Fatigue?

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.

Re: Fatigue?

Postby Nica30 » Mon Nov 18, 2013 10:39 am

Hi,

I just began taking Tecfidera and I have been going to sleep right after taking it. I spoke to a nurse at my neuro-optomologists office and explained to me that the doctor has never heard of fatigue being a side effect. I can only take the night time dosage because I drive during 90% of the day for my job. It's sad that doctors don't know all the side effects of medication or share them all with you.
Nica30
Newbie
 
Posts: 1
Joined: Mon Nov 18, 2013 10:31 am

Advertisement

Re: Fatigue?

Postby euphoniaa » Mon Nov 18, 2013 11:55 am

Nica30 wrote:Hi,

I just began taking Tecfidera and I have been going to sleep right after taking it. I spoke to a nurse at my neuro-optomologists office and explained to me that the doctor has never heard of fatigue being a side effect. I can only take the night time dosage because I drive during 90% of the day for my job.

It's sad that doctors don't know all the side effects of medication or share them all with you.


Below is what I wrote in another Tecfidera thread that may explain why ALL the side effects aren't known or listed for brand new meds until years after their release:

I'm sorry to hear that you both may have an additional unreported side effect from Tecfidera, so please DO report it to the FDA. The numbers in drug studies are relatively small, so the full side effects can't possibly be listed until years after they have been in use in the general population.

Here's a link to the Tecfidera "Official Prescribing Information": http://www.tecfidera.com/pdfs/full-pres ... mation.pdf where you can find all the reported adverse events and percentages.

It shows that, during the 2 studies, only 1529 total patients (769 patients and 760 patients) even took the drug before it was approved. You should report any new side effects to the FDA, just in case they turn out to be just as prevalent as the others on their drug insert.

From the Official Prescribing Information:
"To report SUSPECTED ADVERSE REACTIONS, contact Biogen Idec at
1-800-456-2255 or FDA at 1-800-FDA-1088 or http://www.fda.gov/medwatch.

Good luck!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 783
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.

Re: Fatigue?

Postby litljac73 » Thu Nov 21, 2013 12:46 pm

I just started Tecfidera 6 days ago. I thought it was just me with this fatigue. I've been taking B12 injections to fight fatigue prior to this, and I was wondering why it was not working as of lately. I have experienced the flashes...whoa, when they hit....but, they are not as bad as I thought. The nausea has been minimal as well...so far. I start my double dose (240mgx2 a day) tomorrow (ugh). I am dreading this. I can't seem to wrap my head around taking this drug when it was initially made to be a mold retardant for shipping/storing products, such as shoes, mattresses, etc. I spend everyday wondering what genius thought this would be a good idea to put into our bodies to fight an already PIA disease. I guess I am just venting. :cry:
litljac73
Newbie
 
Posts: 1
Joined: Thu Nov 21, 2013 12:30 pm

Re: Fatigue?

Postby MSandI » Thu Nov 21, 2013 1:07 pm

Hi littljac,
I to am due to start this drug. For some of the things you said about it are what is stopping me. I am scared that if I do take this drug, down the road will happen to me as a result. Cancer? At the same time, I am scared to not take it, what if it is the solution? Since joining this site, I have learned more about ms than I did from the neuro. My suggestion to you is read all over this site, including long ago post and then talk to people and ask questions. Very friendly place
Ann :-D
MSandI
Family Member
 
Posts: 83
Joined: Mon Nov 04, 2013 5:19 pm

Re: Fatigue?

Postby jaredboy » Mon Dec 05, 2016 10:11 am

Sorry to necro an old thread from 3 years ago but it deals with my current question.

I am dealing with extreme fatigue and would love some feedback:

I started tecfidera 11/7/16. The next day I felt tired, but lasted through the day at work. The 2nd day was so bad (feeling dizzy, lightheaded or so I thought) that I left halfday from work. I had a bunch of issues going on at the time so I wasnt sure if it was the result of getting over the flu, having a solu medrol 3 day infusion the week prior, an MS flareup or my new regime of medication and supplements the doc put me on. The thing is I had reported feeling weak and fatigued/lightheaded the week before taking tecfidera which is why the doc had prescribed the 3 day IV, so I sort of ruled out Tecfidera being the cause of the fatigue. Now im wondering if these symptoms were one and the same.

Fast foward a month later, the fatigue is just out of control every day; but sometimes feeling 'bad'. Its hard to describe but sometimes i feel so badly (not sick to my stomach but just bad as if you are getting sick with the flu lets say), but I'm starting to realize -or suspect at least- this may all be a side effect of Tecfidera.

Lastly the interesting part is I was on Tecfidera in the sumer (July, August, September) before having to stop due to change of insurance and did not have these symptoms at all.

So if you would please kindly share your experience or opinion:
- Do you get fatigued being on Tecfidera or did you at first and did it eventually go away once your body got used to it?
- Doc is now going to prescribe provigil - eesh some of the side effects I'm reading about that make me uneasy. Have you taken this or combo'd Tecfider and Provigil?
- Could this simply be MS fatigue and the Tecfidera will relieve it after some time?

