Lemtrada: Hoping My Drip Stops Here

I’m finished with my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT) for me, and my final MS treatment of any kind.

Though some have required more, most people treated with Lemtrada receive only two rounds. The first round consists of five infusions over five days. The second round, a year later, is three infusions over three days. If it works “as advertised,” Lemtrada will stop a patient’s MS progression. If it works better than advertised, as it has for more than a few, some MS symptoms actually improve.

I’m doing well, so far

I feel sharper cognitively and I think that my legs are a bit stronger and my walking is slightly better. My sense of feeling in my feet has also improved, a bit. The last brain MRI that I had showed no new, active, or enlarging lesions, but that’s been the case for me for many years.

Lemtrada is a journey

We Lemmies like to say that Lemtrada treatment is a marathon, rather than a sprint. Its benefits may not be apparent right away. It’s also a roller coaster ride. One month after my first round of infusions, I wrote:

“Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster. On several days it was very tough getting out of bed. Other days I felt good when I woke up, but then I took a dive in mid-afternoon and had to head back for a nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s made for an uncomfortable ride.

“One day I finally listened to my body and spent the whole day in bed. It helped, but it didn’t stop the coaster.”

It turned out that I’d picked up a low-grade strep infection, which caused a fever that was responsible for some of those problems.

At four and a half months, my wife asked, “Do you think you’re walking better?” She’s a retired physical therapist, and her knowledgeable eye had spotted a little improvement. She was right.

There can be risks

Lemtrada can cause some side effects that can be serious. They include autoimmunity, where immune cells attack healthy cells or organs,  an increase in the likelihood of some forms of cancer and some thyroid problems. Because of this, patients must have their blood and urine tested every month for four years. This close monitoring improves my comfort level; my neurologist should be able to spot any problems that are brewing and, hopefully, nip them in the bud.

My journey continues

The roller coaster hasn’t stopped, but it’s definitely slowed. There have been aches and pains that come and go, particularly in my lower back, butt, and thighs. But my good days far exceed the bad. And, the reward outweighs the down days and the risks.

So, I’m buckling in once more, expecting the roller coaster to pick up speed again. I’m crossing my fingers that Lemtrada will indeed be my final DMT and that the IV drip will stop right here. I’ll keep everyone posted in future columns.

One bit of disclosure: About a year ago, I participated in a meeting of the Lemtrada MS Digital Advisory Board, for which I received a fee and had my expenses paid in exchange for allowing them to pick my brain. You can read about that experience here.

(A version of this post first appeared as my column on www.multiplesclerosisnewstoday.com)

Double-Header: My Lemtrada – Round 2, Check Out a New MS Forum page

You may have noticed that I’ve been away from this blog fo a while (at least I hope you noticed). There are a couple of reasons for this.

As I write this I’m sitting in an infusion chair, two-thirds of the way through my second round of Lemtrada infusions. I’ll have a report in an upcoming blog most. In the meantime, to catch up with me, you can read these earlier columns about my Lemtrada experience.

12/9/16 http://themswire.com/starting-down-the-lemtrada-road/

1/17/17 http://themswire.com/lemtrada-for-my-ms-ups-and-downs/

6/5/17 http://themswire.com/my-lemtrada-journey-do-you-think-youre-walking-better/

7/3/17 http://themswire.com/my-lemtrada-journey-6-month-report/

1/18/18 http://themswire.com/my-lemtrada-journey-a-new-years-update/

Also, I’m excite to announce that a new MS forums page on which I’ve been working is now live. You may know that I’m a Patient Columnist for the MS News Today website. That’s where these forums live. You can get to them by going to the MS News Today home page and clicking the “Forums” tab or you can take the easy road, by passing the home page, and just click here. Please come in and start or join a discussion.

