I get a lot of questions about the medications I’ve been on, and it’s certainly a laundry list. These are only my unique experiences and I do not have any sort of medical background. Just because many of these treatments didn’t work for me, that doesn’t mean they won’t for you!
This post is written more like a journal entry, so I apologize at the length and if it seems all over the place. I didn’t want to forget anything. 🙂
My introduction to multiple sclerosis treatment came on the day I was diagnosed. On top of recovering from a lumbar puncture (or spinal tap), I incidentally had a really bad attack just hours before my doctor’s appointment. To assist with my body’s response to all the angry inflammation, my then-neuro (Dr. Sweet Granny) prescribed a Solu-medrol infusion–five consecutive days of hour-long potent steroid IV drips.
I was only able to handle two of the five prescribed days of treatment, so I cut this little fling short. The steroids brought on horrible joint pain, particularly in my hips, knees, and ankles. There was no relief and it took over a month for this to start going away. I also could not fall asleep while under the influence of Solu-Medrol and everything I ate tasted like old, dirty pennies.
2. Avonex (Interferon beta-1a)
On the same day that Dr. Sweet Granny ordered the steroids, she also prescribed Avonex, a once-weekly intramuscular injection. I wasn’t thrilled about this, but given the longevity and success of this medication, I was willing to give it a shot (seewhatIdidthere?).
I had to have a nurse come to my house several times to train both myself and my husband how to administer the drug. I had Sharps containers and training DVDs show up on my doorstep. I was given a diary to keep track of injection site rotation and side effects. I had to remember to keep the medication at a particular temperature, but then bring it to room temperature for a certain amount of time before injecting. I had to remember to pre-medicate with Ibuprofen to help alleviate the flu-like symptoms the following day.
I realize these really are #firstworldproblems, but at the time and having no previous medical history, it was overwhelming for me. Mentally, I felt sick. I never was able to inject the medication myself. Thankfully, my husband agreed to do it every time, while I sobbed into my confused miniature dachshund puppy.
I was on Avonex for only five weeks (only one full dose after getting through the titration kit). I was becoming severely depressed, a common side effect–yes–but it was bad enough to make me jump ship immediately. In retrospect, some of that probably had to do with me failing to cope with my recent diagnosis. I can’t be sure.
3. Heavy Duty Long-Term Antibiotics
At this point, I was in denial about my illness and I was referred to an integrative health doctor. We will call her Dr. Bully. She was convinced I did not have MS, but was sure I had chronic Lyme disease. That, of course, wasn’t out of the realm of possibility, but after over six months on some macho antibiotics and weighing out the possible long-term side effects, I stopped taking them.
Oh boy. LDN. Where to begin?
Naltrexone is not an approved treatment for MS–it’s actually used to treat opioid addiction, but when taken at a very small dosage, MS patients have experienced improvement in their symptoms. It’s a generic drug and has to be ordered through compounding pharmacies, so it’s inexpensive (about $24 per month, rather than the typical $5,000-$7,000 per month for approved MS treatments). It really seems like the ideal treatment (nightly pill, affordable, no major side effects), but just doesn’t have enough research backing it up (yet).
LDN was strongly recommended to me by a friend (last seen here). She has been taking it for many years and has had such a positive experience with it. So I asked my latest neuro (Dr. The Worst) to prescribe it. She laughed at me, but eventually gave in.
You’re instructed to take LDN about half an hour before going to sleep at night. LDN gives you vivid dreams and also can cause side effects similar to opioid withdrawal…so it’s best to sleep through it. The first day or so was okay, but then I started noticing how dry my mouth was. There was no relief. And then my eyes got very, very dry. It affected my vision. With my phone’s font size set to the largest setting, I was still unable to read any text on my phone. I also noticed that if I got up in the middle of the night to go to the bathroom, I was very dizzy and unsteady. I was told this sometimes happens as your body acclimates to the drug and that it would likely subside within a week.
This next bit will be a little foggy, as I only remember bits and pieces, but most of this is what was told to me by my husband after the fact.
A few days into taking LDN, I woke up in the middle of the night speaking in tongues. My husband says it was all nonsensical, but I believe I woke up feeling like I was choking and was asking for water…but my mouth was so sand-dry, he couldn’t understand me. Both of us were in different states of consciousness and, due to my inability to communicate and his to understand, we got into a pretty heated argument. I went to go to the bathroom, but my husband said I was walking as if I were extremely drunk–unable to walk in a straight line, knocking into walls, etc.
