My preschooler came home the other day with a respiratory virus, as they often do at that age. I have now been on Gilenya for a month so it would be a good test of how my body could handle it given that 80% of my lymphocytes are imprisoned in my lymph nodes.
At first it seemed that I had dodged a bullet. I was the only one in the family to have not contracted it from our little one. And then it hit me. Hard.
It’s the sickest that I have been in a while. For days, I just laid in bed, coughing up a lung. I was so weak that it greatly affected my MS. Usually, I can still walk ok; just a little wobbly. On day two of the bug, my left leg stiffened completely and I lost control of it. I couldn’t walk. I could barely stand.
Luckily in the days since it peaked, my walking is slowly returning to normal(ish). However, it got me thinking…… As we were chugging airborne, gobbling down vitamin C gummies and sucking on zinc lozenges, all of which are supposed to aid our immune system, I was simultaneously taking another drug to intentionally suppress mine. It is a lot like pressing on the gas while standing on the brake pedal with your other foot.
The only problem is that during the ten months that I was on Tec, my disability steadily got worse. My doctor said that in cases like this, we usually have to take something that tamps down the immune system more strongly. With luck, that may help to slow down the progression.
Tysabri would be an obvious option except that I am JCV+, making it risky for me. Doc said that our next best choice was Gilenya. She said that while it is still a little unclear where Tecfidera falls on the efficacy spectrum, it seems like it is closer to down by the interferons. Whereas, Gilenya seems to be closer to Tysabri. She has a number of patients that are in worse shape than I am, that are getting very good results on it.
And it’s a once-a-day pill so no needles. Sign me up.
To start Gilenya, you need to go through a battery of tests to see if you can take it. But if you pass, it is easy to take with few side effects. The battery included blood tests, a pulmonary exam, opthalmological exam, EKG and a dermatologist exam. I’m probably forgetting something else in there.
When you take your first dose you have to be in a clinic where they can observe you for six hours. The drug can cause your heart rate to drop, particularly after the first dose and they want to make sure that your body adjusts and starts to recover from it before they release you. From doses two and on, you should be all set to take on your own.
Gilenya can also cause macular edema, hence the ophthalmological exam to establish a baseline before taking the drug. If a patient develops this, it will normally occur within four months.
Gilenya works by trapping a type of white blood cells called lymphocytes in your lymph nodes. The idea being that if they are trapped there, they can’t swim around munching on your myelin. Unfortunately, that also means that they are not out there battling viruses either, making you more susceptible to serious infections.
I passed my exams and we went for it. More to come as I will provide an update on the first month in an additional post.
Multiple sclerosis medications fall into two general buckets. The first, which is the type which gets most of the attention, are known as disease modifying drugs (DMD’s) or disease modifying therapies (DMT’s). These drugs aim to slow down the progression of the disease but do not directly treat any of the symptoms.
The second group does the exact opposite. They do nothing to change the course of the disease but they try to treat a particular symptom that the patient may be experiencing. Examples include steroids to help speed up someone getting through a flareup or Viagara if the individual has lost the ability to perform sexually.
Luckily to date, I have not had to use any drugs of the second group. However, one of these drugs, Ampyra, has come up numerous times in conversations with my neurologist. Ampyra aims to help damaged nerves function better. When your immune system attacks the myelin coating on the nerve cells, potassium leaks out. The ampyra somehow blocks this, enabling better transmission of the signals.
Unfortunately, Ampyra only seems to work for 35%-40% of the patients that take it. We decided to try it and see if I am part of that lucky group.
Looking online you will see user reviews that are either 1 star or 5 stars with little in between. If it works, it is miraculous. People write of going from a wheelchair to a walker to a cane. But for most people, it does nothing at all. My neurologist said that it seems to work best on patients that are really affected by heat. Fortunately or unfortunately, that is not me.
The producers of Ampyra say that it can take up to six weeks to work. They provide you with a two month trial dose free of charge to try and see. My Doctor however says that if it is going to work, you should start to notice improvement within days.
So what could be the downside of trying it and seeing if it works?
First is cost. It’s something around $1000 per month. Luckily I have pretty good insurance so that wasn’t an issue.