It Shouldn’t be This Hard to Get Our MS Medications

I got a phone call from my MS One to One nurse, Lynn, a few days ago. One to One is the patient support service provided by Sanofi Genzyme for patients on the biotech company’s MS disease-modifying therapies (DMTs) Lemtrada (alemtuzumab) and Aubagio (teriflunomide). Lynn called to ensure that all of the paperwork was up-to-date and ready for my second round of Lemtrada infusions, which is scheduled to begin the second week of April. She told me that all of the insurance was approved and I’m good to go.

I’ve been very fortunate. I’ve never had a problem getting prompt approval of my medications, whether I was using commercial medical insurance or while on Medicare. Over the nearly 40 years since my MS diagnosis, I’ve been on four DMTs. I credit my neurologist and her top-notch staff for my smooth sailing.

But others haven’t been as lucky. A fellow MS patient, Jamie, who writes the Multiple Experiences blog had a horrible insurance experience right before her second round of Ocrevus (ocrelizumab) infusions. Here’s how Jamie describes it:

“I have no words. I’m so frustrated that the only thing I could do was cry. My insurance made some error and terminated me on one of their systems. I knew about this since last week and I had an escalated adjustment that was being done. I didn’t find out until yesterday they didn’t do it by accident when I called for something else. However the kicker is that the error that terminated me, terminated me in my authorization department. My Ocrevus infusion authorization is now voided. I found this out at 9am. My appointment was at 10:30. I’ve spent the last 2+ hours on the phone with the insurance and the infusion place, crying. Knowing it will all be fixed just let me get my medicine done but that hasn’t happened yet. It’s been another awful day trying to get this infusion done and I didn’t even get the actual infusion which still may have side effects. Now a snow storm is coming tomorrow in NY. I am just exhausted from all this.”

 And a short while later she wrote:

“Somehow, someway, we are on the way. IV line in but still waiting on medicine. Happy to say my veins cooperated on the second try. Now the pharmacy called hat they only had 300mg f the Ocrevus when the orders clearly say 600 mg. Now they are calling my doctor for clarification. Where the other 300mg is coming from, I don’t know.”

 

That second 300 mg didn’t arrive that day. So, Jamie had to receive her infusion in two steps. That’s the protocol for the first round of Ocrevus but not for the second. She finally received the second 300 mg infusion a week later.

It’s not just an insurance company problem

This kind of problem isn’t unique to any single medication, pharmaceutical company, or insurance provider. It frequently seems to be the doctor who’s at fault.

For example, a user on the Lemtrada for MS treatment Facebook group recently posted her frustration about how she’s been waiting for approval for Lemtrada since November. She complained that it’s because her doctor keeps dropping the ball, failing to contact the insurance company despite several requests.

Others quickly chimed in with similar experiences.

What ‘health care’ should mean

Health care involves more than just providing medical care to a patient. We, as patients, expect to receive care that includes the paperwork; care that includes coordinating with insurance companies in a fast and efficient manner. Doctors and medical facilities should treat this as an obligation. It’s too bad that too many don’t.

(This post first appeared as my column on the Multiple Sclerosis News Today website).

MS Can Be a Kids’ Disease, too – Part 2

After I wrote about pediatric MS earlier last week, a reader commented: “I think it would behoove your editorship to follow up to address to audiences…symptoms that typify the early-age demographic.” That’s a good point. So, I drilled deeper into how MS is handled in people younger than 18 years old and found some very interesting information.

Pediatric MS diagnosis

To begin with, neurologists have a difficult time diagnosing MS in pediatric patients. One reason, according to information provided by the Cleveland Clinic, is that the symptoms generally associated with MS may overlap with other pediatric diseases, particularly acute disseminated encephalomyelitis or neuromyelitis optica. Also, MRI scans may not show enough T2 hyperintense areas to meet the criteria necessary for an MS diagnosis in an adult. 

According to a study in Current Neurology and Neuroscience Reports, determining an MS diagnosis in a youngster typically takes longer than in an adult.

“The more atypical the case and the younger the child, the more consideration is necessary before making a diagnosis of MS,” the study says.

A look at a chart published by the National MS Society gives an idea of how complex the diagnostic process can be.

