Month: March 2020

Don’t Ask for Permission. Ask for Forgiveness. Update from the NIH on which MS medications are safe and which make you more vulnerable to Covid-19.

The email I was hoping to get three weeks ago has just arrived in my inbox. The researchers running the clinical trial I skipped last week have finally come to the conclusion that maybe non-essential visits to the NIH (National Institutes of Health) are not such a good idea, after all.

The letter then went on to confirm that the MS drug I’ve been taking makes me moderately more immune-compromised, and therefore more vulnerable to Covid-19. Fortunately, I hadn’t waited for notification from the NIH, or from my neurologist. My dear friend MD (not a doctor) had prompted me to do a risk benefit analysis of taking Tecfidera in the age of Covid-19. I already knew Tecfidera is fairly useless at this stage in my disease, so it didn’t have any benefit to balance even the faintest risk. I’ve been off Tecfidera for three weeks now, and only regret that I didn’t get off it sooner.

I did go through the motions and wrote to “ask” my neurologist if he thought discontinuing my MS medication would be a good idea.

“Hello. I was wondering what you would think about my dropping Tecfidera? At this point I am more scared of Covid-19 than of MS. If Tecfidera lowers my immunity to Covid-19 even slightly, that’s not worth it to me, especially since there is little evidence Tecfidera is very effective against late stage MS. My first priority is to stay alive. What would you do, if you were me?”

I’d been off Tecfidera for two days when I got his response, “Although Tecfidera has not drop your lymphocyte but I can not say for sure it does not weakened your immune system. I understand and agree with you on holding it for now.”

One of the perks of being a lab rat is that you get to learn wonderful information from the leading minds in the field. I’d like to share the passage in the email from the principal investigator of my NIH trial. The passage outlines the role various MS medications play in potentially heightening vulnerability to threats like Covid-19. Perhaps this assessment will inspire others on MS medications to “ask” their neurologist about continuing on their drug:

“What to do if your private neurologist is prescribing you a multiple sclerosis (MS) drug.

Not all MS drugs are the same when it comes to their effect on immune system and specifically, on the part of immune system that is important for fighting viral infections such as the coronavirus.

Based on current knowledge, I believe that it is safe to start or continue any preparation of interferon beta (i.e., Avonex, Rebif, Betaseron, Extavia, Plegridy). In fact, even though we do not know if interferon beta preparations inhibit COVID19 virus, these drugs do inhibit similar viruses in a test tube and likely in humans. Therefore, there is theoretical possibility that these drugs may in fact be beneficial.

Similarly, glatiramer preparations (i.e., Copaxone, Glatopa, Glatiramer acetate) are unlikely to suppress your immunity against viruses and should be safe to start or continue.

MS patients on all other medications should be considered immunocompromised and therefore at greater risk of COVID19 infection. We have shown that when taking data from >28,000 MS patients who participated in clinical trials of these medications, the beneficial effects of all MS drugs decrease with the age of patients so that after age 53, these drugs do not slow progression of disability compared to sugar pill called placebo. This does not mean that current drugs should not be given to any person older than age 53. In fact, we do recommend these drugs to patients older than age 53 if they still experience MS relapses and if they make lot of new lesions on brain or spinal cord MRI. If you are older than age 53, have not had MS relapse for several years and your MRI is not showing new lesions, you may want to discuss with your private neurologist whether you should continue your MS drugs, especially during COVID19 threat. These drugs do lower your immunity and we have seen serious infections (with other pathogens than COVID19) in older people with MS. “

The letter also has a lovely section with advice for those of you gentle readers who do not have MS.

