Tecfidera Routine

[KitOP]

Katie - We are starting paperwork tomorrow to start the Tecfidera.

I really appreciate your posts as you started taking it. You all have listed alot of good tips to get through this.

I've not had a good track record with the DMT's, but I figured I needed to give this a try - it could be "the one" for me and I won't know until I do try it.

I'll keep reading how you all have had success with it!

Thanks again for all of the good info!

[KateM]

KitOp,

I hope the Tecfidera treats you well. I was so apprehensive before I started, I'm surprised I didn't make myself sick. So far (tomorrow marks 3 weeks) I still haven't really suffered anything other then the flushing. That said, I also haven't dared for a moment to take it without food, aspirin and a Zantac. I have zero desire to know if the side effects would be the same or more without that routine.

I have felt a little more energetic since starting but that may very well be from releasing the weight of the stress I had generated over choosing a medication. I was on Avonex before and while I did beg my Neuro to stay on it, I don't miss it a bit. In fact, stopping the Avonex is most likely the reason I physically feel a little more pep in my step.

Good luck to you!

[KateM]

week 4

As far as the Tecfidera side effects go, I have experienced no changes except the flushing isn't every day anymore. More like every other day.

It's so sad reading my last post. I am relapsing again and it is kicking my butt. My Neuro sent me for a thoracic mri, but it only showed the old lesions. She said this one must be in my cervical spine. Kind of a bummer because I already have alot there. She offered IV steroids but I'm going to try to ride it out for now. My walking reminds me a little of the scarecrow in the Wizard of Oz, I'm numb clear up to the waist and my bathroom habits are uncooperative but I'm managing.

Yesterday marked a week from onset, so I'm hopeful that in another week I will be seeing improvement. This is my 5th relapse since April of last year. I will be happy for the tecfidera to kick in soon.

[Myoak]

Hi KateM,

Just wanted you to know how much I appreciate your posts and express my sincere empathy for you as you battle this current flare-up. I am praying for you; having done so this morning before writing.

Hopefully, things will turn around for you soon.

One of the things which comes to mind is one of your meds. After consulting with your doctor I wonder if substituting fluoxetine for Wellbutrin might be worth a try.

Small studies have shown fluoxetine having neurological benefits for MSers. Google "fluoxetine in Multiple Sclerosis" for several articles to choose from or click: http://www.medicalnewstoday.com/articles/106150.php

Blessings to you and your household.

[KateM]

Thank you

Myoak,
Thank you for the prayers, well wishes and the information. I will certainly look up the fluxentine and continue to update.

[JamCakes]

peanut butter

I've been taking tecfidera for I think 9 months now. There was a recent scare with low white blood cell count, but an immediate retest showed everything was normal.

I am glad not to be giving myself shots anymore, but I am somewhat fearful that I will eventually have to stop taking tec. I think it is cooking me from the inside out. I run very hot, flushing 3 or 4times a week. I work in an office and sometimes I flush during meetings or while talking to someone. It's embarrassing, besides being uncomfortable.

I have found what helps is to take the tec at the exact same time everyday, which I usually mess up on the weekends. Also, peanut butter right after helps. My neuro said the fat absorbs the medicine.

I did have rocky stomach for the first month. I took tagamet which helped. I don't have any stomach issues anymore, however I often flush after I eat lunch, so I know there's still something going on there.

Now I have a line of red dots on my arm, and I wonder if the tec has caused capillaries to burst. Still, all this is better than the shots, I was having an increasingly difficult time with those. 8 years of shots, I have painful hard knots on my thighs and nerve damage which I believe was from the shots.

Kate I am sorry you are having a hard time. I hope this flare passes quickly!

[eliden3]

my experience so far with tec

Hi all,
I'm responding to the inquiry about how it's going on tecfidera. It's been 9 1/2 months for me.

The only side effect I have had is flushing. It was worse at first but after a couple of months it started to subside. I found that taking with fat keeps the flushing away most of the time. I take a spoonful of organic peanut butter with it every time. That has reduced the flushing by about 90%.

I'm wondering if it's really the best med for me. I have been getting increasing symptoms since I started taking it. Like more muscle spasms and frequent random sharp pains. I'm also having increased pain in my hands and arms, daily.

I'm going to be getting a 2nd opinion about whether or not I should be trying a different medication like possibly tysabri.
We'll see what they say! Great day to all of you!

[eliden3]

what is LDN?

Hi all,
I am noticing some folks talking about LDN. What is it?

thanks!
good day everyone.....

[Seasha]

eiden - LDN is Low Dose Naltrexone. You can find lots of information here: http://www.msworld.org/forum/showthread.php?t=115804 Knuckle knows quite a lot about it!

[dyin_myelin]

Hi all,
I am noticing some folks talking about LDN. What is it?

thanks!
good day everyone.....

It's this mythic thing that mildly slows MS progression in a few studies, makes you sleep well, improves your mood, is totally safe, and has few side effects plus costs about thirty bucks. Interested? Well, you can't get it unless you go to a pain clinic, "functional" medicine doctor who only takes self-pay/no insurance, or a $170 phone consult by someone who I'm sure is totally credible and willing to script things sight unseen.