For Those 6 Months r more Into Tecfidera (hinder or help)

[Tide]

How are you doing on Tecfidera?
Are you still taking it for dropped it.

There has not been much posted on this medication after 2013 except from people just starting it for the first time.

I am becoming increasingly concerned about what tecfidera is really doing to us.
Not a lot is known how this med works or what it might do in the long run.
PML has now been linked to it but who knows what else down the road.

I personally have fatigue so bad and I know its due to tec. About an hour after I take it I can feel it coming on and taking me down.
4 hours after taking it I must grab something to eat or suffer the consequences later stomach wise.
I'm dizzy all the time and gawd forbid I bend down or tip my head back or move it rapidly in any
direction.
My mobility is a lot worse and I'm losing my ability to even type.

Is this really doing anyone any good?
Is this really helping anyone who has MS or is it just coincidence you haven't had a flair up?
I hadn't been on anything for 10 and never had one. No MS drugs at all. Before that copaxone which I also didn't think did much.

I can't help thinking there is a lot of money being invested in these meds but no real proof any do any good.
If 11 years ago someone said eat an apple a day to reduce the flair up of ms, I would say wow, it really worked because again, I was symptom free.

I had stock pilled tecfidera for 4 months making a move from Cali to the UP Mi. I could not afford to feel sleepy and exhausted during that time but now I've been back on it for almost 7 months now.
During this time I got tossed into paying for Medicare and lost my market place insurance which with help I paid only 10 bucks a month.
Now I don't know what I'll be paying or if I can even continue to afford it or any medication for ms.
Tecfidera makes me so tired, I'm not sure if I want to continue it anyway.
Cant go back to shots as my hands wont work that way.
Gilenia has its own slew if issues too and Im not sure my heart would survive the first initial dose.

Since the loss of my regular insurance and my moving, I have not found a good neurologist.
I'll have to travel 2 1/2 hours to the closest city for one. I have about 3 1/2 months of tec left from when I stock piled it.

I'm tired of sleeping all the time. That's not living. When I had stopped taking tec while moving, I gained my awareness back. I was able to buy a home.
Now, I'm sliding back into sleeping all day, dizzy when I'm awake and I don't see a slow down in progression in my ms symptoms.

So for those that have been on tec at least 6 months or more, what is your experience with it?
Do you really feel this does you any good or do you feel this med is hurting you more then helping?

Again, I just wanted an updated 2015 thread on this.

Thanks

Gale
(hope I made sense)

[Tide]

Update:

CVS just called and the cost to me is only $3.48 a month for 240mg Tec.
Better then when I had private insurance but the side effects are still with me.
I'm far away mentally and lightheaded. The ringing in my right ear wont stop and its sooo loud.
And now, my ear keeps popping like when coming down from a high altitude.

[Diamond57]

Hi There!

I live in the U.P. and I have a great neurologist I have to drive to Marinette, WI to see.

Susie Q.

[JerryD]

I hear what you're saying. I have been on Tec for about 3 or 4 months. I would get into my MS neurologist's office, asap. I think you have more going on with your situation than Tec problems. I am glad that you called it to our attention. I will be on the 'look out' for any of this weirdness.

[Tide]

I

Hi There!

I live in the U.P. and I have a great neurologist I have to drive to Marinette, WI to see.

Susie Q.

I'm in Ironwood and guess I'll have to find one in Duluth.
My neurologist in Bakersfield is still kind of there for me but can only do so much long distance.

Today, not sure if its a cold I managed to catch or the tec but my ose wont stop running.
Been doing that for about a week but today is the worst,

I didnt take my tec tonight on purpose because I have to be awake to get my car registered in Mi and of course my license.

I already feel better and more awake but after I get that done and get back home, I'll be starting it up again.
I'm not sure its worth it though if this feeling doesn't stop.
Think I'd rather suffer the ms issues then be brain dead.

I hope this med gets looked at more closely as to what its doing to us physically.
I do feel this is hurting people in the long run more so then our ms could ever do and I cant be the only one that feels this way.