I am sharing that section as well:

“What should everybody do to protect themselves from COVID19 infection

Everybody, whether they are young or old, have MS, other disease or are completely healthy, are receiving immunosuppressive treatments or not, should immediately take precautionary measures consisting of:

  • Social distancing: try to keep 6 feet away from other people. After closer social contact, wash your hands with soap and water for at least 20 seconds. The virus does not survive soap and water. You do not need to use other measures if you have soap and water available.
  • Hand hygiene: wash your hands with soap and water as described above several times per day and always after close contact with other human being, or when you are outside and have touched surfaces that were touched by other people. Because you are unlikely to have soap and water when you are outside of your house, use hand sanitizers.
  • Avoid touching your eyes, face, mouth.
  • If you get fever, shortness of breath, dry cough, malaise – call your doctor. Do not go to medical centers. Your doctor will determine whether you need COVID19 screening test and will arrange for you to get the test. You should go to medical center/call ambulance only if you have problems with breathing (shortness of breath: breathing heavily, frequently and having bluish lips) – then you should not wait to talk to your doctor.
  • It does not help you if you are doing everything right, but your family members are not: the same rules for social isolation and hand hygiene must apply to your family members and anybody who enters your house.
  • Worrying will not help you. Worrying increases hormones steroids, which suppress immune system. If you allow yourself to worry, you are effectively hurting yourself. Not everything is within our control: we need to do things that are within our control and let go of the rest. Meditate, listen to birds singing outside, read books, talk to loved ones on the phone, stay positive.”

Gentle Reader, be well! Be good. But don’t be meek. Don’t wait for permission to take care of yourself!

Update 05/06/2020

Today I read that there is some evidence that Ocrevus was actually helpful for an MS patient in Italy who contracted Covid-19. I’m so happy to learn people on Ocrevus may not necessarily have to choose between protecting themselves from Covid-19 and protecting themselves from MS!

Words of Wisdom from the New Rochelle Containment Zone

Long time readers may recall my littlest sister, PYT aka Pretty Young Thing. She doesn’t have MS, or any chronic illness. But in true little sister style, she’s managed to become the center of attention…

