My doctor has taken a rather aggressive approach to my MS treatments. He’s basically anti-lesion, so it seems whenever he sees new lesions on my MRI, that’s the end of the road for whatever “therapy” I was currently on. Now, it’s important to mention I’m a terrible patient. I’m only as involved in the decision making regarding my medicine as I have to be. Honestly, the whole thing stresses me out and I kind of unconsciously shut down and stop receiving the very information that I really should be paying attention to. It’s a form of my denial. I’m working through it…cough, cough.
My personal method for making decisions regarding my MS treatments you ask? Prayer, and trust God to communicate wisdom to my doctor, and protect me while I’m at the mercy of modern medicine. That’s it. Naive? Maybe. But in the overwhelming sea of medical options, it works for me.
Without actually counting, I can’t even count how many different MS medications I’ve been on. It’s possible I have exhausted all but one or two, and the only reason I haven’t been put on either of those is because, one of them is very similar to a drug I’ve already been on, so Dr. Neuro thinks it’s not for me, and the other requires monthly mandatory blood draws and other work on my part, and Dr. Neuro knows me well enough by now and therefore thinks that one isn’t for me either. Basically, he says my lackadaisical approach to this disease makes me not a candidate for a medication that potentially could have very serious side effects and he thinks I’ll just blow off the monitoring. It’s possible. I have been known in the past to wait a little too long to seek medical treatment. Like I said, I’m a terrible patient.
Below I offer for your reading pleasure nearly fourteen years of MS treatment experience.
Copaxone: This was my first MS treatment after being diagnosed in October 2004. My understanding is that this is the first MS treatment for most of the newly diagnosed. Possibly, it is a mild drug with mild side effects so it’s appropriate for newbies, but I would disagree for one specific reason. This is the only MS medication I’ve been on that requires daily subcutaneous injections. How in the world does it make sense to a pharmaceutical company and neurologist that a patient who has no experience with a disease, or daily syringe handling, should automatically be given a medication that requires the burden of a once a day injection? Although, I do realize there is very good reason for this, such as the alternative therapies being not so mild. I’m just making a point. The pharmaceutical company is kind enough to send out a nurse to teach administration, but this alone is not enough preparation for real-life usage, only experience accomplishes that. For ease of use, this medication includes an “auto-ject” device to administer the shot with the push of a button. Additionally, the Copaxone filled syringe needs to be kept refrigerated — not exactly convenient for trips. Because not only does it need to be kept cold, it needs to be brought to room temperature for 30 minutes to reduce injection pain. The mere fact that this medication does not allow any breaks in days of injections, makes it silly to me. Injection site irritation and burning were about the only side effects I can recall, besides the side effect of having to dispose of mountains of needles and Sharps containers. This was a short-lived medication for me, when after a year of my diagnosis and subsequently placed on this medication, I was given another MRI which showed more lesions and disease progression. Bye-Bye Copaxone.
Rebif: When I think of Rebif, I think of the color turquoise, their obvious marketing choice of color. Rebif is also administered intravenously, but rather than daily injections, it is three times a week. In theory, this sounds doable, but keep in mind that three times a week actually translates to about every other day, with one additional gap day in between. And once again, a nurse is sent out to give instruction, as well as provide a sweeeet lunchbox/ice chest to use when traveling, because again, this medication must be refrigerated, and must be brought to room temperature prior to injection to avoid the pain experienced by the injecting of cold, medicated, syrup into your body. One of those “most common side effects” of this medication is “flu-like symptoms”. I’ve yet to hear of someone who did not experience these flu-like symptoms. Therefore, I’m thinking they should simply list this uncomfortable post-injection effect as a guaranteed side effect rather than a common side effect. Like clockwork I would awake each injection night with severe body aches and chills. Not to mention the day following injection night was always filled with more fatigue than the day before. Regular consumption of Ibuprofen was always crucial, and injection site irritation was overwhelming — half dollar to small saucer sized pink inflamed spots polka dotting the fattiest eight sections of my body — this medication was not received well and I despised everything about it. Especially the fact that it didn’t work for me, and each of the two times I was placed on it, I experienced flares to existing symptoms, as well as a couple new ones. Furthermore, both of my Rebif experiences included gaining an added 5-10 pounds. Oh joy. Thankfully the same 5-10 pounds came off immediately when I was taken off Rebif. Needless to say, Rebif wasn’t a fan of me and I’m not a fan of Rebif.
