MS med makes cold worse?

I never get annual flu shots because I don’t want to help my immune system in any way. I’m at war with my immune system to a certain extent because it is at war with me.
 
So when I got this cold at first I kinda thought it was cute, because my immune system seems like such a bully.
 
But now three weeks into the monster cold — which I only call monster cold because I don’t usually get colds — it has lost its charm.
 
Seldom sick as a kid
 
I was never a very sickly child. I had chickenpox once, and mumps, which kept me out of school for the requisite time but I was not prone to getting regular colds.
 
As a young adult, I did occasionally catch whatever was going around, but was never down for more than a few days.
 
Once I was diagnosed with MS, though, I noticed how rarely now anything makes me sick. I assume that this is evidence that my immune system is superstrong and to be fought against as it is attacking me by misguided accident.
 
But now obviously my immune system is not in super mode.
 
Gilenya works
 
The fact that I got this cold suggests to me that the current MS med I’m taking is doing it’s job for me, thwarting my immune system by restraining lymphocytes from being released by my thyroid. (See previous post on Gilenya.)
 
However, it is driving me nuts not being able to speak. My laryngitis was so bad at one point: I had called customer support for my new HP laptop and it was voice-response only. It couldn’t figure out what I was asking for. Frustrating.
 
A friend gave me a bottle of Echinacea left over from when she was fighting a cold.  But it’s from 1997 and in small print on the side it says “Not recommended for individuals with auto-immune conditions.”
 
And while there is now some debate over whether MS is in fact an auto-immune disease, I prefer to err on the side of caution.
 
Does OTC negate it?
 
I’m not sure if avoiding taking any cold medication is the wiser decision here.
 
My doctor did advise me that “being on Gilenya doesn’t mean you can’t take symptomatic cold remedies.” But he also concedes that it is “(h)ard to relate this particular problem to Gilenya…”
 
So do I risk feeling better and maybe blocking the great work this drug is doing?
 
I think I’ll just go back to bed and think about this tomorrow!
 
Things I’ve learned this week
 
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Genial Gilenya

I am now taking the oral medication Gilenya (fingolimod). It was first synthesized in Japan in 1992 by chemical manipulation of a naturally occurring antibiotic, and finally approved by the FDA in 2010 as “the world’s first oral MS drug“. 
 
I call it genial because compared to giving myself daily shots, it is just a daily pill I swallow. But “genial” by no means suggests benign. This drug is as toxic as everything else I have tried. Incidences of PML occurring in people taking Gilenya do happen.
 
This Method
 
Everyone’s immune system contains lymph nodes, which are tiny glands containing immune cells (AKA white blood cells) called lymphocytes. Lymphocytes are usually helpful, but in MS they get confused and attack the central nervous system (CNS), and permanently damage the myelin sheath.
 
Gilenya activates sensors on your lymph nodes to restrain some white blood cells. That way, these blood cells aren’t released into the bloodstream, where they can attack. (Other lymphocytes are still circulating and available to do their job, watching out for intruders like viruses and bacteria.)
 
It also activates sensors on your heart, which can cause your heart rate to temporarily slow down. So it is recommended that all users be monitored by a medical professional for at least six hours after the first dose.
 
My Experience
 
I have been taking Gilenya since April 2012. This is from an earlier blog post:
 
…I packed my backpack with items to stave off the boredom of sitting around that long: two books I am currently reading [one fiction and one non-fiction], a book of Sudoku puzzles [I’m addicted!], lip balm…
 
We also brought a cooler with yogurt, granola bars, and sandwiches.  [My husband] brought a fingertip pulse oximeter so I could check my pulse regularly on my own.
 
In the end, the whole experience was pretty anti-climactic, which is probably the best-case scenario, really.  I read one book the entire time, and they let us leave before the rush hour started.
 
It was a record heat in SF, which lent the whole outing a surreal feel, and now that I’m onto Day Five, it is like it never happened…
 
It’s now been 6 years and I have tolerated it fine, but it has not made any amazing difference, as I had secretly wished. 
 