I had been gone for awhile and, at some point, my husband came to check on me. He came into the bathroom, flipped the light on, and found me clinging to the wall like a bat.
That’s when he decided we should go to the emergency room. I put up a hell of a fight and he ended up having to carry me down the stairs (which I allegedly found to be HILARIOUS). Once there, I informed him I still hadn’t gone to the bathroom. He followed me into the downstairs bathroom, where I promptly lifted both the toilet lid and the seat and grabbed a washcloth and a toothbrush holder. He asked me what I was doing and I told him, very matter-of-factly, that I had to make cupcakes…..and then I walked out of the room.
I vaguely remember getting into our car, where I then blacked out. I can kind of remember waking up when I heard my husband on the phone, but then I passed out again. I woke up in the parking lot of a hospital ER, where I’m told I made it my mission to gleefully stomp in every rain puddle in my path (which is very different than how I remember the bottoms of my pajama pants getting wet).
I don’t recall waiting in the waiting room, but I do remember a tech asking me if I was okay to pee in a cup. I responded with a hearty “HELL YEAH!” and offered a high five. I remember putting the empty cup on the bathroom sink. That’s where the nurses found it later, still empty.
I woke up in a hospital bed, attached to monitors and my husband and my mom were sitting in chairs next to me. Still in a dream-state/night terror, I remember feeling like I did something wrong. The rest of the time in the ER was spent drifting in and out of consciousness, sprinkled with foggy recollections of removing all of my jewelry for a CT Scan and getting hooked up to an IV (for fluids, I think).
I, of course, stopped taking LDN that day and offered the remaining nearly-full bottle to my friend who initially recommended it. I know you’re not supposed to do that, but what can I say?
Despite her taking this medication for many years and at a higher dose than what I was given, she had a similar scary experience the very first night she took it. The silver lining here, however, is that my night in the ER wasn’t due to an allergy to the medication–it was likely just a really bad batch.
5. Gilenya (immunosuppressant)
After Dr. The Worst laughed at my experience with LDN and offered a snide “I told you so,” I went shopping for a(nother) new doctor and a new treatment plan. I wasn’t comfortable with injections again and I was a little apprehensive about the pills (they haven’t been around as long as the injectables have), so my new (and current) doctor suggested Gilenya, the pill that’s been around the longest (I believe). I was a little nervous about this one, as it involves ongoing organ function testing and you need to be monitored for a few hours after your first dose, as it can slow down your heart rate…but I felt like I was finally in good hands and I was excited to find a plan that worked for me.
Macular edema is a side effect of Gilenya, so I had to first get an Optical Coherence Tomography (OCT) scan. In the end, I was not a viable candidate for this drug because I already had pre-existing macular edema. *wi-five!*
This is a twice daily pill, relatively new, that many RRMS patients seem to do really well on. The biggest complaints that people have with it are gastro-intestinal issues. I did experience some of that–bloating so painful, sometimes I couldn’t stand up straight. What made me stop taking Tecfidera was the welts. I was covered from ears to ankles in large, itchy, painful welts.
Click on individual photos below to enlarge (I assure you the welts were just as bad on my legs, but frankly, it hurt too much to shave and I’m just not ready for the internet to see how out of control that got :P):
The specialty pharmacy and the drug company assured me it was unrelated to the medication and probably something silly like my laundry detergent. I stopped taking Tecfidera until the welts went away (which took two to three weeks) and then started taking it again. The welts returned almost immediately.
I recently saw a television commercial for Tecfidera and got a little chuckle from it. Check out the warning that appears at the bottom of the screen at the 0:28 timestamp.
7. Low Dose Naltrexone: The Sequel
At this point, my doctor thought maybe the side effects of all the medications I had tried were outweighing the long-term benefits of the drugs, so based on my stable examination results, he said I could lay off the meds for awhile. I asked to try LDN again, but this time from a different compounding pharmacy. As I suspected, the pills I got from the other pharmacy were just a bad batch–everything was fine the second time around.
This past summer, I started Rebif–a subcutaneous injection three times a week. It’s very similar to Avonex, but I was more prepared for it this time around.
There are eight viable injection sites to rotate through: arms, thighs, buttocks, and either side of the belly. I’m down to six options, after hitting a nerve (twice) while injecting into my arms. This has made remembering my rotation a bit easier, however:
Mondays are leg days…in order to get a “leg up” on the week.
Wednesdays are belly days…because that’s one of the days that I belly dance.
Fridays are butt days…because it’s the “end” of the week.
