Gum tenderness/weirdness?

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

Gum tenderness/weirdness?

Postby catranchergal » Mon Jun 17, 2013 3:14 pm

I'm having some gum/mouth tenderness between the sides of my mouth and my gum lines in all back quadrants of mouth, up and down. (I've never had any serious gum or dental problems.) I have no idea whether the gum/mouth stuff is related to starting on Tecfidera about three weeks ago or whether it's totally coincidental. Please chime in if you've experienced anything similar or read about anything. No other changes in meds, diet, anything else that would be obvious. Thanks!
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Re: Gum tenderness/weirdness?

Postby annemc1 » Wed Jun 26, 2013 11:47 am

Yes! Same for me! And had same "crazy" thought that I wonder if related to the med...see the neurologist tomorrow so will ask about it. Please post again if you hear anything. Thanks.
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Re: Gum tenderness/weirdness?

Postby catranchergal » Wed Jun 26, 2013 12:04 pm

Will do -- I probably won't be seeing my neurologist for a few months unless something unexpected turns up, so if yours provides any ideas, feedback, etc., I'd be most grateful if you would share what he/she said. Mouth/gums are still a tiny bit "off" but better than they were a week or so ago. My tummy issues have gotten better since I've been making a really conscientious effort to take my pills with a full meal or immediately afterward. Hope you're doing well and thanks for sharing.
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Re: Gum tenderness/weirdness?

Postby mpalla » Mon Jul 22, 2013 2:55 am

I have that also...like sore spots....blister like things about 3-4 hrs after. First few times I thought I burned my mouth on something....then made conscious effort to make sure I didn't. Called tec people "not listed as side effect". Calling neurologist in next few days....thinking it has immunomodulated my immune system to junk. Lol. Going to see if I can get bloodtests to tell.....
Let me know please what anyone has to say.....
Diagnosed 2-13-13. RRMS.
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Re: Gum tenderness/weirdness?

Postby catranchergal » Mon Jul 22, 2013 10:30 am

My weird gum stuff is still present -- pretty constant and doesn't seem to be more or less noticeable in connection with taking a pill. I may make an appointment with my dentist who is very tuned to health issues beyond "pure dentistry." The spots are not painful - mainly just feel abraded or like I have a piece of food stuck between the side of my mouth and my gum, far in the back, both sides, upper and lower. Can't see much in the mirror, but what I can see, the areas look like white, uneven lines. STRANGE....By all means, if anyone else has any ideas, experiences, feedback or insight from healthcare providers, please chime in. I'm not surprised that the drug company said this was not a known/expected side effect. I may call them just to get another patient contact in their database.
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Re: Gum tenderness/weirdness?

Postby euphoniaa » Mon Jul 22, 2013 12:12 pm

mpalla wrote: Called tec people "not listed as side effect".


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 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!
***************
Edited on 8-5-13 to correct the total number in the 2 studies -- 769 patients and 760 patients.
Last edited by euphoniaa on Mon Aug 05, 2013 3:29 pm, edited 2 times in total.
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.)
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Re: Gum tenderness/weirdness?

Postby catranchergal » Mon Jul 22, 2013 12:33 pm

Thanks -- good advice on reporting and appreciate your thoughtfulness in providing the numbers. Had a nice conversation with the drug folks who said to be sure and let them & doctor know if mouth stuff either continues or clears up. Will also share with FDA. Will post any updates and hope anyone else "out there" who has a similar sensation/side effect will join the forum/conversation "partay."
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Re: Gum tenderness/weirdness?

Postby mpalla » Wed Jul 24, 2013 10:16 pm

Went to my doctor today...said the tecfidera the "immune modifier" modified me right into the mouth sores. Had to quit the meds I was so sick, unclear thoughts and felt like I was hit by a bus AND mouth sores. I stopped. They resolved themselves! Going to ask for the lower dose...thinking the higher was just too much. I hate drugs but everyone has me scared not to take anything. For now I'll try....
Diagnosed 2-13-13. RRMS.
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Re: Gum tenderness/weirdness?

Postby catranchergal » Thu Jul 25, 2013 7:20 am

Yikes! So sorry to hear about intensity/severity of your reactions. Good to know that mouth issues resolved, but I sort of hate hearing that you had to completely stop the meds in order to get rid of negative side effects. I'm going to give my neurologist a heads up about the mouth/gum abrasions and see what he says. Thanks for sharing your experiences/status.
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Re: Gum tenderness/weirdness?