Things I’ve Learned
 
Gilenya might increase your risk of skin cancer. It can render a “live” vaccine inert while using it. And it can interact with a multitude of drugs, including vitamins, and herbal products.
 
It is rare but macular edema (a correctable eye condition causing swelling and blurry vision) may occur within the first 3-4 months of starting. It may be confused with an MS exacerbation, so check with your doctor, and consider annual ophthalmology appointments.
 
Finally, I have started to see reports about a “rebound relapse” phenomenon when users go off it. Obviously, once you go off, you should expect that the “door” of all lymph nodes is no longer being guarded so you most likely will resume MS where you left off.
 
But in about 25% of patients, there is an even more aggressive worsening of MS after stopping and these patients “do not return to the level of function that they had before or during treatment“. This worsening most often happens within 12 weeks of stopping. It is definitely something to consider before you start if you think you will want to go off it to get pregnant, for example.
 
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Troublesome Tysabri

In 2004, a new MS drug was approved by the FDA. As opposed to an interferon, Tysabri (natalizumab) is “a monoclonal antibody”.  For more explanation, try this.
 
It blocks white blood cells from binding to molecules which want to drag them into the brain where they would cause inflammation.
 
As an aside, at this point, all the MS meds aim to reduce inflammation in the brain. This is a primary goal. Symptom management. Because we STILL don’t know what causes the disease. Ergo we still can’t say any of them “works” beyond their ability to reduce inflammation in some brains.
 
In healthy (read ‘non-treated’) people this process is desired. It happens when the body is fighting an infection. Without this process, those on it are more susceptible to infection. The body is without one of its tools.
 
Just a year after it was approved, my neuro switched me. 
 
My First Infusion
 
When I began Tysabri I was cautiously optimistic. It was a big deal: a new drug administered by monthly infusion as opposed to those icky (to me) daily shots. So I went for my first infusion on Thur., 2/24/2005.
 
At this point, I needed to walk with a cane, I was experiencing some rapid loss of energy daily (fatigue) and had a bout of double vision. But the infusion went fine, and I was hopeful I’d see improvement soon.
 
I had just moved in with my boyfriend. So the next morning we watched the news together in horror: scrolling across the bottom of the screen was a notice that Tysabri had been taken off the market because several subjects of its latest study had died!
 
The fallen test subjects had developed a severe brain infection, called Progressive Multifocal Leukoencephalopathy (PML). 
 
PML
 
It is described as “a viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).”
 
We now know that PML is caused by the JC virus, something we all already carry, but is usually kept in check by a healthy immune system, something we MSers don’t have. 
 
Other risk factors include duration of therapy and presence of the anti-JC virus antibodies. 
 
If they aren’t already triggered, these antibodies might appear after time on Tysabri, for example. This is what doctors are looking for every six months; it’s a “marker”–not that the individual definitively has PML, but that they are more likely to get it.
 
My Second Infusion
 
Eventually the drug was brought back to market, based on the reasoning that its benefits were greater than the risk. And in 2011, my neuro tried me on it again.
 
And again, the first infusion went fine. I had regressed to using a wheelchair to get around and I was tele-commuting full-time from home. Again I felt cautiously optimistic.
 
The next month I was sitting next to another MSer and she was saying how great she was doing on the drug. I nodded and smiled, hoping for the same.  
 
Suddenly she looked at me oddly and said “You’re starting to break out in hives. I can see it on your face! Aren’t you itchy?”
 
The nurse rushed over and discontinued the infusion right away. As she pumped me full of Benadryl and Solumedrol, she told me that I was now hypersensitive to Tysabri. That ruled it out for me ever again.
 
I admit I was disappointed. 
 