Thanks very much for any replies. I'll be sure to follow up on this thread too in case I can share what ultimately helps me through this. The doctor is also having me exercise regularly and it is actually helping my muscle weakness- i was getting stabbing pains/weakness in my arm and leg and the exercise actually seems to be helping!
jaredboy
Newbie
 
Posts: 4
Joined: Mon Dec 05, 2016 9:56 am

Re: Fatigue?

Postby lyndacarol » Mon Dec 05, 2016 12:34 pm

Welcome to ThisIsMS, jaredboy.

Please permit me to ask a totally off-topic question… I'm curious: If you have had a vitamin D test called "25-Hydroxy D," will you share the actual test result number with us?

In January, 2016, my test result was 24 ng/mL – frankly deficient.
User avatar
lyndacarol
Family Elder
 
Posts: 3254
Joined: Thu Dec 22, 2005 3:00 pm

Re: Fatigue?

Postby jaredboy » Tue Dec 06, 2016 4:24 am

Hi thanks!
I do not believe I have had that specific test, but as part of seeing a new neuro who specializes in MS, she has ordered a pleothora of tests and bloodwork.

My vitamin D from blood tests is low, (I dont remember the actual number I want to say 17?) and she wants it at 70. Again i dont know if thats a specific test or just normal blood testing.
As a result she has me taking 10,000 units daily of Vitamin D. About 3-4 weeks later or so, the last test showed it at 40, so she has me continuing to take this high dose.

Now was this relating to the fatigue question(s) I posed or just out of curiousity?

Regardless I wanted to share this: I got a good nights sleep last night and felt very good waking up this morning. I took the Tecfidera and about 20-30 min later I started feeling the lightheaded/dizzy fatigue feeling.
Im really starting to suspect this is from Tecfidera.
If indeed this is the case, do you all think this will get better as my body gets 'used' to the meds? I believe they have said it takes around 6 weeks for those who get GI issues (thank goodness I dont have that or else Id really be in trouble) so I'm hoping this will go away in another 2-4 weeks?
jaredboy
Newbie
 
Posts: 4
Joined: Mon Dec 05, 2016 9:56 am

Re: Fatigue?

Postby lyndacarol » Tue Dec 06, 2016 11:04 am

jaredboy wrote:I do not believe I have had that specific test, but as part of seeing a new neuro who specializes in MS, she has ordered a pleothora of tests and bloodwork.

My vitamin D from blood tests is low, (I dont remember the actual number I want to say 17?) and she wants it at 70. Again i dont know if thats a specific test or just normal blood testing.
As a result she has me taking 10,000 units daily of Vitamin D. About 3-4 weeks later or so, the last test showed it at 40, so she has me continuing to take this high dose.

Now was this relating to the fatigue question(s) I posed or just out of curiousity?

Regardless I wanted to share this: I got a good nights sleep last night and felt very good waking up this morning. I took the Tecfidera and about 20-30 min later I started feeling the lightheaded/dizzy fatigue feeling.
Im really starting to suspect this is from Tecfidera.
If indeed this is the case, do you all think this will get better as my body gets 'used' to the meds? I believe they have said it takes around 6 weeks for those who get GI issues (thank goodness I dont have that or else Id really be in trouble) so I'm hoping this will go away in another 2-4 weeks?
If you are in the US, the numbers you mention sound like a 25-Hydroxy D test. It is not part of any standard blood test panel, and it must be specifically ordered by the doctor.

Any result below 30 ng/mL is deficient. The California-based group, GrassrootsHealth (http://www.grassrootshealth.net) recommends a healthy person's vitamin D level should be at least 40-60 ng/mL; vitamin D experts and some neurologists recommend 80-100 ng/mL for patients with neurological symptoms. 10,000 IU daily sounds like a lot, but historically, mankind (and even lifeguards and those who work outdoors today) got 15,000-20,000 IU per day.

Extreme fatigue can result from vitamin D deficiency. It can cause muscle weakness and feeling too easily fatigued. Vitamin D affects every system in the body.

Vitamin D deficiency symptoms explained: the top 9 warning signs, June 11, 2014
http://www.naturalnews.com/045528_vitam ... ition.html

"Some people who have a vitamin D deficiency have no immediate symptoms. Those who do have symptoms may experience restless sleep, muscle cramps, general FATIGUE, joint pain, muscle pain or weakness, inability to concentrate, headaches, constipation or diarrhea, and bladder problems."


I have never tried Tecfidera, I can offer no opinion.
User avatar
lyndacarol
Family Elder
 
Posts: 3254
Joined: Thu Dec 22, 2005 3:00 pm

Re: Fatigue?

Postby jaredboy » Wed Dec 07, 2016 2:45 am

ok thanks for that information, that is helpful.
You are probably right that its the same test.

The thing is, If I were at 17 or whichever low number below the standard of 40 you mentioned below, why wasn't I feeling lightheaded and fatigued for many months prior?
This all started around the time I started Tecfidera which is what is leading me to this conclusion.

Thus I am contemplating NOT taking it this morning to see if there's a difference. Would this be a bad idea to skip a dose?
jaredboy
Newbie
 
Posts: 4
Joined: Mon Dec 05, 2016 9:56 am

Previous

Return to Tecfidera (BG-12, dimethyl fumarate)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service