At the risk of jinxing it, I am going to suggest that I am out of the woods in regards to the side effects that plague many tecfidera takers when they first begin treatment. Almost two weeks into it, I have not suffered a single side effect. In fact, I have felt really good these last two weeks on the drug.
Repeating a few factors that may have contributed to the success:
I took a full adult dose aspirin (not a baby one) half an hour before every dose. I dropped this after a week, with no negative effect.
A daily probiotic. I began taking Culturelle five days prior to beginning the tecfidera. I have a slew of coast to coast and overseas flights coming up for work so I will stay on this for at least another month to play it safe.
I’ve taken every dose on a full stomach. I eat a lot of proteins and fats anyway so I didn’t modify my diet for the tecfidera.
Popping a pill at the end of my breakfasts and dinners is SO much easier and more convenient than giving myself a shot. I really hope that it is as effective at slowing down my MS progression. Time will tell.
I am a lucky guy in many respects. So far at least, it appears that my luck extends to being able to tolerate Tecfidera well.
Day 4 of taking the pill and I have yet to have a side effect at all. I don’t want to jinx it, but so far, so good.
The next hurdle will come in three days when I double up the dosage from the starter pills to the full dose. I know that some people get side effects at that point. But I have to believe that each day that I go without issues, the probability of developing them decreases.
Again, my strategy for no side effects was as follows:
Start taking a daily probiotic a few days before starting the Tecfidera.
Take a full adult aspirin half an hour before my dose.
Take the dose on a full stomach.
I actually had a minor case of queasiness with my first dose of the probiotic, but that could have been coincidence. It never re-occured. I skipped the aspirin last night with no negative effect. I took one this morning but will probably skip them going forward, now that I am past the first few days.
The next update will come after I’ve dialed up to the full dose. Good luck to any following me down the tec path!
My starter pack which includes the first month’s dose of tecfidera arrived yesterday morning while I was at work.
During the day, a nurse from the mail order specialty pharmacy called me to ask how it was going on the medication and to read me their educational material. When I explained that it was supposed to arrive today she asked me when I would be taking my first dose. I replied that evening. She advised me to wait to take it in the morning.
When I asked her what difference it makes since I will be taking doses every twelve hours? she replied to take the first dose in the morning so that I could get two doses in the same day. I asked how my body knows between which two doses the calendar page flips? She scrambled to quickly read through her prescription sheet for the drug, focusing again on the “taken twice daily” line. Sigh…
I am under a time crunch to get going on this drug. I’ve got a short window of time between business trips to see if I can get past any of the side effects that patients experience when they first start tecfidera. When I only have a week until I have to get on a plane again, I am not going to waste a day of it waiting based on faulty logic.
Following my side effect mitigation plan from my last post, I have been taking a daily probiotic for five days now. Last night when I got home, I took a full adult dose of aspirin as I started dinner. Recently, my wife and I have been eating much more healthy (the subject of a future post), but for this week I am gorging on fatty foods to limit the chance of the side effects. I ate three slices of a sausage pizza.
Then I took my pill. We sat down on the sofa and loaded up a movie as we watched to see what happens to me. Would I turn into a bright red lobster? Or run into the bathroom repeatedly vomiting?
A twitter follower stated that taking chocolates helped her, so while we were waiting, we broke out a box and sampled a few. And then….
Nothing happened.
It’s just the first dose so I don’t want to jinx it, but so far the plan of probiotic, full strength aspirin and a stomach full of fatty foods seems to be working. I will give periodic updates as to how it is going over the first month or so on the drug but for now, I am smiling (and keeping my fingers crossed!).
The specialty pharmacy that my insurance company uses called to let me now that they will be overnighting my first dosage of Tecfidera for delivery on Tuesday. Tecfidera is known for initially causing flushing and abdominal distress in patients that usually gets better over time. The key is how to get through that first month on the drug. My personal situation is further complicated because my MS is a secret from my workplace, and I have a pretty hectic travel schedule with my job. Bad flushing, nausea and diarrhea could be a real problem.
If I get the pills on Tuesday, I will have a week to try them before I have to hop on an airplane next. Based on the recommendations from my doc and the hospital’s pharmacist who works with a lot of patients on tecfidera, the following is my plan:
Take an aspirin a half hour prior to the pill. This helps with the flushing. Many on the internet take a baby aspirin. My doctor recommended a full adult dose. I will stick with this for at least the first week or so.
Eat a full meal with fats and proteins just prior to popping the pill. This slows down the absorption of the medicine quite a bit. I will stick with this indefinitely.
Take a probiotic. This is a tip that you don’t hear often. The hospital’s pharmacist insisted that people who take a probiotic while starting on tecfidera, don’t have any of the stomach issues. The probiotic is a once a day pill that supplements the good bacteria living in your gut. I bought an 80 pack of Culturelle which will take me through the first two months on the tecfidera. Hopefully by then my body has adjusted to it. I checked with my doc who said that this is fine.
Be a guy. My doc said that in general, her male patients seemed to have fewer side effects. Maybe this is because it is the same dosage but being absorbed by a larger person?
I will write new posts next week as I start the medication to let readers know how the plan is working.
