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So this a page for my book and for: Daily News for Neuros, Nurses & Savvy MSers: 208,152 Viewers, 8,368 Stories & Studies Stories for September 6 are • VIDEO: "I tried Medical Marijuana as a last resort, and it's been an absolute blessing for me" • VIDEO: Squiggy Speaks Out on Living With MS • A HEART transplant patient who cares for his ill wife says doctors saved two lives the day they operated on him • Fumaric Acid: an effective drug against psoriasis and multiple sclerosis? • STUDY: Validity of Maximal Exercise Testing in People With Multiple Sclerosis and Low to Moderate Levels of Disability
Contributed by Yvonne Decelis
This is from a book I am writing (titled: It's Not as Bad as it Sounds (my life with MS & Fibro)): Remember as you read this that I am a patient, not a doctor. Also remember that MS is very different from person to person. I know I may sound like a “broken record” but so many people lump us all in the same category and that is NOT a good thing. I am going to go over some (but not all) of the medications currently available for people with Multiple Sclerosis and will go into a little more detail about the medications I’ve taken myself. I am also leaving out all of the supplements I take (like fish oil tablets, magnesium, vitamins B and D, etc.) since they are all over the counter (OTC). I am not leaving these OTC meds out because they are not strong (a common misconception) by the way. Please do not ever make the assumption that, just because you can get something without a doctor’s prescription, a medication (or food or drink) won’t be harmful. I know people who have given themselves Liver problems by taking too much Tylenol. Finding out about having MS was a roller coaster ride. I found out I had it and I was very upset. Then I found out there was a medication available and the sadness started to dissipate. Then I found out the only thing available was an injectable medication (known to cause “flu like symptoms”) that could later lead to serious liver damage (some who have taken these meds have experience renal failure – also not good at all). It’s bad enough not knowing how you are going to feel in a day but finding out there were no oral “disease modifying drugs” (DMD) medications and that the only medications that are available are injectables with all sorts of known side effects certainly doesn’t help. NOTE: Tecfidera and Gilenya are the (as of now) newest oral medications to be approved for relapsing remitting MS. I will be switching to Tecfidera (AKA BG12) in a few weeks myself. My first medication was Betaseron. I believe I only was able to take this for a little under six months. It didn’t help me, and the side effects made me feel a LOT worse. The first time I took it I woke up with horrible chills (this was on a day that was over one hundred degrees and humid in my area. It was like having an internal air conditioner that I couldn’t turn down or off.) Betaseron is a subcutaneous injection (meaning under the skin as opposed to muscular or IV). I believe it was either an every-other-day or three times a week injection. I had a bad attack while on this medication and I eventually went off of it because, not only did it make me feel horrible, it also appeared to not be effective (that does not mean the same would be true for everyone, however). The next medication I went on to was Avonex. Avonex is a once a week intra-muscular injection. I was horrified the first time I saw how big the needle was. Like the Betaseron, the Avonex also gave me horrible side effects that would make me sick for three to four days but unlike the Betaseron the Avonex appeared to be helpful. My reason for thinking the Avonex helped is that I haven’t had an attack since 2000 (and I’m “knocking on wood” that I’m not jinxing myself by writing this) and because of few of the lesions that appeared on my MRIs diminished a bit since having been on it. About three years ago I was told about a way to make the side effects far less potent (again – this works for me and several others but I can’t promise that it will work for you). I spoke to a nurse in (approximately) early March of 2010 and, when I complained of how lousy the Avonex made me feel (I've been using Avonex since 1996 and it always gave me flu like symptoms for 2 to 3 days), she recommended I try eating fresh (i.e., unprocessed, uncanned, unheated) pineapple before (about an hour to sixty minutes BEFORE) I inject because it has an enzyme in it (Bromelain) that helps lessen the side effects significantly. FYI: Bromelain is a natural anti- inflammatory. She also told me the pineapple had to be fresh (but I did have one MS friend tell me she used canned and felt it still helped. Then