Avonex: If it were possible to accurately communicate and rate a medication in two words they would be shoot me, pun not intended. Intramuscular medication should never be self-administered. It’s impossible to get used to stabbing oneself once a week with an inch and a quarter needle. Flu-like symptoms – CHECK. Fatigue – CHECK. Injection site irritation – CHECK. Auto-ject device to aid in administering…..non-existent. Not to mention effectiveness – no check. Each week I mentally prepared for someone to stab me so I wouldn’t be forced to stab myself. My mom lived next door at the time and could usually assist me. Even with her years of experience as a phlebotomist, the injection always hurt, and I dreaded it. And again, flu-like symptoms haunted me as the most common side effect. More than once I sabotaged my own “shot night”, just to avoid all the above. And to add further insult to injury, it was becoming no surprise to have new lesions show up on each annual MRI. In the first five years of having MS, I didn’t go one year without new symptoms, in fact, I doubt I went six months, and MRI’s would always confirm disease progression. All my medication misery was failing to protect me in the way it was supposed to, so I began to learn adaptation as a means to life with lesions and symptoms. Avonex only lasted a year until I convinced my neurologist to allow me to go a somewhat unconventional route….
Low-Dose Naltrexone (LDN): Originally designed to help Heroin addiction when given in its full dose, Low-Dose Naltrexone has filled the internet, as well as MS patients like me, with stories of hope about its effectiveness in MS. I honestly have no idea how it works, but it is an oral medication, so it scores high in my books for that alone. LDN is a compound medication, which means it has to be filled at a specialty compound pharmacy, and is made to order by the pharmacist by mixing and matching a recipe developed by the experts who figured out that somehow Heroin addiction and Multiple Sclerosis are somehow related in a smaller dose. What??? I was desperate, and honestly, I was exhausted from injectable medications that simply didn’t work for me. The initial downside to LDN was a small prescription copay of I think fifty dollars, if my memory serves me right, whereas the MS approved drugs were covered 100%. I prepared myself for the interrupted sleep and claims of vivid dreams or nightmares, as described on various websites discussing LDN, of which I experienced almost none of, and I also prepared myself for miraculous results, of which I also experienced almost none of. In the end, after six months of LDN, I temporarily lost a portion of my vision in my left eye due to optic neuritis, and Dr. Neuro stripped me of Low-Dose Naltrexone faster than I could say Low-Dose Naltrexone. Then for a time he weaned me off all medication in order to qualify me for my next adventure, the participation in a medical research study.
Gilenya: Just as I was suffering major frustration and grief at the awfulness and ineffectiveness of my history of injectable MS therapies, a medical research study was forming to recruit eligible MS patients in the use of the first FDA approved oral medication for Multiple Sclerosis. There were so many advantages to participating in this study. First, if chosen to receive the medication, the study included a year’s worth of medication, as well as MRI’s, which usually cost me a hefty co-pay. Secondly, whether chosen in the placebo group or not, I would be needle free and flu-like symptom free for at least a year. And thirdly, I was paid to participate in the study (I can’t remember how much, maybe $500 for one year.) However, there is a downside to research studies: typically, they are very time consuming. These studies require more appointments with physicians than would be the norm if I were not in the study. These appointments are very valuable, and were at no cost to me, but at the time when I was having to get babysitters for some appointment every two weeks, this can become wearying. Included in the appointments were various tests on my eyes for the optic neuritis by a Neurological Ophthalmologist, regular, and unnecessary at the time, mobility range monitoring, cognitive function evaluations, and reviews by Neurologists who specialize in areas that Dr. Neuro does not specialize in. To me it’s a win-win-win. I loved Gilenya. I felt great on Gilenya. My before and after MRI’s showed otherwise, and surprise and disappointment hit me like a ton of bricks, and we were back to square one.