The second is that this is not aspirin. The chemical in the drug is also used as bird poisson. It can cause some serious side effects including seizures. The chance of seizures goes up considerably if you take more than the recommended dose. The pill is taken twice a day, no less than 12 hours apart. I found this part to be somewhat stressful. What started as 8am and 8pm then became 9 and 9, 10 and 10, etc as I forgot to take the pill at the exact time. Eventually I was having to stay up to take the dose or just skip one and start the cycle over again early the next morning.
Six weeks into the Ampyra I developed my first new symptom in a couple of years. My disability in my left leg originally started as an odd tingling sensation in my thigh. I woke up one morning with an identical tingling now in my right thigh.
My neurologist said that it is impossible to know if the Ampyra caused the new tingling. However, at six weeks and no noticeable benefit coming from the drug, she had me stop taking it.
While I wish that I could have been part of the third that finds it to be a miracle drug, I have to admit that being on it made me a little nervous and dropping it was something of a relief.
Early on in my MS journey I had my first experience with acupuncture. At the time, I was not yet diagnosed. I just had an occasional odd tingling in my left thigh. At the urging of my wife, I agreed to try her acupuncturist for a sore back and neck that was plaguing me. I went a few times and while it did nothing for my back, I curiously noticed that the tingling sensation in my leg disappeared for a few days each time.
Fast forward to today and we now know that the tingling was an early symptom of multiple sclerosis. My disease has progressed a bit in that walking normally is becoming increasingly more difficult. I thought that it might be time to give the needles another try and see if it can help with my current symptoms.
The acupuncturist said that to give it a fair shot, I would need to go once or twice a week for at least six sessions. I agreed to that plan. Meanwhile, I researched online and found a study that claimed to have success with MS by using a certain type of scalp acupuncture. I didn’t mention this to the acupuncturist, but apparently he was aware of it, or at least found it online like I did.
In my first of six sessions, he performed many of the standard spots like he had a year earlier. Unfortunately, there was no effect. For sessions two through six, he focused on the scalp and gradually increased the intensity of the treatment each time.
The typical acupuncture does not particularly hurt. In fact, it is somewhat relaxing. The scalp acupuncture, on the other hand, hurts a lot. For the typical, you can barely feel it as he flicks the needles into you. For the scalp, he pushes them in, guiding them up under the skin. In later sessions he would also twist and move them around for more stimulation. Ouch!
I had mixed feelings. I really wanted this to help with my disability, even if only temporarily. However, the thought of having to be tortured like this once or twice a week, possibly forever, wasn’t terribly appealing.
Four weeks and six sessions later, I had no change in my symptoms at all. I was disappointed but at the same time relieved at not having to get my head stabbed anymore. I have no doubt that acupuncture may work for some people with some conditions. For me though, the book is closed. Onward to something else.
In my last post I was expressing concern that my MS might not be the remitting recurring type that most people get, but might be another form called primary progressive. This is a problem in that there are currently no disease modifying medications approved for PPMS. One drug for RRMS, Gilenya, was in late trials for PPMS and many people had their hopes pinned on it. My doctor had been talking about switching me from Tecfidera to Gilenya anyway so my thought was that I might be covered whichever form that I actually had.
Unfortunately, the day before my doctor’s visit, Novartis announced that the Gilenya trial for PPMS failed. It did not have a statistically different effect than the placebo had. I brought up the possibility of PPMS with my doctor.
My doctor made a case that I do not have PPMS and that it makes sense to treat it as Secondary Progressive MS. This is the form where a person has remitting recurring MS and at some point it doesn’t remit anymore and gradually gets worse. My original MRI scans showed active lesions on the brain and were more typical of RRMS. Then I got on disease modifying drugs fairly early. She felt that this may have prevented new flareups that are common in RRMS. It’s just that my initial symptom never completely remitted, which can happen sometimes.
Given that there are not any different treatment options available for PPMS, I guess that sounds good to me and we will go with it.
As I mentioned in my last post, MS comes in four flavors. Since 85% of those afflicted have the relapsing-remitting type (RRMS), most people start with an assumption that this is the version that they have. Some of us hit a point where we have to start to question if we actually have Primary Progressive MS (PPMS) instead. I am at that point now.