again, another one of my “MSer” friends told me the exact opposite and swore to me she would only use fresh pineapple from that point on.) I find that the more pineapple I eat, the more it helps. Unfortunately I am not wild about pineapple (aside from how well it works with making the side effects tolerable. Love it for that but do not like the taste.) My Neurologist also recently told me she has been telling her patients about this and that she's been getting good feedback back (for ALL Interferons, NOT just for Avonex). She also emphasized drinking LOTS of water the day of and after the shot (not a shocker to me since the “sickness” I feel after the shot feels a lot like a really bad hangover). NOTE: I have been making smoothies instead of eating the pineapple all by itself. The smoothies work REALLY well (I'm glad too – I got very tired of Pineapple). The only “bad” thing about this is that my body appears to be “used to” the smoothies. I recently tried to just eat pineapple and it didn’t help at all so I now have to make myself a smoothie every time I do my shot. No matter how good the smoothie may sound, it really is not. When you have to have something every week it winds up tasting like medicine. Since I have been asked for a smoothie recipe so many times I will include what I use in mine (and I want to note that, for some reason unbeknownst to me, banana makes the smoothie far less effective. I don’t know why though.) Quick(ish) and easy Pineapple smoothie recipe: one whole (or half) pineapple) one yogurt (I used blueberry flavor in mine) coconut water Optional: Blueberries or Strawberries Optional: approximately 4oz milk/cream/coffee-mate (coconut cream is pretty good in this too) NOTE: I put in cream or coffee-mate to help tackle the heartburn the citric acid in the pineapple gives me. Put contents into blender and drink prior to injecting (gradually finish as much as possible). Now all of that said, I wanted to mention a few other medications. I did take a two-month “break” from Avonex back in 2000 to try out another medication called Rebif which is also a subcutaneous injection. The Rebif seems to work very well for many people but it didn’t work well for me at all and after two months I went back to Avonex. My Neurologist asked me if I had any interest in switching to a new oral medication called Gilenya but after reading about the side effects (i.e., reduced blood pressure, making the user more prone to infection, etc.) I decided to stay with Avonex. There was another medication being studied called BG12 (from Biogen, the same company that makes Avonex) that sounded very promising. This is another pill and, while it would be a brand new medication for MS patients, it has been around for years in the UK (and has been used for years to treat psoriasis.) There are other oral medications in the works but BG12 (AKA Tecfidera) is the one I’m most interested in. I know there is another one with a similar projected release date but, when I read that it has a 15% likelihood to cause hair loss, I decided against it (one side effect from the Avonex that I forgot to mention is how thin my hair has become. I am 90% certain the hair thinning is from the Avonex. I don’t know for sure but I hope and pray to someday get my “normal” hair back even though I realize it may be too late for that.) I should also mention that most of the medications I have just written about are for people with relapsing remitting Multiple Sclerosis. I don’t know what is available for other forms of the disease (including but not limited to Primary Progressive, Secondary-Progressive, Progressive-Relapsing, etc.) but I hope and pray medications are in the works for MS patients in these categories as well. One thing that I take is not considered to be “real medicine” in this country. It is called Low Dose Naltrexone (also known as LDN). It really boggles my mind that it hasn’t been approved as something that can be prescribed by doctors here. I have been on it since October of 2010 and it has helped me tremendously (and also appears to have a cumulative effect). I am going to explain my perception of what LDN is from what I’ve heard and what I’ve felt ever since I started taking it in October of 2010. Naltrexone is a substance that is (was?) used in the UK to help people kick addictions to narcotics and alcohol. A low dose version of the drug has been effective for many people with a number of immunological disorders. The LDN turns down the brain’s opioid receptors and, as a result, turns up endorphin production. It is thought by many that LDN can help with cognitive function and fatigue. I haven’t found the latter to be true (yet) but I agree that my cognitive functioning has improved.
Contributed by Yvonne Decelis