I'll be seeking a new neurologist right away.

[xmsbehavinx]

Yooper

Hi there!!!!
I'm a Yooper also.. Way up in Houghton County Nice to meet you. I'm on Tecfidera.. have been for over a year. I'm not sure if it is helping me at all. I'm getting worse.. more so this winter. I've had to really bad relapses, one in Nov 2014 and one last month. The one last month had me crying because I was so scared. Anyway, I had yet another MRI and yup, another Lesion has appeared in my brain. So, is Tecfidera helping? How do we know?

Hi There!

I live in the U.P. and I have a great neurologist I have to drive to Marinette, WI to see.

Susie Q.

[xmsbehavinx]

yooper

I don't think my post showed up. Forgive me, I have not used this site in at least a year??

I'm a fellow yooper and wanted to say hello.

Hi There!

I live in the U.P. and I have a great neurologist I have to drive to Marinette, WI to see.

Susie Q.

[REG53]

I have been on Tec. for over a year. My one year mri showed no new lesions and I have not had a relapse but my legs seem like they are getting weaker.

[mels_dragon]

I've been on Tecfidera about 18 months and I've noticed my 'disabilities' have gotten a bit worse. I was the person to look up to; energetic (to a point), helpful, not MSy. I had enough energy to clean the house and still enough to make dinner. Now I feel a bit more melancholy, my mood isn't as chipper, and my energy seems to be on vacation. I feel like everyone else with MS (sorry if I offended anyone). I know it could be the disease but I don't feel that it is.
I started out on Bataserion in 2009 and for 2 yrs. and I felt it was working/helping. Then Extavia came out and I didn't feel as good on it. I also lost A LOT of weight and the shots kept getting harder and harder to do. Painful lumps started to appear and so psychologically and emotionally I can not give myself shots anymore. So, I was VERY happy when Tecfidera (BG-12) came out .
But now, after almost 2yrs, I'm feeling I need something better and I have been contemplating switching to Tysabri. My blood test shows I'm JCV - and my latest MRI (first one in 6 years) showed no change.
I'm wondering if anyone could let me know their experience on Tecfidera and/or Tysabri. Has anyone made the change from Tec. to Tys.? If you'd experienced my decline of mood, energy while on Tec., does it get better?

[allHailye2]

i was on tecfidera for 19 months. i didn't have side effects like you are describing. my side effects were a runny nose & very occasional flushing. i would have stayed on tecfidera if it hadn't lowered my lymphocyte count. it's very low now.

we all take these meds in good faith because we really don't know if they're working or not. you can still progress even while taking a med because nothing slows progression, reduces relapses, or disability by 100%.

[javaaddict]

We all take these meds in good faith because we really don't know if they're working or not. you can still progress even while taking a med because nothing slows progression, reduces relapses, or disability by 100%.

Right. That's exactly right.

I've been on this for 18 months. Before I started taking it, I had a pretty solid pattern of flairs going on. Since taking this, I have had no flairs, and my MRI is consistent my pre-tec baseline.

So I guess it's working. You're right, it could totally be a fluke. I don't think I'm that lucky, but who knows.

I know the drug is affecting me because on the few occasions where I have missed a dose, I have felt considerably better. Like I actually have some energy to do things. That's usually how I know I forgot to take it. The fatigue is pretty bad. Right now I'm just sitting and typing and trying to rest because I have to go in tonight to work and I am going to need all of the energy I can get.

[rsinger]

tecfidera

Been on tecfidera 7 months. Lymphocyte count still good at this point. However I will be tested every 3 months to be on top of the lymphocyte count since I am JC virus positive.
No real issues other than runny nose and softer more frequent bowel movements. I do worry about what this drug may be doing. It's always a risk/benefit thing. I personally am not effected by my MS.If things don't go well on this treatment I'll probably go untreated for a while. In the past 3 years I've been untreated longer than I've been treated.
I guess I am more fortunate than others.