Postby mpalla » Thu Jul 25, 2013 7:59 pm

I am told be the states teaching hospital...with an ms center they will put me on 120 mg dose x 2 until I feel I can go higher. I told them if I am not feeling well..no way will I go back. I am scared to not take anything...but 8 hrs a day of clear thought process and feeling good, some days great...and some lousy...but still clear headed and me is better than 8 hrs x7 days of feeling like crap and terrible! I am a freak with all medications always have been never took much of anything till I got sick. Even migraine medicine I can't take any trip tans and most anti depressants give me a myriad of side effects...except zoloft. Crazy. Good luck to you!
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Re: Gum tenderness/weirdness?

Postby NHE » Thu Jul 25, 2013 9:29 pm

mpalla wrote:I am told be the states teaching hospital...with an ms center they will put me on 120 mg dose x 2 until I feel I can go higher. I told them if I am not feeling well..no way will I go back. I am scared to not take anything...but 8 hrs a day of clear thought process and feeling good, some days great...and some lousy...but still clear headed and me is better than 8 hrs x7 days of feeling like crap and terrible! I am a freak with all medications always have been never took much of anything till I got sick. Even migraine medicine I can't take any trip tans and most anti depressants give me a myriad of side effects...except zoloft. Crazy. Good luck to you!


Have you had your vitamin D3 level tested? If it's low, then adding D3 and supporting minerals, such as magnesium, might help.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in a higher efficacy range than several of the drugs typically used for MS with a 41% reduction in relapses.

Note: to convert ng/mL 25-hydroxy vitamin D3 to nmol/L (nM) multiply by 2.496.
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Re: Gum tenderness/weirdness?

Postby mpalla » Thu Jul 25, 2013 10:12 pm

Thanks NHE...yes I take 400iu daily. Been in touch with Jimmy leggs...she has helped tremendously tweak my vitamins and minerals. I was just relaying my bad drug reactions....my grandma, mother and my son...most things that should help we are allergic or intolerant in our systems. In this case...I couldn't wait it out...didn't have it in me. I'm hoping the lower dose tecifedera isn't too much for me. They agreed to try....had new levels checked this week....so Jimmy leggs will school me again. I am learning....was always able to do, eat and never worry until my glass house crumbled. 25 lb of steroid weight later. I still an learning! Tkx guys!
Thanks for the suggestion!
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Re: Gum tenderness/weirdness?

Postby mpalla » Thu Jul 25, 2013 10:15 pm

Oops NHE....4k iu one day and 2k the next.
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Re: Gum tenderness/weirdness?

Postby Tucute1958 » Tue Aug 06, 2013 11:13 am

Hi,
I am on Tecfidera 3 full months. I was a Dental Hygienist for 23 years and I am very immaculate with my oral hygiene. For about 2 weeks, my gum tissue has become very inflamed, irritated and sore, even bleeding when brushing. It reminds me like when I did IVIg treatment years ago. I am sure it is the medication. I now live in Las Vegas where my neurologist is not on top of things, but my MS Specialist back in NYC is. I told him about it. I had a dentist appointment tomorrow by coincidence, but had a Hygiene appt. about 3 weeks ago and he wasn't in. When I have him check, get an exact verbal diagnosis ( I know what it's called already...lol), my MS Specialist in NYC wants me to call him asap.
I feel that this drug was put out way too soon, but like many of the posts I read, I do not want to not be on anything right now. I was On Avonex for almost 15 years, maybe my choice was not the best since I still get the flush quite severely, take Zantac for the abdominal pain that was terrible....so I do not take the aspirin for the flush. When I called Biogen, they almost seem clueless as to any answers.
****There are a lot more side effects than we can imagine, but that is only my opinion.
Good Luck all, I will keep you posted. X(

Diagnosed: 1997 R/R
Most likely have MS since the late 1970's.
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Re: Gum tenderness/weirdness?

Postby Tucute1958 » Thu Aug 22, 2013 12:08 pm

Hi,
As it would be, my gum tissue started to heal a day or 2 before my dentist appointment. He knows I was a Dental Hygienist for 23 years prior to MS, and have great hygiene. He could see remnants of some irritation in some areas but wasn't really sure. I gave him the insert from the Tecfidera and he said he'd read it ( never heard back ). He did think possibly that when the wbc count goes down, possibly this can happen, but wasn't sure. I still have 2 areas that kill me upon brushing and I bleed ( never did before ). He told me if they got bad again like that, to just come in and not even call and let him look.
I know there are many side effects of the Tecfidera not listed, but I am in month 4 and still get a terrible flush usually with both doses even though I take with food. It is kind of counter productive that heat is not good for us, yet, this drug causes a flush where I go on fire and it lasts a real good while....makes me want to say, DUH!!! I don't want to take so much aspirin due to it causing stomach bleeding. I called Biogen and there is no one there to even help you with any concerns...was on the phone about 1 1/2 hours to waste my time.
Be well all!!!!
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