, MS cohorts--for buoying me up through this challenging year. And thanks, to, to Biogen Idec, which manufactures Tecfidera. I have been hearing all kinds of good news from my peers who started "Tec" before I did; I am so pleased to be part of the good news community now! 

Thursday, May 15, 2014

One year MRIs TOMORROW...



About an hour and a half in the White Tube of Death (WTD) means I'll be taking a lil' somethin' something'...

We will be looking for the following in my films:
  • Lesions that used to be active but are now smaller and/or inactive (yay)
  • Previous "questionable" lesions which are now smaller and/or inactive (yay)
  • New active lesions (boo)
  • Old lesions that are STILL active and the same size or possibly larger (boo)
  • Previous "questionable" lesions which are larger and/or active (boo)

This will require contrast dye which explains the long time spent in the WTD and which feels, as my friend ES accurately described to me last night, as if you are a carry-on suitcase jammed into the luggage compartment of an airplane.

If I get more yays than boos, then I'll chalk it up to my disease modifying therapy (Tecfidera) working for me (hey, I've adjusted to it--the least it can do is work for me, right?) and overall good management of my disease course through healthy lifestyle (stress management, good sleep habits, nutrition supplements, primarily).

If I get more boos than yays, we might have to go back to the drawing board on the DMD to see what else might work.

But I feel pretty good these days and expect the former, not the latter, to occur. I reallyreallyreally hope I don't have to change pharmaceutical course because that will probably mean going from oral meds to injectables and that's not really in my plans...

Wish me luck!

Wednesday, March 19, 2014

National MS Awareness Month || The high price of disease management for MSers


One of the biggest shocks a newly diagnosed MS patient might encounter is not even the diagnosis itself, but rather the cost of disease modifying therapies (or DMTs). If given ONLY the suggested manufacturer's price, pre-insurance, one might swoon under the stress of how to pay for it. After all, the median household income in the US, as of September 2013, was reported to be around $51,000 annually.

Take a look at the following chart to see how prices compare for each of the DMTs available today.

Current Cash Prices for a One-Month Supply of MS Medication || Source: Healthline:

One-month supply when purchased from Walgreens or Walmart pharmacy (averaged)
KEY:
Name of Medication
(Manufacturer)
Dose + monthly price + annual price


Aubagio
(Genzyme)
Dose: 14MG (30).............................$4,757.19......annually = $57,086.28

Avonex
(Biogen Idec)
Dose: Prefill 30MCG/0.5ML Kit............$4,967.64......annually = $59,611.68

Betaseron
(Bayer)
Dose: 0.3MG INJ (14).......................$5,482.12......annually = $65,785.38

Copaxone
(Teva)
Dose: 20MG 1PK=30 INJ...................$5,753.71......annually = $69,044.46

Extavia (Bayer)
Dose: 0.3MG INJ (15).......................$5,010.23......annually = $60,122.70

Gilenya
(
Novartis)
Dose: 0.5MG CAP (28)......................$5,081.19......annually = $60,974.22

Rebif
(Merck KGaA/Pfizer)
Dose: 44MCG/0.5SYG INJ (12)............$5,227.52......annually = $62,730.18

Tecfidera
(Biogen Idec)
Dose: 240 MG CAP (60).....................$5,229.55......annually = $62,754.60

Tysabri
(Biogen Idec)
Dose: 300MG/15 INJ.........................$5,524.06......annually = $66,288.66

What in the world can drug manufacturers be thinking, setting these prices this high?

It's difficult to get a straight answer on this from anyone in the industry, but it basically boils down to this:

Costs of development (research)
Market demand
Competition
Patent Life (pre-generic)

Making drugs is a business, after all, so most basic business principles, like supply and demand, apply here as well. Drug manufacturers don't set these prices randomly; the high cost of development and the eventuality of a patent expiration mean they need to recoup as much as they can up front before generics can come in and stimulate competition (which will also, eventually, drive prices down). But lower, more competitive generic prices are NOT going to happen for a while.

So what are MSers supposed to do to afford these extremely expensive medications? It depends upon their insurance coverage. Private insurers cover DMTs at various rates that may or may not be acceptable to some patients. How the Affordable Care Act will ultimately impact MSers is also up for debate. Potential out-of-pocket caps on prescriptions mean patients may have to pay much more (25 percent) of the expense of their drugs, which could means expenditures of $1200 a month or more for some, which is an unrealistic option for many families.