I am blogging as a guest of Ms. Lab Rat today. It’s always nice when my big sis invites me to share her toys.
I have lived my life blissfully outside the MS maze. Every year researchers send me their MS sibling study and I share my boringly perfect health. I take no medicine. I have no difficulties doing anything (that’s a lie of course- I have great difficulty remembering to re-apply lipstick, and I tend to be self-absorbed) but what the study is really interested in is my balance and vision, my memory and peeing.
I have achieved ‘guest lab rat’ status because of COVID-19. I may not be in an NIH study but I AM living in the center of the New Rochelle ‘containment zone’. As I write this, it is Day 3. All quiet on the Eastern front. The National Guard is here cleaning and handing out food but I haven’t seen them. I’ve been on my silent street, watching my husband successfully coax our kids off training wheels. The road has fewer cars and they can ride longer stretches without needing to stop.
I have learned how to spell quarantine from assuring concerned friends over text that we are not, in fact, trapped here. My neighbors however have been quietly self quarantined for 15 days or so. It was easy to miss the absence of their presence. I realized too late that I hadn’t been asking if they need anything from the store- they do not.
Those of us who still roam free, stand on our lawns and discuss how surreal it is to be in the middle of a pandemic we were clearly not prepared for. We speculate on the ripple effects, share how our kids are reacting, is this a new seasonal reality, what it will do to the economy…and then we stop because we don’t even know what next week looks like.
I take my son out for a drive around town- grateful that children seem to be hardy in the face of this virus. If it were otherwise, I would be losing my mind. I have 3 kids around the age where fingers go in their nose and mouth and who only wash their hands when they are caught. This experience is making much better hand washers of us all.
I’ve made a point of going to the grocery store (even tho we are well stocked) so they have some business in return for staying open. I need them to be open in a week or two.
My son wants to ride in the car attached to the front of the shopping cart- he is 6 and barely fits. I’ve never asked him to wipe down the interior before but today I do…I’ve become that mom who sees germs on all the surfaces. On the cart handle, on the check out screen, on the cash back that I request, on the enormous stack of monopoly promotion cards the cashier hands me because there are few other customers to give them to. If we don’t win a boat, vacation home and screening room the game is certainly rigged.
I stop at the ice cream store to get a celebratory “training wheels are off” cake but mostly to give the poor clerk who showed up to work today something to do. While I am there, another customer orders a large cake for the team he is coaching- he imagines they will be celebrating the end of a multi-year run. I imagine the cake collecting freezer burn …no one is showing up to celebrate with their team. But I like his determination that the milestone should not be missed.
I drive by our TaiKwonDo studio and am happy to see students in the window- only to receive an email at night saying they’ve decided to close for a while too. I worry about how small businesses will survive this My husband reminds me that we just paid 6 months of a membership for 3 kids in advance. I am okay with that- they may not be as hard hit as others. I make a mental note to go back to the local hair salon, the one I had broken up with over bad color. I’ll get the Pheobe Waller-Bridge cut.
My fear isn’t that I will get sick. As I said at the top, I am boringly healthy. My fear is that I will get someone else sick. That I carry invisible COVID creepies to someone- like our heroic lab rat -and knock them off kilter. Or worse.
I reached this conclusion a day before our local institutions. I’ve taken it more to heart, and curtailed my own commute. We were all too late to the realization that our freedom to move must change.
What opened my eyes was our mother. I had invited her to lunch, a few days earlier, in the city. She’d cancelled a trip to Spain with my father for fear of COVID-19 . She drove into NYC instead of taking the train to avoid any risk of COVID-19. And then she sat down at a table with my husband and I, having lunch with two people who were likely closer to COVID-19 than her Spanish Air B & B hosts. I had not known she would later stop by our house- a block from the Temple which was ground zero for the cluster of infections- to drop off clothing to my kids. She was diligently curtailing her life to avoid exposure to a virus and my invitation led her to come hold hands with the hotspot, give it a kiss and a hug and head home to Connecticut, to my dad, with a little threat of Coronavirus hanging around the car. Being a good mother- she has not mentioned to me the oblivious selfishness of my invitation.
So if I have any wisdom to share from inside the containment zone it is to be more aware than I had been when this virus comes to your town- and it will. To be aware of your neighbors and what they may need. To be aware of your community. To be mindful of what you may carry along with you, as you carry on about your day. There are lab rats out there and they need every single one of us to think of their safety, even when we are secure in our own.

Stories from the Future

My son and his beloved MC in Thailand

Once my son and his girlfriend MC moved to China, they literally joined the future. They have a 12 hour head start on each day. They have had a long head start on the Corona Virus. Here is what they have to say.

Last night on her Instagram story, MC described their journey this way: 


Something tells me MC was a little rattled. Her usual delivery is quite measured. I would never expect her to dismiss other people’s decisions as “stupid.” 3,000 deaths can rattle a person.

Since their vacation in Thailand, my son and MC have been hopscotching around the virus, flying to Indonesia and then to Malaysia. They’ve been able to visit at least 10 temples. They’ve been able to work from a variety of Internet cafes. They’ve been privileged to hold American and Canadian passports, respectively. They’ve been privileged in that they don’t look like they are based in China. But my son is Chinese. One quarter Chinese. From the story he posted on Instagram last night, he is well aware that this is a fraught time to be Chinese.

Every day, I field anxious questions about these two. Everyone here has been worried about them. At this point, this intrepid couple is more worried about us. They know that our freedom loving lifestyle won’t permit the kind of measures that have flattened the curve of infections in Asia. They feel returning here would not be as safe as returning to Beijing. 

Can we be responsible enough with our freedom to prove them wrong?

Be well!

Ms. Lab Rat says, wash yer paws.

Who is Ms. Lab Rat without the Maze?