This is on the 2019 Safety Information: “Patients who receive TYSABRI for a short exposure (1 to 2 infusions) followed by an extended period without treatment are at higher risk of developing anti-natalizumab antibodies and/or hypersensitivity reactions on re-exposure”
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
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Caustic Copaxone

My liver toxicity from Avonex meant that I couldn’t take anything else with interferon, ruling out all other MS drugs at the time, except for one: Copaxone.
 
Copolymer-1, as the chemical was originally called, was discovered by scientists in the 1960s in Israel. Again, I don’t know what they were looking for, but they discovered that it suppressed MS-like disease in mouse models.
 
[As an aside, this is called Experimental Autoimmune Encephalomyelitis (EAE), still accepted today as a murine model for this disease. Interesting because MS doesn’t seem to appear in the animal kingdom, or maybe their lives are just too short to foster development of a slow-progressing disease like this. So scientists needed an animal model to study and use in tests. But we still don’t know what causes human MS, so the thing researchers use to induce it in animals may sometimes cause unintended consequences hard to tease out (i.e., was our result due to the mechanism of the disease itself or a reaction to the variable, which is not found in human subjects?) Something to make you go “hmmm”. ]
 
Drug development continued and it was finally approved for the Relapsing-Remitting form of MS (RRMS) in 1996.
 
How It May Work
 
Now known as glatiramer acetate (brand name Copaxone), it is a synthetic (man-made) protein that mimics a component of the myelin sheath and seems to block damaging cells, though the process is still not understood.
 
Some researchers believe that it acts as faux material to lure and distract the attacking cells away from their real target, but others believe it actually alters the body’s immune function itself.  Concerns about this persist but there is no evidence yet to prove it.
 
Anyway, my neuro switched me to this. I administered myself sub-cutaneous shots of 20mg daily for 7 years, from June 2003 until July 2010.
 
More recently the FDA has approved a newer 40mg dose injected only 3 times a week, and there are some reports that those taking the higher dose less often have fewer side effects. But the lower dose and schedule are still used as well.  
 
Ugh
 
I’m not sure if I would’ve welcomed news of a less frequent dosing option. I hated the shot I took everyday, and I doubt a higher dosage less often would’ve made that much difference. 
 
I rotated injection spots on my body as I was instructed, but no matter where I shot, it felt like I was injecting acid. 
 
For the first few years, I tried to dutifully apply ice packs to the area, both before and after it, as I was told, but it always seemed to make it worse.
 
Finally one day I tried heat instead. Ahhh, the relief!
 
Who’s In Charge Here?
 
Wanting to check that I wasn’t harming things, I called the helpline. But the nurse on the other end told me that she hadn’t received any information ether way. But as far as she understood it, it wasn’t affected by heat.
 
We decided that if a heating pad worked for me, I could continue doing it until I heard otherwise.
 
And as I was looking over new prescribing documents about this drug, I found this: “Before use, allow the solution to warm to room temperature.” Doh! Why didn’t I think of that?
 
Helpful tip: Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist whenever you get a new medicine.
 
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Ack, hepatitis!

In June 2003, 2-1/2 years after I had started Avonex, I developed a liver toxicity to it and was advised to stop it immediately. My medical chart read “elevated liver enzymes/hepatitis”!
 
Apparently, this is a fairly rare occurrence (1-2% of patients), but requires “prompt discontinuation of therapy.” Sigh.
 
The Organ 
 
The liver is described on WebMD as “a large, meaty organ that sits on the right side of the belly. Weighing about 3 pounds, the liver is reddish-brown in color and feels rubbery to the touch.”
 
It goes on to say that “The liver’s main job is to filter the blood coming from the digestive tract, before passing it to the rest of the body. The liver also detoxifies chemicals and metabolizes drugs. As it does so, the liver secretes bile that ends up back in the intestines.”
 
[As an aside, this is an interesting realization to me considering that today there is a lot of focus on the “gut microbiome” and its role in MS.]
 
Liver Toxicity
 
Anyway, the ER doc drew several vials of blood and then ordered me home to await the results. Based on my yellow-ness, he was expecting to have to admit me to the hospital.
 