Fortunately, most every drug manufacturer has a prescription assistance program set up to keep the prices down for any who apply. They vary from company to company, but ultimately these plans do bring the costs down. For some, it's considerable: MSActiveSource, for instance, makes it possible for most patients to pay just $10 a month for Avonex, Tecfidera or Tysabri. Other programs are less generous or offer different kinds of option,s depending upon the patient's current insurance plans.

MSers can learn how to apply for prescription assistance for their DMTs and other MS-related medications (i.e. IV Solu-Medrol, Prozac, Botox, Provigil, Acthar Gel, Ditropan, and more) at this LINK at the Multiple Sclerosis Association of American (MSAA) website.

PS THIS JUST IN: A great summary article from MS advocate Stuart Schlossman at Stu's Views & M.S. News: MS Medication Financial Assistance Programs, if you need the most updated, thorough information in one website. (Thanks, Stu!)

Friday, January 3, 2014

Relief by flush... not necessarily a contradiction in terms

One intriguing side effect of the medication I'm taking (Tecfidera) is something called "flushing." This is more or less the same side effect I would get from taking Niaspan, a high-dose version of niacin (vitamin B3) often prescribed as an "old school" treatment for high cholesterol. 

Flushing consists of an intense itching that takes place just under the skin (very similar to allergic itching) and a companion reddening of the face and/or neck and/or chest. For me, the flushing mostly impacted me at the ears; the insides of my ears would get extremely itchy and my ear lobes and pinna would turn a deep red and feel warm to the touch. 

I took Niaspan for years and it was extremely helpful in lowering my cholesterol. I also took an extremely high dose (2000mg) which did not seem to bother my liver. At bedtime, I would take this dose with four baby low-dose aspirin, which help to attenuate some of the discomfort of flushing. I learned to ignore the side effect mostly and to simply tolerate it. Apparently I'm more tolerant than most, as I've heard horror stories from people who have tried Niaspan; interestingly, their tales of misery correspond almost too neatly with the same horror stories spun from others who are taking (or had to stop taking) Tecfidera due to intolerance issues.

Tecfidera, it turns out, does pretty much the same thing to me in terms of flushing, except that it makes my whole face red (actually, from the chin up, I turn magenta; from my chin down, I'm my normal sallow olive-skinned self) and the itching tends to spread to other extremities. Still, it's not usually too bad and maybe just once a month do I actually notice it. Since I take this medication not only at night (when I can sleep through this side effect) but also in the morning, I am always concerned I will be struck with flushing at an inopportune time. By and large, that hasn't happened. Once in a while, I might feel it coming on, but in the last six or so months, I think I've really only noticed it a total of six times (maybe more, but it wasn't extreme enough to be memorable).

I had an afternoon of flushing the other night, which surprised me with its severity. Luckily I was in a movie theater where nobody could see me. Then, the next night, it happened again and I even thought about taking Benadryl to counter the effect (which eventually I did when I went to bed as I was also having some congestion issues). 

I decided the next day to look into the mechanics of flushing. Is it a bad thing for someone with MS? A good thing? What exactly do Niaspan and Tecfidera have in common that leads them both to achieve this similar side effect? But first things first: What is actually happening to the body during "flushing?" 

Biology 101
Remember, there are arteries and capillaries. Arteries are the large vessels which carry lots of blood away from the heart at a very fast rate to all major sectors of the body, while capillaries distribute the blood (in smaller amounts, more slowly) from these main arteries to the body's nooks and crannies. Sometimes, the bottleneck of blood supply transferring from the arteries to the capillaries leads to inadequate blood flow, leaving some toxins to remain in the cells rather than be washed away by blood factors necessary for healing. 

However, if you dilate the blood vessels  (technically, vasodilation), they relax and expand to allow more blood to stream through and bring healing blood products to the cells. The cells can then flush out any resident toxins. The itchy warmth that occurs is caused by newly oxygenated blood flushing into the capillaries close to the skin as well as by the actual process of dilation that occurs in the blood vessels.

Dilating the capillaries can happen as a natural occurrence (as in an immune system response where histamines are released into the blood stream to deal with inflammation), or it can happen with some pharmacological help. Niacin's signatory impact on the body is through vasodilation. By opening up blood vessels, cholesterol in the body can be processed and moved without sticking to the walls of the vascular system and creating plaques that lead to chronic disease later.