Greater disability earlier in the disease

Pediatric MS may lead to significant disability at a younger age, for example, while patients are students or young professionals, or when they want to start a family. An article published in the journal Pediatric Health, Medicine and Therapeutics reports that pediatric-onset MS (POMS) “is associated with a higher relapse rate, and results in irreversible disability on average 10 years earlier than adult-onset multiple sclerosis.” A review by the authors of 20 articles published in medical journals over many years shows that “manifestations of POMS include mental and physical fatigue, cognitive impairment, and depression.”

So, there’s a need for a rapid diagnosis and treatment. But just as a diagnosis is difficult, so, too, is treatment.

Pediatric MS treatment

Treating MS in a child or young adult can be difficult because doctors lack good information about the efficacy and safety of the disease-modifying therapies (DMTs) they’re prescribing for these young people. That’s because there have been very few clinical trials of DMTs that have been designed specifically for pediatric MS patients. “As a result,” Cleveland Clinic doctors say, “children are receiving adult therapies in an arbitrary manner and our understanding of pediatric treatment effect and tolerability is limited.”

A few months ago, a 2 year study of Gilenya (Fingolimod) in pediatric multiple sclerosis was presented at the ECTRIMS 2017 MS conference. Last December the Food and Drug Administration granted breakthrough status to the drug for use treating children ten years and older. That’s encouraging.

The authors of the Pediatric Health, Medicine and Therapeutics article, however, feel that treatments need not be limited to DMTs. They write: “Participation in health behaviors, particularly physical activity, diet, and sleep, may have benefits for POMS. Nevertheless, there are currently no interventions targeting promotion of these behaviors and examining the benefits of managing the primary and secondary manifestations of POMS.”

The National MS Society has some very detailed POMS information on its website.

So what now?

Though pediatric patients may make up only 5 percent, or fewer, of multiple sclerosis patients, they’re the patients whose disease seems to progress the fastest. They also have the longest futures ahead of them. So, it would seem to be a good thing to give greater attention to POMS in order to give these young people a better chance at a future in which their MS is held in check. That includes researching both the effects of DMTs on pediatric patients and the effects on POMS patients of the non-pharmaceutical activities mentioned earlier.

Let’s continue the momentum that, hopefully, will be generated by the Gilenya POMS study and do more to address the unique problems of treating young MS patients. Difficult? Sure, but worth the effort.

(This is an updated version of one of my columns that first appeared on www.multiplesclerosisnewstoday.com).

MS Can be a Kids’ Disease, Too – Part 1

The age at which a person is diagnosed with MS is usually between 20 and 50, according to the National Multiple Sclerosis Society. But it can be diagnosed in people much younger. In fact, of the estimated 400,000people with MS in the United States, 8,000-10,000 are under 18 years old.

We older folks have some pretty good support systems to which we can turn to learn about our disease and help us through rough spots. No so much for MS kids. But that’s where Emily Blosberg and her MS monkeys have stepped in. Emily was a 15-year-old ninth grader when her MS symptoms first appeared. She was diagnosed with MS a little over a year later. It didn’t take Emily very long to realize that entering the MS world when you’re a teenager can be a lonely place. So, she tried to do something about that.

Emily started by simply trying to connect on Facebook with people who were under 18 and living with MS. She then connected with the National MS Society to create a Facebook group for MS youngsters.

Emily travels to MS events to connect with young MS patients and to help them connect with each other. Along the way she created a stuffed monkey named Oscar to travel with her. Oscar represents all young people with MS and he has his own Oscar the MS Monkey Facebook page. Oscar then became so popular that Emily had to make more monkeys. She makes each of them by hand and distributes them worldwide to kids with MS.

This has all now expanded into an MS “Buddy Bash,” a gathering of young MSers to share their experiences face-to-face. The first of these was held earlier this year when three families, each with a child with pediatric MS, traveled from New York, Louisiana, and Iowa to a camp in Wisconsin. There they shared experiences, heard from a neurologist who may have offered them a new perspective on their disease, and listened to a special education teacher explain about accommodations in schools. They also had a lot of fun, as you can see in the video below.