Tysabri: This medication was the first therapy that I understood how it worked. Dr. Neuro explained, “Imagine you’re on the New Jersey Turnpike, and all the toll booths are open. That is how a normal immune system functions. Tysabri shuts down all but two toll booths.” Wow. Sounds…dangerous safe. Not to mention I’ve never been on the New Jersey Turnpike, but that’s neither here nor there. He mentioned just one other little tiny detail, this medication has killed a few people. Apparently, there is a condition called PML. An acronym for an unpronounceable combination of words by anyone but Dr. Neuro. My understanding of PML is that it turns off an electrical switch in the brain which makes the heart stop. Instant death. The virus that causes this electrical brain malfunction, and is “made active” by PML, is called JCV (another acronym for a set of words not worth expanding on) and JCV is only made life-threatening by certain medications that can cause PML? Apparently this JCV virus has antibodies in the blood, so the standard precaution taken prior to being placed on Tysabri is a unique blood test to test for these antibodies, which at the time, could only be done at certain laboratories that were not in the town I lived in. I discovered this little detail when I decided to go to the local hospital to get my blood drawn, as they said they could send it to the lab I needed. Next thing I know, Dr. Neuro’s office called me, and the woman in charge of helping patients navigate all these difficult medical world nuances, spoke in the most affirmative and stern voice I had ever heard come out of her mouth, “SHANNON, NEVER, EVER, GET YOUR BLOOD DRAWN AT A HOSPITAL. I JUST SAVED YOU A THOUSAND DOLLARS!” And that was that.
Needless to say, I tested negative for the JCV antibodies and was placed on Tysabri. As a requirement, these blood draws are necessary every six months as the virus is present in many people and can be acquired at any time. And again, it’s not dangerous unless turned on by certain medications that can cause PML…ooook if you say so Dr. Neuro.
Tysabri was my first experience with MS therapy by infusion (intravenous). It’s administered every four weeks and takes about 2 ½ hours. The infusion center was a pleasant experience for the most part, but it seemed every time I turned around this Tysabri appointment was approaching again, and with the two-hour round trip drive, many times I just simply didn’t want to make the time for it. But I did. For two and a half years.
Tysabri and Shannon took some time to adjust to each other. I hated Tysabri at first, and apparently it hated me. For the first three weeks I was a crazy person. Literally I felt so foreign to myself, I was having wicked thoughts that were all over the place from severe sadness to anger to suicide to divorce. Most of this I kept to myself, except for the sharpness and edginess that was obvious to everyone in my house. I specifically remember calling Dr. Neuro on his cellphone one morning the week before I was due my second infusion and very matter of factly telling him through a few tears, “Get me off this drug I hate it.” I intentionally didn’t expand on the specifics of what I was thinking and feeling so as not to end up in a padded cell. He heard me out, and warmly told me he would take me off if necessary, but to get my second infusion because he felt confident I would adjust. And just like that within a week I adjusted and felt like myself again. One other side effect I clearly remember is being extraordinarily tired for the first two or three months on infusion day. A tiredness like when you have the flu; a deliriousness that ONLY sleep remedies.
Unfortunately, even after feeling like this was an effective MS therapy for me, and Dr. Neuro agreed, we had two obstacles. One, at the time, this medication usually only had a three-year maximum usage due to PML. Secondly, I received the worst MRI results I had ever been read. “Extensive change” and “Multiple new lesions” will forever ring in my mind as I consider my time on Tysabri. And it’s worth mentioning that because I had such a terrible time adjusting to Tysabri, I was terrified of getting off it, but at least I was prepared for what might occur. Thankfully, Tysabri wasn’t nearly as destructive when it exited my body as when it arrived, but many, many edgy days were there to prove that this stuff means business.
Rituxan: As I sat in the room with Dr. Neuro he said to me with as much defeat as I felt, “I don’t know what I’m going to do with you, you’ve exhausted all the available MS approved medications. There’s one we’re hopeful about, but it’s just not ready yet. There’s another one, it’s had really great results in MS, but it’s off-label. It’s only been approved for Cancer. It might be an insurance and financial hurdle, but I’d like you to go on it. (For the record it was a financial hurdle!) Since you’re so damn susceptible to every single side effect of every single medication we put you on, you’ll be happy to know his one has minimal side effects. But I must tell you, a small percentage of people have developed cancer while on this drug, and there’s a chance of hair loss.”
