Tecfidera Question

[Jifr]

....is 3 months long enough to know if the Tecfidera is having any effect?

Does anyone have any idea?

Thankfully, I have a 3 month follow-up with a new neuro on Monday.  Unfortunately, I have had and continue to develop increasing mobility issues with my right leg (which will be entirely new).  My partner thinks the Techfidera isn't doing anything and wants me to go back on Betaseron............. :: sigh ::.

[Jifr]

3 level mri done today.  Definite new t spine lesion.  Currently enhancing.  Will go on iv steroids for now.  Will stay on tecfidera and see if I have another flare any time soon...

[Jifr]

The official word from the neuro visit yesterday....

He will make the determination that the medication isn't working if I have a lot of new/enhancing lesions since my last MRI in May.  He said if it was just one or two, that might not be a big deal and we wouldn't make a medication change.  

Of course, if the medication is NOT working....it's not like I have any options to consider since I've already done all of the traditional DMDs.  :-/

I'm just going to keep my fingers crossed and plan on staying with the med for now.

[sllowe]

Hi Jifr,

I second what Ess says about 3 months not being long enough to tell if any DMD is working for you or not.

The worst thing about it is it's "medicine" and our natural thoughts on medicine is we take it to "get better." Unfortunately, there is not fix yet to this disease, so we take the meds available to us proven to reduce flares, progression and activity in some with the hopes that this potential "cease fire" on our CNS eventually leads us to .....dare I say.... better. At least better than our worst days.

It's my opinion to give each med we try (short of an allergic reaction, or major side effect complications) their fair shake. You could of experienced this as well on the Betaseron. Heck, these things can happen from existing damage as well. Not necessarily new activity - it's just so varied. One thing is for sure is time will tell the tale. Are you able to get some PT for your mobility?
Hope this helps.
-Shell

[essdipity]

From all I've heard and read, 3 months isn't long enough to tell if ANY MS treatment is working. I believe 6 months is considered minimum, but even that might be a guess. Some doctors allow a year.

The thing is, we don't know how long a flare may have been brewing before it's actually experienced. If you switched right from Betaseron, it's possible that that had stopped working and that's why you had a flare. That nurse's comment was pretty dumb, though. As if you didn't know that already.

Kyle, you may have forgotten that Tec is a pill, not an injectable. Makes it a bit easier to swallow, har har.

ess

[PastorDan]

And I, going strictly by gut feeling, think that two relapses per year would lead me to wonder if the Betaseron was doing much.  I'd also suggest that 3 months is probably not enough time to compare.  Again, just gut feeling.

Best wishes.

[kwarendorf]

Hi Jifr -

Here's my 2 cents. If it seems that Tefidera is not doing the job, I would ask your neuro about Tysabri. It's "stronger" than Tecfidera, and while it is not an oral med, Once a month infusions seem preferable to daily injections.

Kyle

[Jifr]

So - I called and spoke with a Tecfidera nurse.  There is not an answer to my question.  They don't know yet if there is a minimum time frame in which we should expect to be able to say this medication is or is not being effective.  

She said, "It is designed to keep you from having a flare".  

Well, if that is the case, we are not doing so hot right now.  :-/

So - my question to the neuro then will be, do I continue on the medication and see if my traditional number of flares keeps up (which is usually at least 2 per year - my last confirmed enhancing spinal lesions were in May).... or do I switch.