Luckily the tests came back as “consistent with damage from toxins, probably medications” and no hospitalization was required. But I was directed to stay home from work on short-term disability while my liver recovered.
 
I also had to go for biweekly blood tests for the next two months, then monthly for the rest of a year. 
 
I actually got “get well” flowers from work, and after five weeks returned to my full-time duties, good as new.
 
The Biopsy
 
In Sept. I had to have an out-patient liver biopsy to make sure this was just a drug-induced hepatitis. The ruling was that any interferon –which was almost all of the MS drugs at the time– were now off-limits to me.
 
While doctors assured me that my liver enzyme levels had gone back down to normal, I wondered if I could help keep it that way. So I did a little online research on which foods and supplements might help.
 
I now regularly drink green tea (but studies show coffee may also be prophylactic), eat nuts and other mono-unsaturated fats, and try to limit my carbs and alcohol intake. (For example, I learned that the liver needs 2 weeks alcohol-free to heal.)
 
The liver is arguably your hardest-working organ, takes a lot of abuse and is one of the easiest to damage. Luckily, it is able to regenerate itself better than any other, too, so it is important to take care of it!
 
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Anxious Avonex

In December 2000 my doctor and I decided to start me on Avonex.
 
A younger sibling to Betaseron, Avonex was approved by the FDA in May 1996. It is also an interferon – beta 1A versus beta 1b – and it works in a similar way, attempting to tamp down the inflammation in the brain.
 
But again, even today, the way it works in MS is not known.
 
And as far as the availability of a generic, it is a “biologic” drug which means it is made from human or animal materials (complex biotechnological process) rather than through a chemical manufacturing process.
 
Starting Regular Deliveries
 
Most people who take any of the interferons “will have flu-like symptomsearly in the course of therapy (emphasis mine). So the instructions recommended I take it with something like ibuprofen to reduce the expected fever. 
 
These days it comes in other forms, like a prefilled syringe or even an epi-type pen, but back then each dose came as a kit with a vial of powder, a “diluent” (water), a syringe and needle, plus various small packets of rubbing alcohol and bandages.
 
My regular deliveries also included a small sharp’s container for disposal of used syringes and needles.
 
Learning to Inject Myself
 
Avonex would require that I give myself a shot every week.  So naturally I asked my friend and neighbor to join me at the training session so we both could administer it to me.
 
It was kind of eye-opening that sticking a needle into an orange was so similar to giving myself a shot. I was surprised at how easy it slid into the skin. I don’t know why but I expected some resistance! 
 
The nice thing about Avonex is that it is a weekly injection. So I never had to alternate injection spots.
 
But one problem I had at that time was what to do with the full sharp’s containers. There didn’t seem to be a standard procedure for how to dispose of needles, much less a sharp’s container.
 
Now I notice an instruction on the directions: “Check with your healthcare provider about the right way to throw away the container. There may be local or state laws about how to throw away the used syringes and needles. “
 
My First Shot
 
The first time I did my injection I deliberately did not take it with ibuprofen because I wanted to see how severe the fever would get. Lo and behold, it did.
 
Later I was scolded by a doctor friend of mine. She said that since fever is a warning signal to the body, and since I had been warned to take something with the injection for just that, I should’ve just done it to begin with! I always did after that.
 
But I never could learn to inject myself with ease. Every week I sat holding the shot in my hand above my thigh willing myself to just plunge it in.
 
I Develop Jaundice
 
Then one day I couldn’t keep my breakfast down, vomiting. Next I was walking by the mirror and I noticed that my eyeballs were yellow. So I went to an emergency clinic where I was diagnosed with severe liver toxicity. I was told to stop the Avonex immediately.
 
Unfortunately this meant that any interferons were now off-limits to me. That was most everything else on the market for MS at the time. But not everything.
 
Next up, Copaxone.
 