At this point, besides the blank look in my eyes, a part of me was like, whatever. It’s the only thing left. Rituxan also is administered intravenously at a hospital or infusion center. It’s an all-day affair, but at least Rituxan is only given every six months. I’m not sure how that works, but I must trust that it does. My first Rituxan infusion appointment I brought like nine million things to do to pass the time. Dr. Neuro had told me that I would get two types of “premedication”, Benadryl and Steroids (Solumedrol) to help in the event of a medication allergic reaction, which apparently must be quite common if they give every patient this “premedication’”. A laptop, a stack of mail to deal with, two books, some writing goals, and hours later all I did, all day, was sleep. Apart from many minutes lost due to the muscle spasms in my legs that would wake me continuously all-day long. Dr. Neuro mentioned the Benadryl and Steroids would likely cancel each other out, but it didn’t have that effect on me. Less than a minute after the Benadryl was pushed through my IV, a heaviness covered me, my vision was blurry, and I couldn’t have read if I wanted to. Sleeping made the time pass beautifully, and for the first time in my life, I couldn’t care less what was happening in the outside world. As a self-proclaimed control freak, I was shocked that I was so tired and out of it, nothing could steal my attention. Nothing concerned me. Except sleep. Other than its pre-medications, Rituxan was possibly the easiest medication with the least side effects. I honestly can’t think of any. Although I’ve noticed my hair got thinner in the front bang area, so now I don’t like having real bangs like I normally have, but this can also be caused by my ripe old age of 38-40 while on this medication?
Ocrevus: Because Rituxan was off label, it was a process and headache to get it paid for and left me with a huge co-pay. My infusion center was very skilled in helping me get funding to assist me, but it was an every six-month stress causing event. Ocrevus, on the other hand, supposedly is near identical to Rituxan in nature, but approved for MS, therefore less of a funding obstacle. Like Rituxan, it is administered every six months, except for the first dose, it is split in half and given two weeks apart to allow the body to adjust. This past week was my second dose. Ocrevus has not been as gentle of an adjustment as I’d hoped. The premedication is the same, and like when I had my Rituxan infusions, the Benadryl slurred my words, blurred my vision, and knocked me out. But Ocrevus includes Tylenol in its premedication, as fevers are sometimes present after receiving Ocrevus. The infusion went smoothly, and again I took a beautiful five-hour nap. And this time I brought Baclofen with me to combat my irritating muscle spasms that always go bananas after taking anything that causes drowsiness (more on Baclofen below). However, the day after my first infusion I noticed a few symptoms I hadn’t had prior to Ocrevus. For starters, I was really, really tired. Even after plenty of sleep, I was still plenty tired. After about a week and a half of Ocrevus, I was noticing I would have a few hours a day when I didn’t feel overwhelmingly tired and fatigued, but it would always return. Secondly, this medication has given me a consistent low-grade fever. Every. Single. Day. Most of the day I run a low 99 degrees, and then every day at around two o’clock, it increases to closer to 100 degrees. Although, now that I’m going on three weeks of the Ocrevus, the fever isn’t as consistent and seems to be more hit and miss. Thirdly, there are mild chest symptoms that mimic a bacterial or viral condition. Chest tightness, small dry cough, occasional burning in the base of my throat. These bronchial symptoms are inconsistent, but typically increase with activity, like cleaning, or heat, like a fever. The first two weeks there were various moments of a feeling of being cold, but with more of a Bengay type of burning cold, than the standard chills that ordinarily come with a fever, but this has passed. I thought it would be smart to call Dr. Neuro a couple of days prior to my second infusion to tell him of my lingering Ocrevus side effects and make sure I should go through with it. Let me tell you something about Dr. Neuro, the day I was diagnosed thirteen years ago, he gave me his cellphone number. I never have taken advantage of this, but he has welcomed my call innumerable times and helped me like no other doctor I know. So, on this particular day, when I called him, he answered from the table of a medical conference seated with other colleagues. As I explained the reason I was calling, and the symptoms I was experiencing, Dr. Neuro consulted someone at the table about me, and then assured me he thinks I will adjust and to go ahead and get my next scheduled infusion. He suggested taking Tylenol and Benadryl, and he firmly finished with TAKE IT EASY. Only time will tell if these Ocrevus related side effects will pass, but for now I don’t have to think about medication for six months, and that’s a wonderful thing.
