Tecfidera...Any experience with this drug?
 

My neuro has told me that we can not do any more injections since I had such a nasty reaction to Plegridy and Copaxone, Plegridy being the worst. He says the rest are Interferon based. Tysabri is completely out of the equation since I am JCV positive. I am going to go for my labs in the morning so my annual MRI's can be scheduled and we are going to try Tecfidera, as long as my lymphocytes are ok. He told me if I get so much as a dime sized rash, he will discontinue the drug. I know my white count dropped with Copaxone and I was only able to do 5 injections. My symptoms are beginning to get worse and bothersome. Has anyone had experience with Tecfidera? Any experience or opinions are appreciated. Thanks.:grouphug:

My opinion of Tec is not favorable. I was on it over two years ago. I had the usual side effects of flushing and while they were unpleasant that wasn't what made me stop.

About a year into this med I had a SEVERE reaction. Uncontrollable itching from head to toe. It was like having poison ivy times 1,000 everywhere. It was so severe and not knowing how long it would last was terrifying. It subsided after about 30 minutes but that was the longest 30 minutes of my life.

My Neuro at the time seemed to feel that I over reacted and it wasn't as bad as I described. Needless to say I'm no longer using that Neurologist.

Forward to today. My white blood cell count is too low for me to begin taking any other med.

My current Neuro (whom I adore) said we need to wait for my WBC count to increase. He is very much against anyone taking Tec and will not prescribe it.

I am also JC positive and he told me about three more PML cases due to Tec use.

For me it was a huge mistake. Good luck whatever you choose to do.

Wow! Life just keeps getting more interesting everyday! My neuro's MA called me today because he received my bloodwork results. She told me that he wants me to have the liver panel redone because the results were abnormal...I'm thinking "Great! What else?" She's dropping the new order in the mail to me and I will probably have to come off the Topamax..Of course, the Copaxone and the Plegridy (even the short time I was on them) didn't help nor did the month I was on simvastatin and my old PCP just didn't understand the side effects I was experiencing was from the statin so I stopped it myself...I may not be starting Tec or any MS DMT in the near future.

I am not sure about this Tecfidera...I started the lower dose this past Saturday morning. Today, my head has been hurting since early afternoon and my ears are ringing louder than normal constantly. I feel a little airheaded (not dizzy, not light-headed), just completely different and not liking it at all. I think I will call my neuro in the morning, just so he is aware of what is going on. I just hope to be able to sleep with all this noise in my ears...lol

I've had ringing in my ears since stopping Tec. It's so loud sometimes and others not so much. I don't know if it's a direct result of taking Tec.

I've had ringing in my ears constantly for a couple of years now. It has increased in volume. I don't really think it is connected to the Tec. I had to go for my annual MRI's yesterday and needed to do a repeat liver functions bloodwork so I figured I would do it just before the MRI's. I knew I shouldn't take Tylenol #3 for the migraine so I had to put in the call to my neuro. I just started the 240mg dose today of the Tec. I am feeling a little better, physically. I am concerned about my white count, we saw a big drop in my white count with just 5 injections of Copaxone. Time will tell.

Bddouglas
I have been on tec for almost 2 years. My diagnosis is coming next week. So I Started about a month after. When I started it had flushing. As for eating I did not have issues. Saying that my stomach can handle most things. As for it working I have had 2 mri with no new leastions. I have had problems that it didn't fix. Like some food I can't eat because of taste. The entire left side is numb. This was back when diagnosed. As for the ringing in the ears I never associated with tecfidera I always Associated it with my long-term listening to heavy metal music. If you have more questions about it please feel free to ask me. I found this drug easy to take and I don't like needles so I was kind of happy about.
Kevin


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I seem to have never ending fatigue. Most days, I can sleep until 4pm. I really hate this fatigue. I was feeling better physically (less pain) now I am having more muscle pain than ever before. I guess it is just one of those things that I should call and let my neuro know about. The Biogen nurse called and woke me up today and told me to make sure I told him at my next appt., if it was still bothering me...I don't have an appt until August, so I will just give his office a call. It wouldn't be so worrisome, if it weren't for my history with meds. lol, it keeps life interesting.
Brenda

Well never ending fatigue is not a good thing or enjoyable. I feel for you. I to have fatigue but mostly at the end of my work day. I too have have alot of pain. I have been working with my Nero and we are on my second maintenance med. Not sure it's working. I am with you that you need to see the Nero before the next scheduled appointment. Good luck getting something that helps you with the fatigue. MS really does S@!# and we all have problems but what works for one doesn't work for others. Let us know how things go.

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