It’s not ideal. I don’t like giving myself shots or having a 15-20 minute conversation with a pharmacist every month when it’s time for a refill. I still have to ship and receive Sharps containers. I still have to remember where I last injected and I certainly could do without the bruising–especially being a belly dancer. I’m not crazy about having to pre-medicate so often and still sometimes feel like I have the flu three times a week. I have to have blood drawn periodically to monitor liver function and I cannot remember the last time I was able to enjoy a glass of zinfandel.
With that all being said, however, I’m content. I’m thankful that I seem to have found a treatment that isn’t causing too many problems or discomfort. I had an issue with some bad depression the first time I got up to a full dose and so my dosage was lowered for a few months and then, just recently, brought back up. I was able to recognize and know that the depression was a result of the Interferon and I was able to nip it in the bud right away.
So! That’s where I’m at! I apologize again for the length and superfluous information here, but hopefully many of your questions about the treatment plans I’ve tried have been answered. 🙂
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17 thoughts on “Gotta Make Cupcakes: A Tour Through MS Treatments I’ve Tried”
Cat, another great blog post…more information for us on the medicines available to treat MS, the side effects they cause and the need for research. In fact, speaking of research, this blog is also a good reminder to help in finding workable answers and solutions for MS patients through continuing research. If you are reading this blog and haven’t yet had a chance to donate to Cat’s “Bruised Apple” Walk MS 2016 team, please consider doing so. Cat, stay strong and brave…you are making a difference for so many people.
Cat, thank you for continuing to enlighten us on living with and understanding MS. Your journey has been filled with many ups and downs. You have handled this roller coaster ride with grace, humor, and courage. You are an amazing woman.
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I found your blog today and love it! I, too, took Tecfidera but unfortunately I drank the drug company’s kool aid for 18 long months of GI upset and the “mild flushing”. Mine went away if I took 50 mg of Benadryl every 4 hours around the clock! Perfectly normal, they told me. I stopped it and within 2 weeks I was a new woman.
Oh, and unfortunately, I was diagnosed with late stage Lyme!
It is very courageous to write about your experience in details like this. I have been diagnose with MS in 2005 and I am still in denial sometime. You should talk to your Doctor about Copaxone. That was the first injectable I was prescribe with and I did very good on it for a while. It is once daily and had practically no side effect. I think you will do very well on it. Good luck!
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Just read your more recent post about having surgery and the new heavy-duty/scary drug choices that are left as options for you. I was curious why copaxone was skipped over as an option early on. I assumed the interferons and copaxone/glitoba generic were the 2 “starter” drugs with the lesser of the scary potential side effects. Was there a reason you went from interferon right into the pills and didn’t try copaxone? Thanks for sharing your experience.
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From what I remember, I think it was a matter of not being crazy about daily injections and the strong potential for the lumps and bumps it can leave behind. Have you used Copaxone?
Okay, that’s completely valid. Yes, currently on the 3x weekly copaxone (instead of daily) almost one year and it has been a rollercoaster. I was warned of it, but lately it’s calmed down. From fainting after my first dose (b/c of needle phobia), then needing to take xanax before every shot, to today (no xanax, no tears), there has been loads of growth on the emotional part. Physically, I had extreme reactions the first few months (softball size raised welts), but now avoid legs and arms where there is less fat. Not gonna lie, it was freaking awful for a while there. But I was also coping with a new life altering diagnosis. And the risk factors of the other drugs outweighed my not wonderful experience. I think about my options constantly. As long as my doc continues to see positive results in MRIs, I think I will continue with it, despite all the stuff above.
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Does Copaxone use autoinjectors? Or strictly syringes?
After reading your last comment, I definitely don’t think it would have been a good option for me. I have super slender, spidery limbs where I do not carry much fat at all. In fact, I had to stop using my arms for injection sites because I kept hitting nerves.
Cat, Yes to autoinjectors. I’ve been told by a peer advocate that if you can swing doing syringes, you can control how quickly the medicine is given, which may alleviate discomfort. I’m doing this solo and wouldn’t be able to self inject that way. I had to stop with the thighs and arms because I didn’t have enough fat either. What a process of elimination, right? Thanks for sharing your story here. The one thing I feel lacking in my ms universe is a community of peers to share with. In my experience, official forums are focused on negativity and comparing horror stories and luncheons hosted by drug companies are filled with a majority of people 30+ years my senior.
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IOaB was created to make the internet a little less of a scary place for EXACTLY that reason. Welcome!
🙂 Thank you!
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Hi thanks foor posting this