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Before Betaseron

In 1991 I was 26 and working as a waitress in a local pub.
 
I started to get brief moments of what felt like a buzzing in the back of my head that prefaced a loss of all strength; whatever I was carrying I dropped. Eventually it was happening every ten minutes or so and lasted for about 20 seconds.
 
Unbeknownst to me, the neurologist I had been sent to suspected I had MS. In those days an MSer was usually only given a possible diagnosis on the first visit, then probable based on observation of repeated incidents over time. There wasn’t even a test to definitively diagnose it.
 
The MRI
 
But it just so happened that there was this newfangled machine called a magnetic resonance imaging (or MRI) machine that would work like an x-ray but better. It would show him detailed pictures of what was inside my head. And he wanted me to go get a scan from this machine.
 
It was still so new (and expensive) there was only one in the entire SF bay area. When I got there the tech just told me they would do it twice: once as-is and the second time they would inject me with dye and scan again.
 
I laid in the machine and heard all this banging around me and contemplated what they were seeing and waiting for the injection. But after the first round of scans the tech came back and said they were done and I could go home.
 
The quasi-diagnosis
 
I realized later that they didn’t give me the second scan with the dye because they didn’t need to, that they could see the lesions without it.
 
Anyway, the doctor told me I had probable MS. Even with the confirmation of the MRI, which could show multiple brain lesions in a live person as opposed to autopsy after death, the presence of multiple lesions only mostly confirms it.
 
And at the time there was no treatment, nothing they could do. He told me all he could recommend was that I go home and move to the first floor and prepare for a possible wheelchair future.
 
The new era
 
Then in 1993 just two years after I was diagnosed, the FDA approved the first drug for MS, now known as a disease modifying treatment (DMT): Betaseron. It is produced by Bayer Healthcare Pharmaceuticals but even today they still don’t understand exactly how it works.
 
Researchers do know it is a protein produced naturally by the body in response to viral infections. And that one of the things it does to cells in the nervous system is to direct them to produce less pro-inflammatory and more anti-inflammatory agents.
 
They believe that by reducing inflammation in the brain, we will ease the still unexplained attacks by our own immune system on the myelin sheaths that insulate the fibers that connect our neurons.
 
(phew, I can see I need to back up and do a future post on the nervous system!)
 
What I concluded
 
For this story the point I’m trying to make is that the delivery system of this drug (a sub-cutaneous self injection every other day) seemed too extreme for the 26-year-old me since I had no symptoms. Also it was a brand new drug. I didn’t want to be a guinea pig. I thought it was fine to wait. I was wrong.
 
Next time: Anxious Avonex
 
As always, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements.
 
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MS or gout

In 1997 I came across a tidbit that I thought was funny. It turns out that MS and gout are mutually exclusive, meaning that if you get one you likely don’t get the other and vice versa.
 
I’d love to know what researchers were looking for when they found that out! But there it is. We are lucky I guess. Although I suppose if I was able to choose I would choose gout. 
 
I understand the pain is excruciating, but it can be treated with medication. Even without treatment you could recover within 1 to 2 weeks.
 
Also it affects men more than women. Interesting because according to NMSS, MS affects at least two to three times more women than men.
 
What Cases It?
 
Gout is caused by an overabundance of uric acid (UA) in the blood.  This may be brought on by genetic factors, or by “what was once characterized as a “rich man’s diet” (high amounts of meat, seafood, alcohol and sweetened drinks)”.
 
It is produced by the body and is the main component of urine in both humans and primates. Normally, it is excreted from the body via the kidneys in the urine. But when UA backs up, causing high levels in the blood, it forms crystals in the joints which results in gout.
 
But these same high UA levels also appear to prevent the development of MS leading to my question: which came first? Does MS prevent us from getting gout? Or does getting gout prevent a person from getting MS? 
 
How Can Knowing This Help Us?
 
