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Hi there -- I'm having a mild relapse with numb fingertips and increased temperature sensitivity, and my equilibrium's a bit "off." Because Tecfidera doesn't seem to be doing the job on managing relapses effectively plus it's causing the unpleasant side effects that haven't let up after 90 days, I'm dropping it. I'm going to try no meds for at least a little while to see what happens (mainly hoping mouth stuff will heal and queasy stomach issues will go away).

I've been diagnosed for about 17-1/2 years and have been on meds pretty much the whole time, first Betaseron and then Copaxone. (My neurologist's PA also mentioned Aubagio when I told her about my issues with Tecfidera, but what I've read about it doesn't make me eager to be one of the early users...)

Thanks for posting about your experiences and hope you begin feeling better.

Sorry to hear. I was less than impressed with them. They wanted to argue and down play my symptoms. Hope you have better luck with tecfidera. FYI...you can take a baby aspirin...the biogen people said that would help 81 mg I believe. I took a 325mg one...so I didn't try the baby aspirin to see if that was true. I trusted Copaxone people more than Biogen people kind more so in my opinion. Have a good nite.

I have had all sorts of mouth soreness... gums, tongue, palate.. and a few of my teeth especially hurt. It feels like the enamel is gone or so thin it may as well be gone. My father is a dentist and checked for cavaties & decay - none found.

My teeth are very tender when brushing but no other time. Not sensitive to hot or cold or sweet... only when brushing.

My gums feel tender and are trending towards red instead of pink. And halitosis... oh my.

Something else I've noticed - the fat in my belly is more lumpy than before. I don't know how else to describe it...

I stopped taking Tecfidera about 4 days ago and the dental pain is less intense.

I will most likely not go back to taking meds. I was on Copaxone for 18 months. Stopped it and took nothing for 2 years until Tecfidera was approved. I've been on it for 7 weeks. I felt better and had fewer problems when taking no meds.

I feel better too. Bad time with Copaxone and tecfidera. Trying avonex on Monday...3xs a charm or I'm out. Will look into diet...drs have m scared is all. Newer diagnosis.

mpalla wrote:I feel better too. Bad time with Copaxone and tecfidera. Trying avonex on Monday...3xs a charm or I'm out. Will look into diet...drs have m scared is all. Newer diagnosis.

My first dose of Avonex incapacitated me with a fever for nearly 20 hours. I strongly recommend that you take 400 mg of ibuprofen at the time of your shot and then another 400 mg about 4 or 5 hours later. Some the morning of the next day can also help to shake off the remaining side effects. In addition, my experience was that it was better to take the shot mid day rather than try to sleep through the side effects. My body did not thermoregulate well on Avonex while I slept and I frequently woke up with chills and the shakes. Managing the side effects during the day was much easier. For your first shot, give yourself the whole day in case you have bad side effects in spite of the ibuprofen. You can then schedule it more appropriately once you know how it effects you.

NHE

Thanks NHE. I have done extensive research on this website to read ALL the info I can. I'm scared but optimistic. I have read lots and have recruited my sister to look after me as I don't want to make my teen responsible for his mom. Any other helpful hints? Snowsuit?lol the chills are they because you are cold or body's response? Just curious.....thanks

mpalla wrote:Thanks NHE. I have done extensive research on this website to read ALL the info I can. I'm scared but optimistic. I have read lots and have recruited my sister to look after me as I don't want to make my teen responsible for his mom. Any other helpful hints? Snowsuit?lol the chills are they because you are cold or body's response? Just curious.....thanks

I always figured that it was part of the Avonex induced fever. Early on I used to use a small portable heater to help me sleep more comfortably. However, one day I woke up and found the end of the extension cord I was using with it had melted. I'm lucky it didn't short and start a fire. Anyways, injecting around noon worked best for me. The main hurdle of side effects would pass in the first 6 hours or so, manageable with ibuprofen, and then I could sleep much better. However, another 200 mg of ibuprofen the following morning would help take the remaining edge off.

NHE

I took my shot today...1/4 of one as directions say. No issues! . Just took two advil this am and will two more this evening. Hopeful.....real hopeful!

mpalla wrote:I took my shot today...1/4 of one as directions say. No issues! . Just took two advil this am and will two more this evening. Hopeful.....real hopeful!

Starting with a lower dose should help. In 2000 when I started, there was no mention of titrating the dose. My first shot was the full 30 µg and did me in for a day.

yes! I am having tenderness, and swelling everywhere..but no bleeding while brushing. I switch between a regular brush and a sonicare diamond clean. I also use a waterpik when I feel 'gunky' stuff in there, like flax seeds.

I am so glad (well not glad but relieved) to see these post. I had a appt with my neuro on Monday and when I told him about the gum problems he said he never heard of such. I don't like anyone having problems if any kind, but nice to know its not some random hypochondriasis that I am putting on myself!
What about migraines?

I personally have migraines and have for many years. Probably 5 years the worst. I think some is my MS. I get them from medications too. God awful barfing ones.

I doubt it is only my neurologist "brushing off" the dental problems. Wonder if they are getting some kind of gain for keeping patients on the Tecfidera and making it seem incident free.
5th week in on the Tecfidera and my teeth are bothering me even more, the migraines (oh ya the awful barfing ones) are more frequent and I feel like my balance is worse, numbness is spreading and bladder control definitely isn't better. But seems no one takes these side effects as being actual side effects.

Barefoot I have seen now 5 neuroscience and am starting Tysabri next week. Drs work for you and if your body feels worse or when I felt I'd have to die to feel better...my answer was obvious. So sorry you are having a hard time also. I NEVER took anything but a multiple vit and zoloft before I was diagnosed because of my medication and herb allergies.
The first neuro asked ME what drug I wanted then proceeded to shove Copaxone down my throat...then well my ten minutes were up....like I was the 2k prescribee and he won a trip. None the less I finally found a caring one...#5.
I stopped and quit Copaxone, tecfidera, avonex and going to try Tysabri (JC negative)...if this one peters out too...I am done!! I figured if in 12hours I felt good, mind aware for 6....was better than in bed for 12!!! AND barfing....I understand am in the same boat. You have to trust your body too. Good luck. I'll update you on Tysabri....