More help for kids with MS

Emily and Oscar aren’t the only ones concerned with pediatric multiple sclerosis. There are some activity camps available for kids with MS. Two that I’m aware of are Champ Camp in Texas and Teen Adventure Camp in Rhode Island.

The Pediatric MS Alliance (PMSA) has a membership of over 500, made up primarily of the parents and caretakers of young MS patients. The PMSA has a closed Facebook group and a website.
The National MS Society has created a network of pediatric MS centers. They offer evaluation, diagnosis, treatment, and support to families with a child displaying symptoms suggestive of any central nervous system demyelinating disorder. A child does not need to have a definite diagnosis of MS in order to be evaluated. Late last year, the NMSS published the first issue of an annual newsletter devoted to pediatric MS.

Diagnosing and treating pediatric MS

Diagnosing and treating multiple sclerosis in a youngster is not the same as it is for an adult. It’s more difficult, yet it needs to be done more quickly. Next week, in Part 2, I’ll take a look at why that’s the case.

(A version of this first appeared as one of my columns on www.multiplesclerosisnewstoday.com)

We’re Moving

The MS Wire has grown over the past year and I’m really glad that so many people have found some useful information here.

Now, I’m getting ready to take a leap to a new web host that will give me more flexibility over how The MS Wire looks and is used. The change is supposed to be seamless. Fingers crossed. However, if you have any trouble accessing the blog, or if you realize you’re to being notified of new posts, please alert me by dropping an email to ed@commstrats.com.

Thanks,

Ed Tobias
The MS Wire

Looking for Healthcare Answers on the Internet Can Drive You Nuts

I know, I know. I write about health issues on the internet, so I shouldn’t be discouraging people from looking for answers here. But, searching the internet to match symptoms with a diagnosis can be a real anxiety booster.

Emily Sohn makes a solid case for that in a recent article in The Washington Post:

“I might have jaw pain, dizziness or a stomach flu that makes me vomit. Before long, I’m wondering about heart attacks, tumors, even Ebola,” she writes.

“Usually, I manage to rationalize away my fears, especially when symptoms go away — until a new problem arises. Then, even when I try not to look, I end up online, searching for signs of my own imminent demise.”

Sound familiar? It’s not so much that writers like me are a problem. Rather, it’s the sites that allow you to enter symptoms and search for a diagnosis. Doing that can make you nuts.

Sohn interviewed clinical psychologist Thomas Fergus, of Baylor University, who says that internet searching isn’t necessarily bad. But, he says, searching online can magnify the pool of potential problems to worry about. If you’re already a person who worries about your health, that’s not a good thing. “What makes it a problem is the frequency, the intensity and the severity,” Fergus says.

Some researchers call this “cyberchondria.” This describes people who may limit their searches to information that confirms their fears while ignoring positive information, even from doctors. In the Post article, Fergus suggests that if someone is still worrying, even after doctors say there’s nothing to worry about, it might be a sign that their anxiety needs extra professional attention.

There’s also another internet-related problem: social media. I’ve written about this before. Here, the problem isn’t selective information — it’s information that’s blatantly incorrect. You can find a bunch of it on Facebook pages and blogs that are related to MS (as well as other diseases, of course). Unsupported, incorrect information is presented as fact and then people, many of whom seem to want to believe the bad information, spread it even further.

So, what can you do? I’d suggest a couple of things. First, look for high-quality sources of information. The National Institutes of Health, the Centers for Disease Control, the National Multiple Sclerosis Society, the MS Society UK, and the Mayo Clinic are just a few that spring to mind.

MS-specific groups on Facebook are OK if you understand that most posts are personal experiences and they may not apply to your disease. You certainly don’t want another patient trying to diagnose your problem. But some, being helpful, will try.

Finally, take off your “blinders” and be open to information that may not confirm what you may want to believe. Then, turn off your laptop and discuss all of your research with your real doctor.

(This post first appeared as my column in www.multiplesclerosisnewstoday.com)

Where are the Handicapped Parking Spots?

