Not All MS Medications are Right For Your Treatment

Not all Pills Are the Same for MS Patients

Important Things to Know and Ask When Changing MS Medications

The most asked question that I see people ask is when their physician wants to change their Multiple Sclerosis medication from one type to another and they want to know how others are doing on that particular medication. I have asked that same question even written about my experience on Lemtrada for others to know how it worked for me.

Since my diagnosis in 2004, there have been several new medications approved by the FDA, changes in some of the older ones, and experimental studies on a couple of others. The one positive thing that I can say is that research is non-stop of treating MS and the outcome from this has had many improved conditions for so many individuals; I am one of these people. Unfortunately for some though, these medications are not working and are waiting for other treatments and medications to be approved and are still holding on to hope that this will happen sooner than later.

When researching these medications, the one thing that was brought to my attention was all of these were for the relapsing form of MS, not one said it was for progressive MS but I understand that all forms of Multiple Sclerosis are relapsing, although some stay in that state. Even Lemtrada, which has now been resubmitted for a second chance of approval, is being stated to treat RRMS. There are pills in place of injections, and some injections have changed from how often you have to take them, to the medications that are given IV.  The other thing that I noticed was the side effects or adverse reactions from each of the medications and there are some pretty serious side effects presented with each one. You don’t want to take Gilenya if you have heart problems, have had a stroke, or even high blood pressure. Tysabri is a big no-no if you have been exposed to the JCV virus, John Cunningham Virus, because it could give you a brain or spinal cord infection that there is no cure.  Avonex can cause severe behavioral health problems and could develop heart problems, Copaxone, Tecfidera, Aubagio, along with the ones mentioned above can cause liver damage, they increase your risk of infection from decreasing your white blood count, and a few can cause diabetes related problems such as neuropathy, or macular edema like optic neuritis, not to mention the regular stuff like nausea, vomiting, diarrhea, headaches, depression, tiredness, rashes, joint pain, etc.  Look, I am a nurse by trade so am very familiar that ALL medications have side effects, but the second most asked question is whether they symptom someone is experience is related to their MS. Most likely it is a result of a symptom from a medication you are taking.

An example of this is when I saw someone ask if others who have MS also suffer from reddened feet that have prickling sensations. That could be a sign of peripheral neuropathy that could be from having a high blood sugar such as diabetes that would secondary from a medication that you are on. Hair thinning is also experienced by many which is also a side effect from one of the medications. We can’t avoid taking medication to help our MS, but when changing from one medication to another become familiar with all the facts about it like, who shouldn’t take it, what allergy signs are associated from taking it, all the side effects, and conditions that could arise from taking it. Not everyone experiences all the side effects and not 100% of the time, some of the effects will go away or lessen over time. Another thing is that not all people will receive the same benefits as others. MS is different in each individual depending on where lesions are located and how many they have so medications will react different according to those issues. Our chemistries on how we accept medication in our systems differ as well so where one person can exhibit very few side effects another will be severely allergic to it. One other thing to acknowledge is that how we do on a particular medication can be determined by other medications and illnesses that we may have.

When your doctor wants to change your medication be prepared to ask important questions such as:

  • How will this new medication differ from the one that I am already on
  • What is the cost of this medication and will my insurance cover it
  • Does the company offer any help with out-of-pocket expenses to reduce your costs
  • What symptoms or adverse reactions does this medication cause
  • What condition can arise from taking it
  • Is there any medications that I cannot take with it
  • Can your doctor provide you with a pamphlet or insert about this medication
  • Is there a different medication that will offer same results with less side effects
  • How is this medication administered and how often do I take it
  • How do I store this medication

When researching a medication, obtain all possible information that you can get from your physician, pharmacist, even checking on the internet. Be sure you give a complete family and personal history on yourself providing your physician with all medications you are on, allergies to good and medication, and a complete list of any symptoms that you are experiencing. If you begin having problems after starting a medication it is important to let your doctor know immediately, especially if you are swelling in the face, tongue, throat, have a rash that appears, or trouble breathing.

Don’t be afraid to ask questions and even say NO if you feel that a medication is just not right for you at the present time. Remember that you and your doctor are a team in treating your MS and that good communication is extremely important to prevent further injury.  I hope your doctor is easily accessible to answer questions once you are home cause this is important, but if he isn’t you may want to think about having a script for your old medication along with a script for your new medication to provide you time to think about whether you want to change medications or not. The one thing that I do want to emphasize though is your outcome from taking a particular medication or treatment may not be like others that you talk to; you could have a better response than others so stay positive and keep vigilant on what your body is saying to you.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.