The Added Risk of Yet Another MS Treatment

By Matt Allen G

3 min read

Choosing my first DMT

Many people with Multiple Sclerosis (MS) are told about the importance of starting a disease-modifying therapy (DMT) right away upon diagnosis. I remember being given a stack of literature about several therapies the day I was diagnosed which, in my opinion, was a really good thing. I have to admit, it was a little overwhelming considering nothing was explained to me by my (at the time) neurologist. I was just told that I have a chronic autoimmune disease, as in, there is no cure! How at 20 years old and trying to figure out how to deal with this new reality am I supposed to read through all these brochures for different needles and actually be able to make an informed decision on what to start injecting into my body when I never have even taken prescription pills before? I tried to read through but at the time I didn’t really know what any of it meant nor did I really understand what the risks or potential side effects were. I was pretty much just playing eeny-meany-miny-moe!

I am much more informed now

8 years later I can say I definitely know a little more about MS, healthcare, and even the treatment of different kinds of diseases than I knew before I was diagnosed. I have also been on a lot of different therapies since then Copaxone, Rebif, Tysabri, Aubagio, Lemtrada, and Zinbryta) and so I have developed a much better understanding of the associated risks that these therapies come with. You see, I hated the feeling of not understanding how these drugs worked and what they could do to me so I spent a lot of time reading about them and asking all my doctors (as well as any other medical professionals I met) questions. I wanted to be as informed as I possible so I could make smart treatment decisions.

Losing my confidence

After I started Tysabri, I began to feel more comfortable with the risks brought about by MS therapies but now I am in a weird place when it comes to treating my MS. I have done quite a few MS therapies (especially after Tysabri) and I understand the risks that each one of them came with individually (mainly the therapies I did in the pretty short period of time since I was on Tysabri) and for the most part the potential benefits always seemed to outweigh the potential side effects . Because my MS was always so aggressive it became really easy to just “try the next thing” because I just wanted it all to stop but now I seem to have lost that confidence. I worry now because what if all the risk factors that these treatments brought to the table have just been adding up? At what point will they become less of a risk and more of a probability? Does it even work that way? I don’t know, but I feel like I should be on something…

Making the right move

After Lemtrada, my bloodwork (tested every 4 weeks) looks good and my MRIs don’t really show any active inflammation. Despite how well I look “on paper” I still don’t feel great. In fact, for the last month or two, I have been having a bit of a relapse and my symptoms have really been flaring up so I talked to my neurologist about Ocrevus as I was hearing about more and more people who had started this treatment after not seeing the results they were hoping to see with Lemtrada.

Second thoughts

My neurologist felt it would be OK for me to start Ocrevus, so he started all the paperwork and gave me a few labs to get done to make sure I am ok to start this therapy, but now I am having second thoughts. I’m having second thoughts because what if this isn’t the right move? What if now after all the MS therapies I have been on and the long-term risks associated with them have been stacking up and are now starting to get too high? What if they are all about to come crashing down like a poorly played game of Jenga? And also, are there different risks or different odds of me developing something terrible like cancer, a second autoimmune disease, or PML because I have mixed some of these therapies together? I have a lot of new questions about this treatment topic that I haven’t yet even started to try to address because once again I have just been so overwhelmed by all these unanswered questions as well as how crappy I have felt for the last 2 years or so. All of this has resulted in me finding it really difficult to sit down and do all the research I need to do to feel informed and fully confident in my decision-making ability.

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meljalden Member
I need a ms doctor, so far I get told it's all in my head. After 10 yrs., I need some supportive care, called the ins. Co, but they have no doctor that's a specialist at all that take my insurance. My hearing,eyesight,ability to swallow,tremors in each hand, days I can't think at all, memory loss. Pain flares that last about a week in my brain and back of neck. Can't keep my tongue still,sleep deprivation,roof of mouth and tongue swell. Loss of urine and bowel control with extreme muscle cramps and unrelenting pain...and no doctor that will listen after waiting a year for the appointment. Pls reply
1. gina1 Member
 Hi,I don't have health insurance anymore, but I called 2 great MS specialist and both of them accepted me charging a very small cost for appointment. Sometimes MS doctors also get help from pharmaceutical companies and you should call MS Society to help with appointment with Specialist as well. All works.
2. Matt Allen G Moderator & Contributor
 Maybe (if you can) save up some cash and see a specialist who is out of network for some one-time advice on a direction to pursue? Might be worth the one-time investment?
gina1 Member
Hi, I would like to tell you to do more research because many more new different approach of treatment are on the way now, not only immune suppression. About the medications you mentioned, what I read was Lemtrada does not work immediately, this is why you did not fell well. It works in long period of time like 2years. Because of that I refused to take before, but I have friend taking with good results. The way Lemtrada works is completely different than Ocrevus, I don't think you would have stakes of cumulative suppression. You should also take many other natural supplements to help your body keep in shape in Holistic Medicine, in physiological replacement. I have accelerated MS and never give up of research. There are too many news for you discover, all good news, nowadays all Biotechnology are showing great news. Follow Ectrim in Europe and Actrim in here. A lots to learn also. I found my way now and its making results.
1. Matt Allen G Moderator & Contributor
 I would say I am well on top of research and you're right, the effects of Lemtrada DO take a while to set in and results are usually apparent in the post 2-5 year period but while my MRIs have shown no activity I don't FEEL any different. I still (OFTEN) have flare-ups lasting at least a week, same as before... my neurologist said that I could still have flare-ups even if my MRIs show nothing because the inflammation COULD be too subtle to pick up? And yeah, Ocrevus works on a different set of immune cells but what I worry about is how I now have all the risk factors that came with Lemtrada (and everything I have recently been on) so if I do another treatment I will also have the risk factors of THAT medication ON TOP OF the Lemtrada risks (which according to the clinical trials tend to start presenting around where I am in my Lemtrada journey). However, at this point I think the potential benefits outweigh the potential risks but I am also looking into some other "alternative" treatment options to add on top of conventional medicine because I just want to FEEL healthy, you know?
jhmollsen Member
Hi Matt! I have some questions about nystagmus. Do you think you can email me? Hbbop19@hotmail.com