Started Tecfidera Wednesday!

It is so nice not to have to do injections! The first 2 days it was warmer here in Michigan (80 degrees) and we didn't have the air on yet so I wasn't sure if it was the rx making me hot or not but last night and today I have been just fine. I make sure to take a low dose aspirin and eat something approx. 30 minutes before I take my pill. I haven't had any flushing or stomach issues so far. Hope this keeps up with the higher dose when I start that next week.

Thanks everyone for responding when I was thinking about switching to Tecfidera, it really helped ease my fears.

Jessie

17 Replies

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  • bxrmom Welcome to the club I have been on it for 5 months and I have improved a great deal. I like the fact when I reorder they ask me if l have any questions for the pharmacist.

    Just make sure when you reorder to have them put on the package to wait on member to come to door ups like to ring once and leave b4 you get to the door here in Chicago.

  • rjoneslaw glad it's working out for you. I have always told the pharmacy that it is ok to leave as we have an enclosed porch and don't have a problem with neighbors. I'm usually home though when it arrives and usually am waiting for the driver to come to the door. But our delivery drivers are good about leaving the packages inside the porch unlike the different mail carriers we have had over the last year.

    Jessie

  • bxrmom Glad to hear things are going well with tecfidera so far, I hope it continues for you. It is my next DMT choice if I need to stop copaxone.

  • lois52 Thanks! So far I'm doing good. Will post more the longer I'm on it.

    Jessie

  • Hi lois52 This is ssdw1958 I have been on Tecfidera for about 2 1/2 years. now i have to let you know i haven't been able to snap my fingers, for along time since my fingers became numb. after I started to take Tecfidera some of my fingers on my right hand wren't as numb as they were before taking Tecifera. I know some people would say so what, I know you won't, but after that I tried to snap my fingers on both hands and guess what I could do it. more with my right than my left.

    I do have to tell you when I first started taking Tecfidera i did get flushed in my checks with some times, up set stomach just eating a piece of bread is a good thing. that stuff only lasted, I say about a month but everyone is different. I do want to let you know about a month ago I was flush on my legs and my face. My husband was home and I asked him what he thought it was and he said it looked like a allergic reaction so I took benadrill (not sure on the selling)

    That did it's job,I did call the phone number for Tecfidar and they did say it could have been from the medicine I thought that was straight because it had been over two years after I had

    started.

    I know this is long but I just wanted to give you some information. one other thing you may need to keep an alarm so you keep on a schedule i have missed the exact time and i called the the same number again and i was told if it was an hour later it would be ok but don't do it to much over that time.

  • ssdw1958 I'm happy that tecfidera has lessened your hand numbness a little. To have even a little less numbness must feel good. For me it's my r foot that is most numb, and burns at times. As greaterexp said, it is very helpful to learn from others how their DMT is working and what real symptoms they are experiencing rather than just reading about possible side effects, so thank you for the info! I hope you have continued success with tecfidera.

  • I've been on Tecfidera for over three years and I still sometimes get flushing. It happens in one of two ways.....sometimes my ears get super hot and my face is hot and splotchy.....sometimes I itch and splotch up. It seems to happen more when I'm stressed about something. Either way, it's gone in 15 minutes or so and is a small price to pay for the only side effect I have. :)

  • bxrmom, I'm thrilled for you! I hope you have wonderful results and no side effects. Thanks for keeping us posted on how you're doing. I know we are all different, but it sure helps to gather information from everyone here.

  • Hi bxrmom so glad you it's working for you! It's like greaterexp it's always good to learn about other DMT's.☺ I read in your profile, you work at a rescue for small breeds? What kinds?

    Jes🌠

  • Jesmcd2 I am a volunteer with Refurbished Pets of Southern Michigan (RPSM) and the dogs (all breeds) go through the prison program in Coldwater, MI where inmates teach them basic commands and some tricks to find homes. Each session lasts 10 wees, and only certain inmates can participate in the program, which there is always a waiting list to get into. The dogs come from shelters, humane societies, and owner surrenders.