I’m exaggerating, of course. But maybe only a little.
Having been diagnosed with multiple sclerosis, my first disease modifying drug that my doctor chose was Rebif. From my recent MRI, it seems to have been working well. Unfortunately, I had an allergic reaction that required me to drop it. On Friday, I met with my MS neurologist to discuss what we would try next. My doctor gave me two choices, Copaxone or Tecfidera.
Copaxone is the most prescribed medication for MS. Until a few days ago, it was a daily sub-cuteaneous injection. They were just given approval to offer it as a three time a week injection, similar to Rebif. Copaxone has been around for a while and has a well known risk profile.
Tecfidera is the new kid on the block, being just approved for MS in the USA in March. A twice a day pill, it works in a different manner than the popular interferon drugs and has had impressive results in studies. For side effects, many of the users experience flushing and abdominal issues including nausea, abdominal discomfort, vomiting and diarrhea. The good news is that for most people, these effects occur at the beginning of taking the drug and decrease or disappear over time. The percentage of people suffering these side effects drops off dramatically going into the second month of use.
So if all else were equal, would I rather have nausea and diarrhea for a month and then have the convenience of just popping a pill twice a day, or not suffer the abdominal issues but be stuck stabbing myself with needles, possible forever?
Out of curiosity I asked that question of my mother, father and wife. We were aligned by gender. My mother and wife would opt for the daily injections to not have to suffer the abdominal distress. My father and I were of the opinion that we could tolerate anything for a month and that would be preferable if it meant not having to give ourselves shots on an ongoing basis.
I chose Tecfidera. Actually, not because of the pill versus shot question. Rather because my wife (highly educated in this topic) and I both felt that we liked the science behind how the drug works, and the efficacy, better. It seems to offer an attractive results vs. risks ratio.
With any luck, I will be part of the half of patients that do not suffer the beginning side effects. If I’m not that lucky, I will keep an old Rebif syringe on the counter as motivation to stick with it through the adjustment period.
My first MRI was one year ago. At the time, I had virtually no symptoms. To my shock and surprise, the scan showed numerous lesions on both my brain and spinal cord. I was told by my neurologist at the time that it is not unheard of for a person to have a mismatch between their MRI and their symptoms. Some people show very little problems on their MRIs, yet suffer significant symptoms. I was the opposite. Completely normal except for an occasional tingle in my leg, but with a quite ugly MRI scan.
Fast forward a year later and I went in to have my second set of MRIs. During this time, my symptoms, while still mild, have progressed. The tingle went away but has been replaced with balance and coordination problems. It now requires a fair amount of concentration to walk without showing a slight limp or wobble. Heel to toe walking has become a challenge. I also have some spots on my foot that have a reduced sense of feeling.
Based on this, I went to my MS Dr’s appointment with very low expectations. During the year I had been on Rebif for three months but had dropped it a month prior to my MRI due to an allergic reaction. Prior to that I was not taking any disease modifying drugs at all.
I had accepted the fact that my MRI would show increased activity and lesions. If it was bad when I had no symptoms, surely it would be worse now that I was suffering some of the effects of the disease.
But that’s not what happened. My MRI actually looked better than the year before! The scan of my spinal cord in particular looked better. Maybe it was the three months plus residual effect of the Rebif. Maybe it was just the path that the disease is taking for me. It doesn’t matter what caused it. I was incredibly elated and relieved.
My appointment was Friday afternoon. It made for a wonderful weekend.
Like all of my posts, the following is my layman’s understanding of a drug and it’s issues. My understanding may not be accurate and please don’t rely on it for medical advice.
Tysabri is one of the more effective disease modifying drugs used to treat multiple sclerosis. It is a once a month transfusion. That would suit me well given my work travel schedule. I would gladly waste an afternoon once a month so as not to have to bother with pills or shots.
But there is a catch. If you have been exposed to a virus called John Cunningham virus, or JCV for short, Tysabri increases the risk of developing progressive multifocal leukoencephalopathy (PML). PML has no cure and will likely kill you.
Now keep in mind that even if you test positive for JCV, the odds are small that you will get PML on Tysabri, but they do exist. Even a small percentage chance doesn’t quite seem like a good risk reward ratio if the loser of the trade dies.
If you test negative for JCV and go on Tysabri, you will need to get regular tests to make sure that you didn’t pick up JCV along the way. If you did test positive, you could have had it up to a month since your last test and I understand that Tysabri can hang around in your system for a couple of months after discontinuation. That gives you roughly a three month window where you need to pray that you don’t get PML. Not likely, but scary nonetheless.
While scary, Tysabri is one of the more effective treatments. Scan the blogs and twitter and you will find countless people that have had great results with it. That makes it a tough choice.
As readers may know, I was on Rebif but developed an allergic reaction to it. Yesterday I met my MS doctor to discuss our next treatment. We reviewed my recent blood test and found that I tested positive for JCV.
Mixed feelings. Disappointment because it means that one of the more effective treatments is no longer an option for me. But at the same time, relief. Taking Tysabri off the table as an option means that I don’t need to bother with the anxiety ridden debate of whether the effectiveness is worth the risks of the drug.