Last week, when Covid-19 still seemed an abstraction to many in the US, I made the decision to self-sequester and to drop all unnecessary activities. It was a no-brainer to drop my writing workshop at a local senior center, especially since I am immune-compromised myself. But I vacillated for days about dropping my clinic visit at the NIH (National Institutes of Health). 

Maybe that’s because I’ve formed an identity around participation in clinical trials, as this video, and indeed this blog, attests.

Currently, I am enrolled in not one, but two, clinical trials at the NIH. Participation in the first of these trials is contingent on this little lab rat reporting to the maze every six months. I’ve been a fairly compliant lab rat. But as the threat of Covid-19 became more imminent by the day, I became more and more leery of jumping back in the maze.

What if I were exposed to the virus on the airplane, or on the Metro, or at the NIH itself?

As the date of the clinic visit approached, I half expected the clinic would cancel my appointment for me. With less than a week to go, the clinic had yet to send me the usual itinerary, or to arrange my flight. The email I finally got from the clinic coordinator was not a cancellation, but rather an offer to splurge on a taxi for me. Which was a nice gesture. The clinic would be sparing me from exposure to the virus on the Metro. But…while they were at it, why not spare me from exposure to the virus in the clinic, or on the flight?

I’m embarrassed to admit that it took me days to consider the inverse of these scenarios. Rather than worrying about catching the virus from those I would encounter — why had I not been worrying about the possibility that I am myself a carrier of the virus, and could therefore pose a danger to others? What if I were to infect the clever nurses, the intrepid doctor, my fellow lab rats, and perhaps the lovely cashier at the hospital cafeteria?

I wouldn’t be able to live with myself. 

I cancelled the appointment. 

Yesterday, I was relieved to discover that my on-again, off-again fever was on again. I emailed the clinic that I had a temp of 99.6… which is next to nothing, as fevers go, but would be high enough to disqualify me from lodgings at the NIH.

The world around here is about to get a lot scarier. It’s about time I get used to the thought that it isn’t anyone else’s job to save me. I wish I hadn’t felt I needed an excuse to legitimize trusting my own sense of self-preservation over the professed concerns for my safety from the NIH. But I did. 

Was I worried that this somewhat indefinite postponement of my clinic visit would mean I lose my Lab Rat status?

Not at all. Gentle Readers, you may recall I that mentioned I was enrolled in two clinical trials. The trial I haven’t yet mentioned  is one I participate in from the safety of my home. I am one of 25 lab rats beta-testing a series of games on smartphones. These games are designed to measure neurological functions. While this smartphone app may never take the place of a clinic visit, it may yet prove helpful in situations where a patient can’t show up in a clinic. Like, ya know…in a crazy dystopian scenario where a mysterious virus is taking over the planet and an MS patient no longer feels it’s all that safe to travel. 

When to Disclose/When to Retreat

Here I am, last summer in Beijing, the white person facing the wrong direction while everyone else is doing tai chi .

Twenty five years after receiving a diagnosis of multiple sclerosis, I am lucky to still have the option to decide whether or not to reveal my condition to a new person or group. I’m not MS closeted, but I do like to wait until I’ve already formed an impression before I am designated/dismissed as “disabled.”  I’d rather expand peoples’ conceptions about MS than contract their conception of me.

I wasn’t sure if, or when, I would share that I have MS with the tai chi class I’ve just joined at the local rec center. The first session, I’d flowed along with everyone else and hoped I would have energy remaining for teaching my  class with college freshmen in the afternoon. Once I verified I could perform both activities in one day, I thought I’d be ready to add this new tai chi class to my schedule.   

When I went back for my second session, I stood with the other students and watched our instructor demonstrate the complete series of sweeping, balletic motions we would all be working towards. Most of the series looked like it might eventually become achievable for me. But not the kicks. 

We’d just spent the past hour meditating on our feet, then doing repetitions of the first three moves of the complex series. I’d been feeling like a badass for merely staying upright all that time. The instructor singled me out, as the newcomer, informing me I would one day be able to execute all the same moves he had just performed. 

