Having to go on Tec

[saywhat]

I'm pretty much in denial - but am having to start Tec after being on Tysabri for over 2 years (and LOVING IT.) It started making me suicidal, as did the Solumedrol. I'm now not allowed to get Tysabri OR Solumedrol for relapses (which I was still needing every ~4 months while on Tysabri for flares), and my MS specialist Neuro wants to get me started on Tec ASAP. They even gave me samples for the first 2 weeks until I get the other stuff in the mail.

I am so terrified. Tysabri helped me SO much, almost instantly. All I see about Tec is the horrible side effects and a ton of people having to go off of it. Does anybody have any positive stories about going on Tec that they can tell me? Anyone who has been forced to go from Tysabri to Tec and what it was like? How soon it started helping? Anything positive? Even just some positive vibes? I'm devastated and terrified. :'(

[tracibk]

Hi, I had very little side effects........flushing and heartburn. Didn't last long and weren't extreme. I wish you the best!!

[saywhat]

Does it seem to be working well for you?

[Seasha]

Hi saywhat - In this Tec forum you'll notice a lot of negative reactions, but people have shared what works for them regarding possible side effects. It probably would be a good idea to read them and take notes if you haven't done so already. Gaining knowledge is the best way to quell fears! Just know that everyone reacts differently and if it doesn't work well for you, you can always stop.

Here's a post with some positivity! http://www.msworld.org/forum/showthread.php?t=132374

Hope this helps you and good luck! Sending ~~positive vibes~~ your way

[REG53]

Hi saywhat, I also had to stop TY after 6yrs. which broke my heart. I did not have a rebound affect. I have been on Tec. for a little over a year. I had little to no side affects and my first year mri showed no new lesions and I have not had a relapse. So far it has been good for me.

I know it can be scary starting a new med.

I hope Tec. works well for you.

[JerryD]

Hey saywhat,
I have been on Tec for about 3 months. I want to inform you that when I started Tec, there was a starter pack of lower dose Tec that lasted 1or 2 weeks, I hope your neuro told you about that. I am not a doctor, but I did read about the starter dose. I hope Tec works for you. Good luck

[Tawanda]

I am one of the Tecfidera complainers. I just want to tell you that it is human nature to speak out when you are dissatisfied and we all too often forget to give compliments when they are due (I am working on that now as my New Years resolution..."graciousness"!)

I was on Avonex for ten years with no problems and never once did it occur to me to post that here BUT as soon as things went belly up FOR ME PERSONALLY, when I went on Tecfidera, I went on a full-fledged "dissing campaign" about it without giving it a second thought about how that may negatively influence people like yourself .

My advice would be to not even look at this section when you start Tec or you might get psyched out and imagine symptoms that aren't there! Besides trying to find a cure or vacine, genome studies for MS are looking towards matching our genetic profile with the most suitable DMT. We are not there yet, so trial and error is still how we have to do it!

Just because it didn't work out for me has nothing to do with how your body will experience the drug. I did love the fact that it was a simple pill to take...and it was a pretty sea foam color!

Perhaps we need a "ms drugs that are working well for me" section here, because mostly we only post the negative junk...mostly.

Chin up...and good luck!

[waysiek]

Hi saywhat,

I know what you mean about the fear of a new therapy when you read about possible side effects. This caused me to delay starting Tec for nearly 8 months. Finally, I decided that I wouldn't know how it affected ME until I tried it myself.

I have now been on Tec for 6 weeks and the side effects are under control. I have found that eating a meal before and part of a banana after my doses greatly helps prevent the GI distress. Everyone is different.

Reading negative comments really scared me and that magnified every side effect that I felt. Try to read as many positive posts as negative ones and think positive. You will never know until you try.

Best of luck.

[rsinger]

tecfidera

Hi saywhat,

I've been on tecfidera almost 7 months . Never had any of the GI side effects. I always take a probiotic(align) daily. Not sure if this is what saved me. Good to have some fat with your meal as well. Thought I started to have GI problems recently but this was due to a virus.
Hope this helps you.

[sarawarden]

I have been on Tec for a year and a half. I have the flushing which has varying levels of severity. Nothing that I would change though. I now know before it happens. I had my 6 month and year MRI with no changes. I call that a success!

Good luck!