Let’s start by looking at some of differences between RRMS and PPMS.
RRMS has periodic flare-ups that largely or completely go away, only to come back again later. PPMS has just a steady deterioration. Looking back on the progress of my disease, it has been a slow steady deterioration. I may have some days that are slightly better or worse than others, but I have never all of the sudden had an exacerbation. Nor have I woken up and found that my leg was back to normal. My strength and coordination in my left leg has just very slowly gradually gotten worse. I used to think that my MS medications were just preventing any flare ups of new symptoms. More and more I am suspecting that this is not the case; it may just be PPMS.
Demographics. RRMS occurs in two to three times as many women as men. It usually first pops up it’s ugly head in someone’s late teens to 20’s. PPMS on the other hand, usually begins in someone’s 40’s and afflicts men and women equally. I am a male and my MS began in my late 40’s.
RRMS activity tends to show up in the brain more and the lesions have more inflammation. PPMS tends to show up more in the spinal cord and have less inflammation. I remember my doctor looking at my MRI done with contrast last year and saying that it looked good with little evidence of new inflammation. We attributed it to the Rebif that I was on working. It could be. Or it could just be that it’s PPMS and taking the Rebif was coincidental since it’s generally accepted that the interferons like Rebif don’t do much if anything for PPMS.
MS can manifest itself in many ways. RRMS runs the gamut from eyesight, strength, balance, cognitive, bladder control, sexual issues etc etc. Any of these can also occur with PPMS, but the most common symptom is trouble walking and mobility. To date, walking/mobility is the only symptom that I have experienced.
What difference does it make and what does it all mean from a practical perspective? The only advantage that I can think of for PPMS is that it is more predictable. You know what you have and that it will gradually get worse. There is less of a concern that you will all of the sudden wake up one day unable to see out of your left eye for a week. The biggest disadvantage of PPMS is that it doesn’t respond as well to medications. In fact, all of the disease modifying drugs approved for use in the U.S. currently are just for RRMS. With some luck, that may be changing.
In my next post, I will dive deeper into my treatment options if we suspect that I may have PPMS.
By far the most common is called Relapsing-remitting MS (RRMS). Approximately 85% of people with MS have this type. It’s main characteristic is that the individual has symptoms that come and go. After a flare-up or exacerbation of a symptom, the symptom will partially or completely go away. Early on, this gives many people false hope that the disease has passed them by. Unfortunately, the symptom or new ones will eventually come back.
Most people with RRMS eventually progress to Secondary-progressive MS (SPMS). The individual’s symptoms may have remitted and relapsed for 10 or 15 years, but reached a point where they stopped going away. Typically from this point on, the symptom or symptoms gradually get worse going forward.
The third type is Primary Progressive MS (PPMS). With this version the patient does not have distinguishable flare-ups, nor do their symptoms ever go away. There is just a steady progression of the disability.
The fourth type is also the least common. Progressive-relapsing MS (PRMS) is characterized by steady deterioration as in PPMS, but with occasional flare-ups on top of it. The flare-ups may or may not improve, but the basic disability underlying it continually progresses.
There are a few common differences between RRMS and PPMS. That will be the topic of my next post as we try to determine which variant I have and the path of my treatment.
I was starting to think that I might never golf again. I last played a year ago and it didn’t go well. Besides just not playing well, I ended up having a foot drop for the first time the following few days. I chalked it up to the heat and exertion causing me too much fatigue. After that experience, this summer I lied about a back injury to get out of playing with colleagues in 100 degree heat.
Recently I found myself in the same circumstance of being expected to play with colleagues. However, I am happy to report a much better outcome.
I went to the driving range a decent amount in the weeks heading up to the event to help my body get extra practice adjusting for my compromised balance. I also went to try and build up as much endurance swinging a club that I could.
But most importantly, this time I was smart and conserved my energy as much as possible for the day prior to and the day of the golf. I was at a resort where my room was a five minute walk to the main lobby and where our meetings were held. Normally I would have enjoyed the walk on the beautiful resort. This time I wimped out and had the shuttle guys who drive guests around the complex give me rides back and forth each time. I also made a point of sitting and relaxing whenever I could, rather than walking around.