As much as I don’t want to get in the way of reaching my full potential, I couldn’t see that my future would ever include a series of high kicks. I’d been feeling it would be enough for me to eventually execute the complete series while making smaller movements that merely approximated kicks.  

It was time to dial down the instructor’s expectations. 

So I made the call. I disclosed to the group that I have MS. 

The woman who’d been practicing beside me was baffled. She told me she’d worked with a lot of people with MS, and I don’t look like any of them. She said, I guess you know all about the latest drug.

A few years ago, I would have rattled off the good news about the latest drug, the one that had stopped my very aggressive case of MS. I would have told her how I’ve been commuting for years to the National Institutes of Health (NIH) for my doses while waiting for the FDA approval to release untold thousands of MS patients from the shackles of disease progression. Life sure didn’t turn out that way. 

I said, “There is always a latest drug. I’m here because I’m interested in the oldest treatments.” Since she was clearly a regular, I asked her how one pays for the class; she told me I could work it out the following week. We both assumed I’d be back. 

That was a week and a half ago. Since then…my son texted. His text put a check my lifestyle. 

Everyone who knows me knows I love my son. I love him more than all the pee in China. I have traveled to the other side of the planet for my son. At his request, I am now going to hunker down. 

The other day, he texted from Indonesia to remind my husband and I about the dangers of Covid-19. “There is a two-week plus lead time, so it might be wise to start hunkering down before there are any tri-state cases.”

Now, this young man happens to be living in the future. Literally. The sun rises for him 13 hours before it rises for us. He has spent the last year and half as a consultant based in China. When we visited, my husband and I saw for ourselves that China is ahead of the US in many ways, some positive—China has way more efficient mass transportation—and some negative—China has way worse air and water quality. Sadly for China, they’ve been way ahead of us with Covid-19. 

Which ought to mean, we have been given an opportunity to prepare. 

My son and his girlfriend MC managed to get out of Beijing in late January, while there was still time Thankfully, Thailand accepted them. They’ve been on the run from Covid-19 ever since. 

As an, ahem, older person with multiple chronic illnesses, it makes sense for me to take Covid-19 seriously, and to cut out all unnecessary exposures. My schedule is jam packed with transcendent, meaningful, one might say, necessary, exposures—which start to look foolhardy when viewed through the lens of Covid-19, 

Yesterday I cut out what is probably my most dangerous exposure—my weekly workshop with the over-70 set at a senior living center, who are feeling as vulnerable to this virus as passengers on a stranded luxury cruise.

I found this homage to Titanic at a train station in Nanjing.

I will miss these writers badly, but the sad truth is, our workshop was already flagging. In the five years since the workshop began, ten of the writers have died. Seven are currently out of commission with health problems, and yes, one of those seven has a very bad cough. The two writers who’d shown up for workshop yesterday didn’t blame me for getting out. I love so very many people in that complex. I hope they will be spared. 

Four of these writers have died since this picture was taken.

It was a no-brainer to decide to cut out the yoga class and the tai chi classes I’ve been taking at the local hospital…which may be the second most likely location for me to catch Covid-19. It was an easy call to suspend my gym membership. And as much as I love my yoga class at my neighborhood studio, I’d made a promise to my son. The new tai chi class will of course be the easiest unnecessary activity to cut from my schedule. Maybe some day I’ll be back. Maybe some day I’ll be doing those high kicks. It would be a shame to have fessed to a whole new community about my MS for nothing. 

I am not even considering cutting out my class at the art college. Those students are too young to catch Covid-19. Right? I counted seven students coughing yesterday. For once, I’d hoped they’d been smoking cigarettes or sucking down bong hits. 

Today, I have a fever. A mild one. 

Which caused me to call off the usual weekly writer’s workshop at my house. I can’t tell you how many workshops I’ve held while staving off a fever.

But things are different now. 

Be well!