It’s nice when a negative experience can be turned into one that’s positive.

I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America, it’s a huge shopping mall just outside Minneapolis, Minnesota. Its promotional fact sheet says that the mall covers 5.6 million square feet, or as much as nine Yankee Stadiums, 10 Great Pyramids, 24 Sydney Opera Houses, or 53 Eiffel Towers.

The Super Bowl was in Minneapolis. Both football teams playing in the Super Bowl were staying in hotels at the mall, and a lot of special events also were scheduled, making the shopping center super-crowded. Because of that, the mall blocked off some parking spots near an entrance.

Among the spots that were blocked were several handicapped spaces. And when this MS patient looked for a van-accessible spot to park, she couldn’t find one. She wound up parking in a standard width spot and exiting the van through its rear door, rather than the one on the side. That meant she had to roll into a lane of moving cars and then drive alongside them to get to the entrance that she wanted to use. When she finally got into the mall and complained about the situation, she says a security guard told her the mall is private property and it can do what it wants. Needless to say, she was upset. Like many of us do when we’re upset, she vented on Facebook:

“Thank you Mall of America for blocking All of the handicap parking spaces and telling me that it was your right because it is private property.”

MOA HC spots 2

After contacting the woman who wrote the post to get details about what happened, I also contacted the PR department at the Mall of America. A spokeswoman told me that the spots were blocked for “safety and security” reasons. They wanted to prevent people from crossing the street between the parking ramp and the mall during an extremely busy time, instead, forcing them to cross using skybridges on other parking levels. The spokeswoman also offered to have an executive at the mall explain this directly to this woman.

There’s a key concept in public relations crisis management called the “Three A’s”: Acknowledge the problem, apologize, and make amends. While hardly a crisis, that’s what happened here. The angry MS patient spoke with a senior vice president at the Mall of America and the result was a good one. “There was more parking on the other side, but you wouldn’t have known that from where we pulled in,” she wrote me in an email. “We talked about placing a sign up next time, saying that there is additional handicap parking here. … He apologized for the response I received Friday night. … We said at the end [that] we all have to work a little harder to make life better for everyone.”

And there’s a P.S. to this story. It turns out that the senior VP’s father has MS. I’d like to be a fly on the wall the next time the father and son have a chat.

(This post first appeared as my column in www.multiplesclerosisnewstoday.com)

Affording Your #MS Medications…or Not

Have you been in this Catch-22?

You had great medical insurance when you were working. But, you’re not working anymore. Your insurance now comes with a $6,000 deductible and it no longer covers any medications. That $6,000 is about a fifth of your yearly income. You took early retirement because of your MS, but the pension you’re getting puts you over the limit to receive Medicaid help. You can’t get Social Security disability payments because you’re older than 62 so you’re eligible for regular Social Security benefits. But you’re not yet old enough to receive Medicare.

I recently read a post very similar to that on one of the social media sites I follow. Sad to say, that situation isn’t unique. In fact, the day I read that post, the Kaiser Family Foundation released research showing that you might have a lot of trouble paying your medical bills, even if you’re on Medicare. According to the KFF study, in 2013 more than 50 percent of the people who were on traditional Medicare (Parts A, B, and D) spent at least 14 percent of their total income on out-of-pocket healthcare costs. Twenty-five percent of them spent nearly 30 percent. Ten percent spent close to 60 percent of their income.

KFF Medicare spending chart

It would seem to me to be an understatement when the study authors wrote:

With half of all Medicare beneficiaries living on annual per capita income of less than $26,200, out-of-pocket health care costs can pose a challenge, particularly for beneficiaries with modest incomes and those with significant medical needs.”

Not surprisingly, it’s worse if you’re in poor health, if you’re 85 or older, or if your income is less than $20,000.

revisedmedicare.png

It’s probably not going to get any better

The Kaiser analysis projects that, under current U.S. government policies, by 2030 the number of people spending 20 percent of their income on health care will rise from 36 to 42 percent. This is particularly important to understand as politicians talk of paying for income and corporate tax reductions by reducing spending on Medicaid, Medicare and Social Security.