It appears that Tecfidera activates a similar kind of flushing response in either the vascular system or fibers of the autonomic nervous system (or maybe both?), though researchers really can't explain how or why as of yet. I did learn that these ANS nerve fibers serve the sweat glands, which can lead to an effect called "wet flushing" (much like a hot flash, but not related to the female hormone, FSH), which is not the same as the "dry flushing" that occurs via vasodilation from products like niacin (see Nasr, Cleveland Clinic).

What's interesting to me is that I learned in my research that, between 1946 and 1959, thousands of MS patients were treated with a central nervous system vasodilator in a kind of therapy called "relief by flush." Apparently, histamine vasodilation proved to offer many MS sufferers relief from acute "flares" and virtually every kind of symptom (see Ganesh & Stahnisch, 2013). Inconsistency in research, the death of the leading researcher, Hinton Jonez, and the distraction of new drug research seemed to pull attention away from these findings. 

Lately, however, there has been a return to the notion of niacin as a potential remedy for MS after controversial treatments for chronic cerebrospinal venous insufficiency (CCSVI) began to make headlines in the mid 2000s. Though the jury is still out on the efficacy of "liberation therapy" for CCSVI, vitamin B3 has been resurrected as a potential helper and even shown in separate studies to offer "dramatic protection" against early stages of multiple sclerosis (Rhodes, Haacke & Moore, 2011).

Why this is relevant to MSers
Well... last fall, I stopped taking Niaspan. I was having some pretty serious "wet flushing" and, at age 48, I asked my PCP if he could check to see if I was in early menopause. I had a blood test, stopped taking my birth control pill for a month to see what would happen. Nothing changed, I still had the sweats, and the blood test came back negative. Then I stopped taking Niaspan to rule it out as the source behind my nighttime flushing. I continued to have it (and still do, though not all the time). Clearly the culprit is Tecfidera.

But what about the Niaspan? I completely forgot until recently that I wasn't taking it (with its companion baby aspirin) and now I wonder if my cholesterol has grown elevated without it. Hmm. One of my worst symptoms of MS has to be this underattention to detail that is not typical for me. I hate forgetting, making careless omissions. I think this oversight is one of them, and I hope I won't regret it later.

I'll be seeing my doc again later this month for annual tests and will be curious to get back my cholesterol results. But in the meantime, I think it's safe for me to go ahead and reintroduce the Niaspan, 1000mg at a time this week, bumping it back up to 2000mg next week. It seemed to be working for me before, and by the looks of things, all that flushing action it contributes to might end up being the perfect companion to my Tecfidera treatment.

And now, when I hear others complaining about the flushing side effect of Tec, I can offer them a glimmer of hope, that maybe the itching and redness and internal flushing is just proof it's doing its job, that there really might be some legitimate "relief by flush."

(Or maybe not. The jaded GenXer in me has discovered that many of my MS contemporaries seem more happy to wallow in their discomfort and complain rather than find a solution. Positive spirits like me just come in and ruin their day! LOL).

All I can say is that I feel very lucky to be able to tolerate the flushing I get from either drug. 

At any rate, stay tuned...


Citations & further reading

Brickner, RM. "Phenomenon of relief by flush in multiple sclerosis; its use as a foundation for therapy." AMA Arch Neurol Psychiatry. 1955 Feb;73(2):232-40. DOI:10.1001/archneurpsyc.1955.02330080110020

Denoon, DJ. "Vitamin B3 May Help MS." 2006. WebMD Health News. See: http://www.webmd.com/multiple-sclerosis/news/20060919/vitamin-b3-may-help-ms

Nasr, C. "Flushing." (n.d.) Cleveland Clinic Center for Continued Education. See: http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/flushing/

Ganesh & Stahnisch. "On the Historical Succession of Vessel-Based Therapies in the Treatment of Multiple Sclerosis." 2013. Eur Neuro 2013;70:48–58. DOI:10.1159/000348780

Rhodes, MA; Haacke EM, Moore EA. CCSVI as the Cause of Multiple Sclerosis: The Science Behind the Controversial Theory. McFarland Health Topics: 2011. ISBN-13: 978-0786460380. Amazon link

Stimson, D. "Vitamin B3 Points Toward New Strategy for Treating MS" 2007. National Institute of Neurological Disorders and Stroke. See: http://www.ninds.nih.gov/news_and_events/news_articles/news_article_MS_B3.htm