Managing a Multiple Sclerosis Relapse

MS Relapse

What IS Happening With My MS?

So you are going along holding steady with your Multiple Sclerosis having what I call “Good Days” then wham, all of the sudden without warning you can barely get out of bed. Your first thought is what happened? You experience the next several days experiencing a lot of MS symptoms which interfere with your daily routine. Anxiety and even stress set up and leave you wondering how long will this last, or is this a flare-up/relapse, has my medication stopped working, do I need to call my Neurologist? Questions flood your mind and you keep going over what you might have done to cause this, but no real answers come to mind. You are NOT alone.

All of us suffering from this devastating disease goes through this more often than not and what I have found over all the years of having it, is you probably did nothing to cause any of this.  Changes in our condition can come from something as simple as weather changes or not sleeping very well. Increased stress, travel, or even something as simple as a change of routine can also be responsible. This doesn’t necessarily mean your medication is no longer working, but if you are going through an extended period of “down time” calling your physician to let him know may be a smart idea. Often steroids are prescribed to assist us through this. Some can take steroids by mouth if the symptoms aren’t too severe, but IV Solumderol is recommended for the more prolonged changes which symptoms are more pronounced. There is also a drug call Acthar, which is not a steroid but a hormone called ACTH, which stands for adrenocorticotropin, which works to decrease inflammation and speed recovery. It is usually given as a shot underneath the skin but can also be given in the muscle over a 5 day period. Unfortunately the cost of using Acthar verses the IV or pill form steroid is much higher and you can experience the same sort of side effects. It is my understanding that there is financial help available to reduce the cost or even obtain it at very little charge by contacting the company that makes it. This can be found on the web by typing in Acthar into your search engine; your doctor’s office can also assist you with your financial application. I have used this once over a 5 day period and did respond favorable to it.

MS Relapse If you are not having a lot of experiences with relapses, you are certainly one of the lucky ones. For many others like myself, it seems to be an ongoing problem and find that this is something to discuss with your doctor. It could mean that your medication is not working like it should be and a change to a different drug could be warranted. It is unusual not to know when I am in a flare-up/relapse, but it can sneak up on you so slowly that you don’t even realize that functions that you have lost. Over the years this has happened to me only a couple of times and was truly amazed when I found that I could no longer curl my toes or that my grip wasn’t as strong as it once was but overall I am pretty aware when balance, coordination, or even cognitive difficulties have risen their nasty little heads. If I am in between visits, I carefully log when symptoms are noticed and continue to do this daily until things have improved. It is also important to keep track of when special, PRN, medications are given, such as steroids, are being taken to keep track of how you are doing, side effects, and any improvement being made. With memory being a problem for most of us, this type of information is valuable when speaking with your physician to discuss other potential treatment options or if additional tests are needed.

For us “old timers” we have learned about the abnormal’s while living with MS, but for those of you who are new to the disease, learning to cope with the relapses can be difficult and disconcerting. Just know that it is very common to go through these things and use whatever tools out there to help you get through it.

 

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.
  • mbrsinc

    Sounds like an ad for Obamacare which is reportedly not covering the cost of many accepted MS drugs and has few if any MS specialists in their network. We learned decades ago that price controls don’t work. Perhaps the answer is in getting the government out of the way thereby allowing easier, less risky access to pharmaceutical competitors to bring important innovative drugs to market unencumbered by the highly political FDA. You need look no further than the long, tortured history of alemtuzumab, a drug that has been used to successfully treat MS for 20 years and you have had access to for 7 years while several companies have made huge investments to satisfy government regulators. My God, alemtuzumab is still not approved in the US! You started a petition to try to get the FDA out of the way. The typical drug costs over $1 billion to get to market and the marketplace for MS is small. I am very grateful for the risk takers and greatly fear that more government intrusion will only serve to deter them from innovating further. You made some good observations regarding access to insurance (could have been easily solved for relatively little money), the high costs of drugs, etc.; but let’s don’t kid ourselves into thinking that this government (think of IRS, FDA, EPA) can help except by getting out of the way and let’s see the free enterprise system work! – mbrsinc

    • Thanks for the comment. Thanks for reading. 🙂