There are some ways to ease the financial crush

The Multiple Sclerosis Society of America has programs to provide, at no cost, some simple things such as cooling vests and assistance equipment. And the MSAA recently added a biggie: assistance paying for some magnetic resonance imaging (MRI) exams.

In the United States, many drug companies have programs to provide their high-cost MS drugs to patients at a deep discount, or in some cases for free. The National Multiple Sclerosis Society has an excellent, drug-by-drug, list of programs on its website.

If your drug company isn’t able to help with your copay, a foundation is a good place to turn. It takes patience and good timing to obtain help from these nonprofits, but it can be worth the effort. If you qualify for the help (there’s still an income ceiling, but it’s usually fairly high), a foundation will approve a monetary grant for you. The grant will cover your copays and be paid directly to the pharmacy that’s providing your drugs for a specific amount of time — usually a year. A list of some foundations that are paying for MS drugs is found at the bottom of the National MS Society webpage that I mentioned earlier.

A couple of suggestions from MS patients, which I found online, include:

  • If you have no insurance, see if your medical provider will give you a cash discount and/or make it possible for you to pay over time with no interest.
  • Ask your pharmacist about prices for prescription drugs using, and without using, insurance. Sometimes it’s cheaper to pay cash. You can also look up prices on GoodRx. It also pays to check different pharmacies in your area.

Will Amazon impact the future of healthcare?

Details are scant, but Amazon has announced that it’s joining with financial giants Berkshire Hathaway and J.P. Morgan to cut healthcare costs for their employees. Could this be the start of a healthcare revolution? Stay tuned.

(This is an edited version of my column that originally appeared on www.multiplesclerosisnewstoday.com)

Heavy-hitting #MS Drugs Step to the Plate

I’m sitting in Florida and the start of spring training is only about a month from now, so please forgive a baseball analogy: The heavy-hitters of the MS-fighting treatments, the monoclonal antibodies (mAbs), are moving up in the lineup.

Five treatments currently are in the mAbs class: Ocrevus, Lemtrada, Rituxan, Tysabri, and Zinbryta. (Rituxan isn’t approved as an MS treatment in the United States. Nonetheless, it’s being prescribed off-label by some neurologists). Until recently, these mAb therapies weren’t usually prescribed as the first treatments for someone newly diagnosed with MS — one or two other disease-modifying treatments (DMT) were tried first. Two reasons appear to explain this. First, some patients and neurologists were concerned about the level of risk with these therapies. Second, some insurance companies and government health plans weren’t happy with their cost.

Costs

However, a recent audit of patients and neurologists by Spherix Global Insights, a business intelligence and market research company, reports an apparent change in attitude about cost:

“While neurologists report payers being at least somewhat restrictive during the current DMT selection process, only 28% of mAb DMT-treated patients were required to step through prior therapies before obtaining access to their current DMT. This finding suggests that payer-influenced treatment sequencing may not be a substantial barrier to increased use of mAb DMTs as induction therapy (the first treatment prescribed) in appropriate candidates.”

Risk versus benefit

A similar attitude change seems to have taken place regarding risk versus benefit. The report suggests that neurologists are increasingly prescribing certain monoclonal antibody therapies for their patients even though they may feel, as a group, that mAbs pose a risk. According to the report, neurologists believe that, for certain patients, the high-efficacy benefit of a specific mAbs made its risk “acceptable.”

Bravo!

In my travels around the social media world, I regularly read complaints from MS patients whose insurance, or government plan, won’t pay for one of the five monoclonal antibodies until that patient had failed two of the more conventional MS therapies. I also read about neurologists who are hesitant to prescribe mAbs, even for a patient whose disease is progressing rapidly. Hopefully, this new report is indicative of a change of attitude by doctors and by payers that will benefit those of us who fight the MS battle every day.

(This post first appeared as my column on www.multiplesclerosisnewstoday.com)