[Marco]

Direct Comment to Gale
I’m truly sorry you are having a rough go on Tecfidera. I wish I could take your troubles away, but that isn’t within my power. I failed 5 treatments before doing well on Tecfidera so I can certainly relate to harsh medicine reactions. The goal is always to follow medical guidelines and we aren’t qualified, or permitted, to give medical advice here. I would call your former neurologist’s nurse line and have a nurse call you back. They may want you to stop based on your symptoms, at least, until you find another neurologist in your area.

Thank you for sharing your difficulties with MSWorld so we can all learn from your experience.
A personal lesson learned from your story is when, and where, possible never leave one neurologist without already having a replacement.


General Commentary
In under 2 years, Tecfidera has rewritten the Multiple Sclerosis (MS) disease modifying therapy (dmt) landscape. Compared to other MS medications, Tecfidera has a stellar efficacy rate and very good safety record. It's nearly twice as effective as 7 of the top 10 disease modifying therapies. For most patients, the side effects are easily manageable, transient and inconvenient. Another major benefit of Tecfidera is how quickly it removes from your body after stopping it (and without a procedure like plasmapheresis or activated charcoal). That said, Tecfidera is still not the correct medication for every MS patient. Roughly one-third of all MS patients will quit whatever therapy they select.


It generally takes months for a patient's body to fully adapt to a new medication. All of our medications have the capacity to be harsh to any particular person. I accept that I am currently trading a slightly lower quality of life for hopefully a much better long-term quality of life. That doesn't mean you should accept unacceptable side effects, but we aren't taking an aspirin. Don't be afraid to call your doctor, medication support line, or specialty pharmacy and tell them what is going on. No one wants you to experience unnecessary hardship.


One patient has contracted PML while on Tecfidera and that patient should not have been on Tecfidera. Any patient/doctor that continues taking/prescribing a medication against the warnings in the prescribing information does so at risk. For 3 years, both neurologist and patient were aware the patient's lymphocyte count was in a critical danger zone. Yet, they continued taking the medication partially designed to lower lymphocyte counts. The results were predictable as they would be on every MS medication in the higher tier of efficacy. The four patients that contracted PML on a a chemically-similar medication, fumaderm, also had extenuating medical conditions that should have given physician and patient pause.


What many MS patients do not realize is the many lesions will not cause symptoms and will never appear on an MRI scan. The silent damage will cause a percentage of patients to reach SPMS without ever having a documented symptom or flare up. Silent progression, demyelination and brain atrophy will occur often leading to dramatic jumps in disability. For non-progressive patients, our medications are most effective early and lose effectiveness over time. You cannot play "catch up" later by starting a medication after tangible deficits have occurred.


MS is a chronic progressive disease and you can still have progression, relapses and MRI activity while on any disease modifying therapy. This is why keeping a symptom journal and maintaining a running dialogue with your neurologist is critically important. A neurologist needs to understand how you are responding to a medication so changes can be made. Too often, MS patients begin taking a MS medicine without having a clear understanding of what to expect, what to accept and when to call for help.


Until a cure is available, we can all commiserate while listening to the Huey Lewis' song, "I Want a New Drug." As always, I wish you all well ...

[mack1z]

Almost 1 year in

In April I'll have my 1 year MRI to determine if it's helping to slow the lesions. As far as how I feel, I haven't felt any severe side effects after about the first 4-6 weeks (bad stomach issues).

[KateA2]

Tec is a winner for me so far

I'm 18+ months into Tec therapy, and my MS doc is saying I am as close to remission as she has seen. I have damage from prior flares but my brain and spine MRIs are clean. My scans look perfectly normal, except for a thoracic mega-lesion that was 4+ segments, but is now 1 segment. I have not had a flare in 3 years, this follows a pattern of 2 smaller flares/year and one hospital-severe in the last 5 years.

I had bad side effects with Tec the 1st 6 months. I had awful fatigue, nausea, GI issues and flushing that lasted hours each day. These lessened and now I have flushing that lasts < 60 mins and a runny nose for an hour or so most days, but otherwise feel ok. My lymphocytes initially dropped by 50%, then slowly climbed to 10% below pretreatment levels. So far so good!