    Jessie

  • bxrmom, I ❤️ "Refurbished Pets"...what a great name for a rescue organization. We have a program at a prison in WA that also trains dogs for homes. Happy to hear you are doing so well with your DMT. Lots of great Info from others as well! 💕

  • @bxmom. And to everyone. I'm happy to see / read that more and more folks are using Tecfidera, and doing well with it. I apologize in advance, for making note of my negative side of this DMT. I selected Copaxone as my DMT, when diagnosed 5/2011. Life was 7 injections, 7 locations, 7 days. I used the auto-injector, set at just under 4. All worked well, very slow progression creating more difficulties with my gait in both legs. When the "3-times a week dosages were offered, I joined. That worked fine. Only 3 injections a week. In Dec 2015 I decided to try Tecfidera because it was an oral med (yeah, no more needles!). 9 months later, I was wondering why my gait was worsening and I was having occasional pains in the right upper chest. Well now, I'll tell ya. A generalized blood workup indicated that my lymphocytes count was extremely low. Less than 400. A little research revealed that blood checks are advisable when taking Tecfidera. ithin 2 weeks I was back on Copaxone, 3 times a week. No, I do not like the needles, however I just keep in mind that the injections are 3 times a week. Additionally, I research dosage limits and interactivity of all meds... regardless of what I'm told. Recently received new Rx to help fight chronic fatigue. The new med needs to be taken at a specific time, as it enhances the drowsiness effects of 2 meds... and retards the metabolizing of a third.

    In summary, please ask your neurologist about getting a blood test now, in order to set a baseline. Then, possibly a blood test every 2 or 3 months till the end of the year. Just my thoughts. Take care and hopelly all will work well for you, as concerns Tecfidera. Good evening all.

  • ZoomJoeT My Neuro did blood work before I started the Tecfidera to make sure I was able to take it. I go back to see him in a couple of months which I will talk to him about blood work. Thanks for sharing.

    Jessie

  • So tell me is this medication U switch to a oral med? And U don't have to do injections?

  • SWEETCAT Yes, Tecfidera is one of the new oral medications to help treat RPSM. No injections if you take an oral treatment. Info on available treatments can be found here: nationalmssociety.org/Treat...

    Jessie

  • Hi Bxrmom, I also live in Michigan and have been on Tecfidera since its initial release in 2013. It was my first drug since I was Dx in 2012 and didn't start any course of treatment at all. The needles were intimidating and I wasn't convinced I needed to be on any treatment because my first "attack" was just numbness and tingling in my feet/legs, which was resolved with steroid treatment and my first neuro couldn't tell me when I would have another relapse or what kind. So I felt like well why bother doing anything at all when I feel perfectly normal. Maybe I sort of hoped that it wasn't really MS. Then I had another attack in early 2013 (this time numbness and tingling in my fingers) and I realized this MS thing is the real deal and its time to get on a preventative treatment. After a lot of wrestling with insurance to agree to cover it, my first neurologist at Beaumont finally started me off on the Tecfidera 240's and I immediately had a bad response - terrible GI issues and up all night with a lot of pain and discomfort. He had never had a patient on Tec before, and apparently didn't "realize" there was a starter pack to titrate patients slowly up to the full dose. Right around that time I also decided to change doctors (logically). My new neurologist at UMich in Ann Arbor immediately said I should've been started on the 120s and took me off the 240s to restart the process. That worked much better. Since then Ive been doing very well on Tec with no relapses at all and very little in the way of side effects, other than the occasional flushing/itching and that is very infrequent. In addition, Tec has healed my psoriasis which I fought with for 15+ years on my scalp. I haven't had any psoriasis at all since I started Tec, which you may know was used in Europe for many years to treat that - so my neurologist says Im a "super responder." Well, I don't normally communicate with anyone on this website, I just read the articles and posts - but since I saw that you are from Michigan and also on Tec I thought I would say hello. Im 42 yrs old married w 2 kids ages 8 and 10. Hope you are adjusting well to the new med.

  • Hi Klclippert! Thanks for responding ;) I am located in Jackson - sort of mid-Michigan but towards the south if that makes sense lol Moved here from WI 5 years ago after not being disabled from last bad relapse from the flu in 2008 and unable to work since. I'm 38 and live with my family and bf of little over 1 year currently (we dated on/off for last 25 years). He moved her from WI too ;) Time just was never right until more recently.

    Glad you switched Neuro's as it sounds like the first one was not very knowledgeable on the meds for MS if he started you out on a high dose and should have started you with a lower dose first. That's GREAT that Tec is working for your psoriasis as well!!

    Jessie

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