Forum

Tecfidera and recurring infection?

Hi All, :slight_smile:

I just wondered if anyone else had any thoughts or similar experiences?

I’ve had a ‘sensitive’ tooth for a few years now (crowned, but roots not removed). Every now and then, it wold become a little painful and sensitive, but this would only last for a day or so and then be back to normal.

About a week after starting the low dose of Tec, this happened again, but rather than recover, it became fully infected. I went to dentist and was given antibiotics.

Upon increasing the dose of Tec, once again it became infected, and I was given more antibiotics and decided that I’d have a root canal (to sort it out for good), so just had to wait until the infection was gone.

When I increased my Tec again, yup, more infection. By this time, I’d just been told I had breast cancer and would need to have surgery. By this time, I was really concerned that I was taking something that could affect my immune system at a time when I needed it to be fully functioning. So, I left a message for the MS nurse, asking if she could contact me and that it was important.

A week later (and hearing nothing), I started more antibiotics, stopped taking the Tec, and left a message for the nurse, who called me back a few days later.

She was adamant that the tec couldn’t have caused the problem with my tooth, was very unhappy that I’d stopped taking it (as I’d have to start on the low dose again), and felt compelled to remind me how expensive it was (she was not a happy bunny!).

From my point of view, I felt that I’d weighed up the possible options (with the information that I had available), and with the belief that I may have had a low grade infection for some time. I also thought that Tec can make you more vulnerable to ‘opportunistic’ infections?

I’ve not heard from her since…

Sorry for the length of the post (and thank you for getting this far :-))!

Mags :slight_smile: x

Hi Mags,

I’m sorry, I don’t know anything about the truth of it, but I too would grow suspicious if I kept having a recurrence of an infection every time I increased a new drug.

I also think it’s a damn cheek of the nurse to try to guilt-trip you about non-compliance with your meds. Lots of people don’t comply, for various reasons. In your case, you had a serious unrelated health issue, and not unreasonable concerns - based on an observable pattern - that your DMD might be undermining your general health.

I don’t think it’s for her to stand in judgement about why somebody with a lot more on their plate has opted to discontinue their DMD for now. And I know drugs (especially DMDs) are expensive, but I don’t think that should ever be a factor in whether the patient elects to continue or not.

“I mustn’t quit, because they were so expensive”? The hospital’s budget is NOT a relevant consideration. Well, obviously, it is for them, but shouldn’t be for you.

It would have been preferable to speak to someone before just stopping, but you did try, and they didn’t exactly make it easy, did they?

In your place, I can’t say for sure I wouldn’t have done exactly the same. In fact, I think it’s quite likely I would - especially after waiting a week for any response.

Tina

x

hi mags

your white blood cells count is highly significant when you are taking tecfidera.

in my opinion it was amiss of your ms nurse to not check your white blood count.

white blood cells combat infections so you were right to be concerned.

grrr!

i have no idea what you should do now but whatever, you have done nothing wrong.

hope your tooth gets sorted soon and with minimum of pain.

carole xx

okay… so from my experience and in my opinion, (for that is all that this is)… the short response:

i don’t think tecfidera has anything to do with your tooth ache. and i think you were mistaken to stop taking it.

to expand upon the above:

for sure, white blood cell counts are reduced by tecfidera and then they work to recover to almost what they were before you started the drug. but does this reduction cause a greater and meaningful vulnerability to recurrent infection? i do not think so.

personally, my missus is a bugger! she is super healthy. a cold (man flu) that slayed me for 10+ days would be brushed off by her in about 36 hours. her teeth never ache, whereas my dental history is stereotypically British (ie. farking awful; extractions, root canals, enormous fillings…)

But since starting tecfidera, i have had more less no flus or colds (even when my missus was stricken several times by a seasonal bug for over a week!) my teeth continue to flare up from time to time, but with no greater frequency than before.

and so no… you have had some bad luck. brush twice a day, mouth wash and floss before bed time, every day.

caveat: the lack of correlation between my tecfiera taking and an increase of infection might be coincidental to the benefits of my enhancing considerably, the quality of my diet and vitamin intake.

one final thought: regarding your MS nurses’ petty, penny pinching attitude; they can go shove their guilt trip right up their hoo haa. you did what was best for you, as we are all entitled to, especially when phone calls / messages were not being replied to. and besides, who gives a toss about the cost of tec? it’s expiration date is years away; what you don’t swallow today, you simply take tomorrow!

the best of luck to you. remember… there is no such thing as a poor dentist.

1 Like

Hehe! Thanks so much all. :slight_smile: I suppose that one of the things that I considered is that they don’t want you to start if you have an ongoing infection.

You could be right Paolo (and thanks for making me smile! :-D), I suppose I just thought it was a heck of a coincidence as it hadn’t happened before. I’ve had a couple of wound infections since (never had so many antibiotics in my life!), so I’m ‘at peace’ with my decision now.

Root canal is all done, offending lump removed, so I’ll just get through the rest of the RT and start again in the New Year.

Thank you all again,

Mags :slight_smile: xx

2 Likes

your hear things like immuno-modulatory or immuno-suppressive drugs and the mind works overdrive, to identify risks (coz life is already challenging enough,) and microanalysing any suggestion of a spot, fever, or inflammation.

i have a dog, who is often dirty and with whom i often fight and thus get scratched by. should i worry?

i play hockey (the on ice version) and my god the hacking and spitting that goes on on the bench. it is awful for the fittest of persons. should i quit for a sport with seemingly less ‘quagmire of regurgitation’?

i have bad teeth and a weakness to the man flu. will these escalate to a plague like malady?

such Qs were posed to my neuro over a year ago and he wasn’t bothered in the slightest. indeed, thus far, all such fears have been for nought.

1 Like

Yes, I’m a firm believer that ‘a bit of dirt never did me any harm’, and I’m sure that the lack of exposure has done todays kids no favours.

I’ve always been fairly robust, not a clean freak (apart from in the kitchen, which I think is justified (not poisoned anyone yet!), and love kissing my cats (what cat mum wouldn’t?). I garden without gloves (nothing like a bit of dirt under your finger nails (and sometimes toe nails too!) to aid a sense of accomplishment). I haven’t needed antibiotics since 2000 (bad kidney infection), so I really don’t know what’s happened this year… I’m sure that ‘service will be resumed’ shortly (well, in the New Year)… :smiley:

This is a strange one for me as well because - I had a stinking head cold a while back that moved into my chest with green gunge vengeance and it took an antibiotic to clear it and i went to the minor injury unit of my local hosp this morn with a swollen, inflamed big toe and they sent me off with another antibiotic for an infection plus I’m on tecfidera as well - coincidence - maybe??

Hi Mags, I think you handled yourself really well and did what you thought was right for you at the time. I hope the infection goes soon. I would go back and see my doctor or neurologist about medication, just so you’re concerns are heard. Auds 6

I’m sure I read that they can make you more prone to ‘opportunistic’ infections Redman, though I’m not really sure how that works if our white cell count is ok?

My tooth is ok, but I still have some swelling of the bone above it. I guess the only way I’ll find out is if it flares up when I start the Tec again, and then I’ll know if the infection is still lurking in the bone.

Best of luck with your toe hun. We really do neglect our feet, and don’t realise how much we depend on them.

Thank you Auds. :slight_smile:

I haven’t seen the neuro this year, so I’ll try to get to see him next spring. I did ask nurse about the possibility of going back on Copaxone again for a while, but apparently ‘we’re not doing the 3 times weekly injections yet’.

My usual nurse is unwell, unfortunately, so I’m really hoping she’ll be back soon, as I know she’d have called me and would listen to my reasoning…