Researchers now know that UA acts as a “free radical” scavenger in the body.  For example, as part of basic daily processing, any body produces “highly reactive” molecules that create inflammation and damage nerve fibers. UA acts as an antioxidant and just “mops them up”.
 
It also has been shown in animal models of MS to reduce inflammatory flare-ups in the brain and slow the passage of inflammatory cells into the central nervous system.  It even prevented paralysis in mice. Unfortunately not in humans.
 
Another recent study found that lower UA was associated with disability progression, as well as cognitive decline. 
 
Even more recently, another study found that “UA levels declined during the course of MS, which suggested that the periodic flare-ups of inflammation that occur in MS may ultimately exhaust the body’s antioxidant reserves.”
 
So I assume then that keeping UA levels up is a good thing for MSers as well as supporting my antioxidant levels. I will add the forbidden-for-gout foods to my diet to increase my levels of UA. See list here.
 
Where To Next?
 
 
That leads to another question I have: since animals generally don’t produce UA because they have an enzyme that breaks it down, we have to artificially induce it in them. So doesn’t this enzyme skew the test results? 
 
Also would UA protect you from getting worse if you already had it? Because right now there is very little that can be done for those of us that have transitioned to secondary-progressive (SPMS).
 
Obviously I’m not a scientist. But clearly, I think the relationship between UA and brain inflammation should continue to interest scientists.
 
I pledge to bring it up at my next neurologist appt. at least.
 
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MS and the DMTs

In 1991 when I was first diagnosed, I was told there was no treatment, nothing even recommended. I was told to just go home and though it may never get this bad, to make plans for a being in a wheelchair.
 
So I squirreled away old shoes I would wear when in a wheelchair to demonstrate to others that I use to walk, that I was still in their club. And I signed up for motorcycle lessons.
 
Then the first “MS drug” —Betaseron— was approved by the FDA in 1993. But everyone was quick to remind us it was not a cure. Nothing yet could halt  progression. The drug could only slow it.
 
Do I Start?
 
So began the advance of the “modern” age of MS medication and the word “immunosuppressant.” Yes, while everyone else works to boost their immune system, ours is out of control, attacking the nerves in our brain and spinal cord.  
 
(There are now more than 15 drugs, sometimes called disease-modifying therapies or treatments, DMTs. See chart here.) 
 
But it was still new, my doc at the time never even mentioned it, and I thought giving myself a shot was such an extreme, big deal since I didn’t have any symptoms. So I assumed I could wait to see if I got any. 
 
Big regret. Once I started having symptoms, and started giving myself shots, it was apparently too late. The disease had silently progressed while I “was busy making other plans.” (John Lennon, Beautiful Boy)
 
I will always wonder if I would’ve started sooner, would I still be able to  walk?
 
Why start them?
 
Evidence now says you should start disease-modifying drugs as soon as possible. I concur. What I learned is that you can never have a do-over in disease.
 
Often when you are first diagnosed, you decide you can treat it with alternatives to Western medicine. By changing your diet or taking herbal supplements, maybe. 
 
And when you do, you feel better.  It can’t just be placebo, can it? But you are forgetting two things. 
 
One, you were most likely diagnosed with Relapsing-Remitting MS (RRMS), so while your doctor was determining what was causing whatever you went to her for, you probably went back into remission all on your own.
 
And two, it’s a neurological disease. Because you now have been told it’s probably RRMS, you will never again be able to judge your disease by how you are feeling.
 
Why stay on them?
 
Yes, these drugs are so expensive and generics are hard to come by. You may fear that drug companies are just being greedy. The news reports all the time about shady practices and all kinds of fraud.
 
But it’s your life. You may be able to get financial assistance from the drug companies, or even the MS societies. You must now recognize that you’re on an expensive journey not of your choosing.
 
You must trust your healthcare professionals, or find new ones, since you can’t necessarily tell if it is doing anything. And I’m not suggesting that you give up any alternatives you believe are helping too. Obviously ask your doctor first.
 