The conservation of my energy pre golf worked. I was relatively rested and in good shape for when we tee’ed off. I was also aided by a bit cooler temperature, a late start and an early sunset. When we got to the turn, it was already getting dark and at most we would have only gotten another hole or two in. We opted to head into the clubhouse.
So I only actually played nine holes, but it was very enjoyable and I played decent given that I haven’t been on a course in a year and I am pretty sure that no one noticed my unusual gait. This is just one more example of something that is ten times as enjoyable when you know that it may be your last time. You really appreciate that you can still do it.
A sober drunk is probably the most common description that I have seen used by someone with MS explaining what it is like to have the disease. I think that it is fairly accurate. In fact, in my very first post I talked about how I distinctly remember the first time that I noticed something wasn’t right. I was walking down a city street with colleagues and felt almost like I had been drinking, but I hadn’t.
With MS you can be completely sober, yet unsteady on your feet. As you walk across a room, you might bump into chairs or at least place your hand on the backs to steady yourself. You will bump into walls or guide yourself along them. Going up or down steps, you will hold onto the rail for support. You will find it difficult to walk in a straight line or to stand still without wobbling a little, especially with your eyes closed. In other words, you have the same balance and coordination issues that you experience when drunk. Except that you are not.
Red Bull and vodka has become a popular, if not dangerous, cocktail. Why is it dangerous? Because you don’t notice when you are getting drunk and that can easily lead to over-drinking. Typically when you drink alcohol, you feel tired. The energy drink offsets this. If you are sitting down drinking red bull vodkas, you will feel alert and energetic; almost sober. Until you stand up to go to the restroom and realize that you can’t walk a straight line as you stumble across the room. Having MS is a lot like that. Sitting there you will feel just as normal as you always did; until you get up.
And of course, you can’t just drink some water, take an aspirin and sleep it off.
I am generally a pretty honest guy. Life is complicated enough as is. Having to keep track of different falsehoods that were said to different people just isn’t worth it. Things are a lot simpler to organize if they are consistent; which means telling the truth.
That having been said, I am in a position where I feel that I just don’t have much choice sometimes. My MS is a secret known only by my closest family. I am very confident that when I come out of the closet about my MS, that my earning potential will be negatively impacted. If it isn’t necessary yet, that’s not fair to my family.
My first cover up occurred about a year ago. I was walking with a colleague and stumbled slightly stepping off of a curb. He asked if I was alright. I blamed it on my new glasses. There is a small element of truth to this. It was the first time that I wore progressive lenses and I wasn’t accustomed to the ground being out of focus yet. Coincidently, he had also just switched to progressives and was struggling with getting used to them.
My second time just occurred and was a bit more of a blatant lie. I was scheduled to play in a golf tournament with work colleagues. This presented a few issues:
I hadn’t played in almost a year and had not gotten out to the driving range like I had planned. This was a tournament, which meant that I would be dragging down the whole team.
It would be four hours of them closely observing me walking across open spaces. That’s more of a chance that someone would notice that something didn’t look right.
It was almost 100 degrees out and we would be playing in the sun in the heat of the day. Overheating can often contribute to flareups of symptoms with MS and should generally be avoided.
So I lied.
I claimed to have hurt my back. It’s pretty common with out of shape guys my age and fit the situation well in that it would make golf very difficult but not prevent me from doing much else. I went to the tournament and joined everyone for drinks and dinner, but did not golf.
It was a little frustrating to watch the guys playing from the clubhouse window and wanting so badly to be out there. However, I am convinced that not playing in the heat was the smarter move for my health.
I also felt bad about lying to colleagues and friends, but I am still convinced it was the right thing to do for my family and career. Sometimes we have to do what is needed to survive.
Hopefully I will not have to lie about my condition too many times. The lesson learned is to plan better and not get myself in circumstances that force me to make these decisions. In hindsight, signing up for a golf tournament in the heat of August with work colleagues should have been recognizable in advance as a dumb idea.