Before I close this unsolicited review, I must include a few other MS related medications, although they are not MS therapies, they specifically are for symptom management. Solu-Medrol (Steroids) for example, is a fantastic anti-inflammatory drug regularly given in high doses to squash a severe MS attack (relapse). The beauty of it is that it makes you feel like you have a super power of not needing sleep while still being able to conquer the world. It also gives a wonderful, youthful rosy cheek look as a bonus. The down side, it gives a gross metal like taste in the mouth (fully tolerable with Jolly Rancher candy), as well as can damage hip bones, which it did mine, but I think over time they can repair themselves because my hips hardly ever bother me anymore. At a time when I thought I would have extreme debilitating vertigo forever, among other symptoms, Solu-Medrol aided my body in reducing inflammation enough to make me feel normal again, so for me it was a life saver.
Gabapentin (Neurontin) is a drug used for nerve pain. Many, many years ago I suffered from a burning and electrical shocking sensation in various parts of my body caused by nerve damage from MS. At that time, I was prescribed this Gabapentin. It was highly effective, but unfortunately needs to be increased at some point since the body builds a tolerance. Although it was prescribed as a “twice a day”, I could not take it twice a day because it made rather loopy, with a side of euphoria. But probably the worst part about this drug is that, for me, it seemed to cause nerve pain. When I would skip a dose, I would be in more pain than I was prior to it being prescribed! Sharp, burning, stabbing achiness all over my body. And for some strange reason, this drug is given out like candy, like it’s harmless. Because my MS is relapsing-remitting, I was hopeful after a year on Gabapentin, I would be able to wean myself off in hopes my nerve pain issues had remitted. Although it took months for this stuff to get out of my system, once it was out, my nerve pain was totally gone.
Baclofen is a muscle relaxer that beautifully targets MS muscle spasms. Unlike other muscle relaxers, it is slightly weaker in nature, and if you happen to be awake when it kicks into gear, it just makes things a little blurry, and sleep is very inviting. Unlike, other muscle relaxers I’ve been told give the appearance of drunkenness (I’ve never had a need to try them). Baclofen works well as an “as needed” muscle relaxer for spasms because, it doesn’t work well with consistent use. And my prescription says I can take four at a time, although when I went to my Ocrevus appointment I brought only two. The first appointment two worked perfectly, the second appointment, two hardly worked at all and my muscle spasms woke me up constantly. I can’t imagine what I looked like to the other patients in the room as my legs and feet spontaneously jerked every minute or less, but when on Benadryl, who cares! And for the record, if you’re tempted to think Benadryl has never affected you like I described, try getting it through an IV. I assure you it’s different. In fact, Dr. Neuro had me take an oral Benadryl over the weekend, and it only slightly made me groggy. But I have read of a few people not experiencing intravenous Benadryl the way I did, so go figure.
I’ve exhausted this post. If you’ve reached the end and you’re still awake, wow, thank you. But the purpose of this post was to possibly help one individual in their medication journey, as well as keep a record for myself, since this kind of information is easy to forget, and I had to rely on my memory to complete this, so there may be some errors. This disease potentially has decades of future years to relapse and remit and bring new unfortunate experiences, and it’s important for me to document this voyage.
I’ve intentionally underlined the medication names so that the post can be scanned for where it may apply to an individual. Pharmaceutical drugs are a tricky thing, when they work, they are life changing. When they merely cause more side effects and damage than aid in symptom relief, they become a vicious intruder for those of us who suffer from them. Most importantly, be guarded, because these drugs no matter how effective, are not God. And therefore, I trust all of this, good or bad, to Him.