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  • anywayceleste
     
     I was diagnosed with MS in 2008 and have since then been on and off a few different medications, with several unintentional periods of being on nothing at all. Right now I have been on Tecfidera, its been a little over a month. The medicine I used before this was copaxone for around two years. I liked it well enough save for two pretty serious flair ups both resulting in ER visits. There was about a year between Copaxone and Tecfidera where I was on nothing (lack of insurance, having no money, trouble navigating the system in a new city). 

    Being on no medication for MS is very stressful. The feeling that I am doing irreversable damage was always lurking, the fear that I could wake up one morning and find myself permanently sick. But, I am one of the lucky ones, my illness, while keeping me permanently opperating below 100%, has been for the most part invisible The symptoms can more often than not be pushed into the background of my life ("Oh, but you look so well!"). Before being put on Tecfidera just over a month ago that whole year or so that I was on no medication, I had no serious symptoms. No flare ups or debilitating fatigue, no nothing for the whole year! There was a week in the middle where I experienced fatigue but was able to rest it away and in no time I was back on my feet. In fact, that year I felt better than I had for years and years. But still I knew I needed to not pretend I wasn't sick. I needed to stay out of denial and get on medication. So i did my research and me and my neuro decided on Tecfidera. So happy to take medication that doesn't need to be injected!

    As I am writing this I am on my third day of being trapped in the house. I saw it slowly kreep up like a fraight train, but there was nothing I could do. And now I am unable to muster up the energy to do even the simplest tasks. The light outside makes me dizzy. My stomach hurts. I am so so tired there isn't enough sleep to fix it even if I slept for 72 hours straight. My body hurts. When i wake up I feel the pain in my legs, and as I lay in bed and wonder if today is the day my legs will stop supporting me. My hands hurt. My skin itches. Splitting headaches. Ugh and the depression.

    This has become a sort of patern for me. On meds I am a sick person - off meds I am not. Am I alone in this? Why does this happen to me? I try to come to terms with being someone with MS by taking care of myself ...and it triggers me. I have gone for years on meds opperating at 50-70 painful percentages. And then I have gone for years on no meds opperating like an average person without a chronic illness. I am not going to go off of meds again if I can help it because of the long term effects, but on the other hand I have this terrible fear the the medications are desroying the possibility of enjoying a full and happy life for the time that I do have here.


  • maria1
    Hey anyway...you have just begun on this journey. Your body and brain have to get used to the new alien medication and go through its temper tantrums before you settle down. If you are on other medications they too will fight with you and the techfiedera and they also have side effects.

    Did you ever hear the expression 'beauty must suffer'? My older sister used to pluck my eyebrows and tease my hair and when i would complain that is what she would say. Never asked her why?

  • nursep
    Yes sir! I hear you. I did 2 injectables and was extrememely symptomatic and felt compromised in general, while on them and the longer I stayed on them the worse it got. I knew I would not be able to continue working full time nor would I ever feel somewhat healthy while on them. So, after several months of deliberating, the symptoms became so severe and alarming, I took a medication vacation. Felt much much better while on the vacation. Got an MRI, no change. I have been on the Tecfidera for almost 2 months now and I have hand pain as well which has never been one of my symptoms, leg pain, weakness and headaches, which come and go for me but I do not see a correlation for me with the Tecfidera as of yet. It has been oh so hot here and that always makes me feel awful.
    I know several people who share this feeling that off meds: life with MS is really not so bad and yet on meds: life with MS is exceptionally painful and difficult. I am one who has felt that way often!! But since you have not been on Tecfidera long, I'd be sure to tell neuro about your symptoms and give Tecfidera another month or so before you make any final decisions about it.
    Hoping today is a good one for you!