Please just know that if you stop to see if you will feel worse, you can’t just resume and get back to where you were.
 
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Underwear and pills, oh my!

When I was first diagnosed, ATMs existed and there were 24-hour grocery stores. I remember thinking that of all the times in history to be struck by this disease, this was the best.

Underwear-and-pills[1]
Random thoughts during recent morning ablutions. 🙂
 
One thing I was happy about when I was first diagnosed was that ATMs existed and there were 24-hour grocery stores. Soon we were becoming more comfortable with online Bill Pay and shopping online.  Tech was steadily improving and newer services were being invented. I remember thinking that of all the times in history to be struck by this disease, this was the best.
 
I applaud manufacturers making easy open tabs on cans, resealable bags on grocery items, even instant coffee and instant oatmeal. You can even find “instant” mashed potatoes in the freezer section made out of “riced” cauliflower which tastes good.
 
Pill Bottles
 
I recently bought a small bottle of allergy medicine (Benedryl).  It had an up caret  ∧ on the bottle and a down caret ∨ on the lid.  In order to open the bottle, you had to line up the two, then pop the lid open. I used my teeth and every once in awhile instead of behaving, the whole open bottle would go flying across the room spilling tiny, bright pink pills all over the tile floor. Which I then had to pick up FROM MY WHEELCHAIR!
 
Another time I was starting a new MS med to be taken orally.  I was so excited to not have to give myself shots anymore.  Then I discovered that the new pills were coming to me in a bubble pack; I had to pop one out each day, or pop out a bunch (while watching TV, for example) and store them in a used pill bottle for safe keeping.
 
My coordination has slowly gotten worse over all my years with this disease.  I have not been able to handwrite for about fifteen years; I use my mouse with my left hand and type with one finger.  Why, I asked my doc–and anyone else who listened–would the manufacturer package these pills in a way that makes it so hard for MS users to open? Luckily, they switched to a regular bottle in the new year.
 
I also have begun to notice pill bottle labels printed in larger type (is braille being used too?), which I assume is helpful for those with limited vision. I believe you could arrange with your pharmacist.
 
Lid colors
 
I have graduated to a twice-a-day pill dispenser (A friend’s husband said to her, “I don’t think I need that yet. It’s for old people!”  She said, “Yeah, so?” as she pulled her own pill dispenser out of the drawer with her vitamins and calcium.) When I think pill dispenser, I think convenience.
 
I get my prescription bottles with all different colored caps. As they seem to be standardized, I have been able to swap out my plain white medication bottle caps. Color makes me happy!
 
I confess that I take enough different pills that I started switching out all the caps on new bottles of things I need to take in the a.m. to blue caps, and things I need to take at night to magenta, and things I need to take both times to white caps. 
 
When I’m refilling my weekly pill dispenser (I do it every Saturday a.m) it makes it quicker to not have to read the label each time. Just put items in white capped bottles in both sides of the dispenser, items in blue capped bottles go in the a.m. side, and items in magenta capped bottles go in the p.m. side.
 
Incontinence Products
 
Before I needed to wear them, a friend and I joked that since these were only made in white, but I only wore black underwear, we should get the patent on colored, disposable underwear for when our generation started to need them. Oh ha-ha, so funny! (You and I both know they are more commonly known as Adult Diapers, but I hate that and since it is my blog, I will be using “disposables”.)
 
Flash forward to today, where lavender and peach colored disposables are common and I just saw Depend® offering a limited edition of black disposables.  Well, we had our chance.
 
So I applaud manufacturers for making incontinence underwear in colors. Also making incontinence pads, which are more substantial then menstrual pads and made to hold urine. 
 
I would encourage more standardized sizes and absorbency levels (see description of Tranquility products). When the store is out of our regular “product” don’t make it hard for us to find a suitable replacement. Standing around the shelves trying to read each different package can be mortifying. And if you have a caretaker doing it, I think it’s worse.
 
Just things that make me go hmmm…
 
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