Hi! I've had ms since march of 2013. I have been taking copaxone three times a week. It used to be every day till it was changed. My doctor says I've become immune to it so she has changed my med to trecfidera. I start this Saturday when my hubby will be home in case something happens.
I also have diabetes and had a heart attack witch left heart failure .
I'm scared of this med for some reason. I have read about the brain infection which can be deadly. I also have read about people getting shingles. My side is in pain 24/7 for four years now. I take pain meds almost daily.does anyone have a opinion about this new med I'm about to take?
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Momjules
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Hi Momjules lm sry l dont have any advice on the tecfidera. But l know others have. I just want to let you know your not alone. Have you told your neuro about your concerns? What did he/she say? They must have felt that it was safe for you? Even with the other things going on? If it's that much of a concern maybe talk about taking something else? Last question lol are all your Dr's aware of all your meds your on? That was the hardest for me, l finally put all my meds in my phone so that l had an up to date list for each dr. Now they are on the same page lol
Jes has good recommendations here. I keep an updated meds list in my wallet, behind my insurance card. I'd probably forget it was on my phone or leave my phone at home. Done that! And because I tend to lose all thought when dealing with stress or with a last minute switch or change in direction (try living with Mr. Spotaneity! 😱), I make sure I have everything done the day before and out in its place so I have better recall when needed. I even lay my clothes out, and a post-it note detailing what time to start what, in order to leave the house on time. 🙄 I'm sorry you've gone through all you have, but am happy your husband has decided to stay home and keep watch/care for you. At stressful times like this, I try to focus on what I DO have and what IS secure in my life. That helps calm me and prevents that spiraling fear from plunging me deeper into that 'what if' pit. Been there myself this week. Trying to focus on my many blessings-my husband, for one. It sounds like you are blessed with a good one too. Keep us updated and let us know how Saturday goes. We care, Momjules.
All my doctors know my meds. I keep a copy in my medical pouch which also has my stent paperwork and medical cards.I appreciate your reply and you have some good ideas I'm going to use
So, Tutu, I had to chuckle when I read about your post it notes, cause I do the same thing! I remember one time I was supposed to be somewhere and thought I had all the time in the world to get ready, when I realized I had to be where I was going in 30 minutes and it was going to take me about 30 minutes to get there! So I started making the post it notes exactly as you do, and they have been a big help. I also have post it notes on a wall in my kitchen with information I might need, like my new grocery list, and maybe one important one on my one cupboard if it is something I want to do for that particular day. I try to be organized, but can't let the stress of being over organized get to me either,r and repeat to myself what my one said, MOM! It's going to be O.K! Sometimes I am hesitant about posting on this site, but am getting better at it because of posts like yours, where I see that there really are others out there that are doing things, feeling things, and dealing with neurologist and medication worries just like me! Thank you, Tutu. : )
Blue51, I appreciate you sharing and letting me know I'm not the only one! I started my 'time countdown' post-its for the VERY reason you stated. Fortunately, I have a strong heart. I have tested it repeatedly when I have underestimated the time it would take me to get somewhere or get ready to go. Everything takes much longer than I think it will. So tell me, do you have a particular place for leaving these notes (aside from your fridge for your shopping list, as you stated)? I do. My husband has learned not to touch them!! Poor guy. He's lovable but shows little emotion. I sometimes think he thinks I've totally lost it. 😉 I MUST have things kept in particular places these days, and I find I get frustrated when they aren't where they are supposed to be. I know he doesn't understand why that is so important to me, but it's one way I can maintain control and alleviate some stress.
Tutu, my post it note place is on a wall in my kitchen right next to my calendar. I have several notes on that wall. One has my family's cell phone numbers and there are others notes there for many different reasons. My grocery list is there too in its own special spot! My most important "daily or weekly" post it note goes on the cupboard where I will see it when I make coffee near my sink. I may also put them on the small table that my note pads, pens, and pencils are kept. I have been doing this for so long now it is just second nature for me to see the notes and check them out. I live alone, so the only time things get more unorganized around here is if my 1 year old grandson comes to visit! : )
My husband recommendedI use the 'note' function on my phone. For some reason I still prefer paper and pen-where I can see and touch it. Out of sight is out of mind in my case. And a 1yo grandson? Lucky you! Yep, only they can get away with shuffling our notes.
I use the notes section on my cell phone for my grocery list and other things I think I may need at other times. Best thing ever! Always leave notes at home but 99% of the time I have my phone with me.
I wish I could get to where I'm able to do as you do, bxrmom.No matter how careful I am, I sometimes leave the house without my notes. But I've forgotten my phone too. Good thing my head's attached...for what it's worth. 😜
Jesmcd2 I know what ya mean. I used to forget things were on my phone until I got used to having things saved on it, though I still forget sometimes. lol
bxrmom but l keep forgetting what lm allergic to. Yikes. I did start doing that, but there is always something else, or they get upset because there are certain meds that l refuse to take, and l put them on my allergy list. Then l have to explain why, blah, blah, blah. lol Its a no win.
Hi Jules, I'm not yet diagnosed so not on any medication. I have just read about this one. It seems that all meds can be a double edged sword, with possible side effects. I think it is up to the well informed individual to decide if the possible benefits outweigh the risks - not the doctor. If you are not feeling happy/confident you could ask what else they can offer ? Do you have to make a decision there and then or could you go home, research any alternatives given and then decide ? x
I was on Tecfidera for a short time. I had very little problems with flushing but it made me very sick in my stomach. I have serious reflux and it was the wrong drug for me. It didn't help with my walking either. What I really liked about being on the med was that cognitively I felt really sharp on it again. I hope it works great for you!
Modules, it's Fancy1959 welcome into this wonderful chat room. I am sorry I did not respond to your post earlier somehow I missed it. I took tecfidera for almost 2 years. Have you had the test for the JC virus? If you are negative for the JC virus the possibility of developing in a brain infection is all but insignificant it is so small. If you tested positive for the JC virus like I had it still is so extremely small that you have very very little to fear. The only side effects that tecfidera normally produce or a flush and effect after you take the medicine. That typically goes away after you've had the medicine for a week sometimes two. Other than that I believe it's a safe medicine but you need to speak to a neurologist and get information on this therapy if it scares you so.
The entire time I was on it I never really had anyone tell me that taking tecfidera put people at a greater risk for shingles. I love the ease of taking the medicine and felt good most of time I was on it. The reason I got off tecfidera was I started to notice a decline in overall function and I went in and had my neurologist test me. Sure enough I had went from RRMS to SPMS. Try to relax and go see your neurologist again to get more information on tecfidera and talk to him about your concerns. I'm hoping your neurologist will be able to put your mind at ease. We're only supposed to weigh if you need it it was very nice to meet you and I look forward to speaking to you in the near future. Remember together we are stronger! I would also like to invite you to become our newest MS WARRIOR. As an MS Warrior we never give in and we never give up. We simply fight on!
Hi. I thank you so much for your reply. Today is Friday the 11 so tomorrow I will start this new pill. My hubby will be home with me. I accept ms. Warrior. We never give up! I will keep everyone informed if my new med and it's effects on me! Thank you again!
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That's what I put on my b/f's med list that he takes to his dr appointments. His dr was pleased with it 
Then l have to explain why, blah, blah, blah. lol Its a no win.
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