Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Start it with an open mind ... it's very possible u may.not have any side effects & only good results.
My doctor took me off of the drug last week as my lymphocyte count was low and i tested positive for the JC virus. Hopefully your dr has told you or will tell you about this? I was pretty upset to be pulled off, but it wasn't worth the risk to me.
back to the drawing board i go!
I do have the JC virus (and for that reason didn't want to start the tysabri) but I'm very much hoping this med wouldn't trigger my immune system to releas it....
Thanks again! ;0)
M
Tecfidera Timeline:
Day 1: This isn't as bad as I thought it was going to be...but I have a tiny headache...hmmm
Day 2: AHHHH I'm itching EVERYWHERE, MY BRAIN IS GOING TO EXPLODE...is it hot in here? Do any of you smell bacon or chlorine? MY HEAD HURTS!
Day 3: Ouchie Ouchie Ouchie! My head really hurts! MAN! OK I'm gonna try and rest....ahhh I can't! OWWWWWW
Day 4: Zzzzzzzzzzzzzzzzzzzzzz OUCH zzzzzzzzzzzzzzzzzzz I'm DYING!
Day 5: zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
Day 6: Yay it's getting better I can totally do this
Day 7: Yeah, I'm totally getting used to the medication!
Day 8: (DOUBLED DOSE) NOOOOOOOOOOOOOOOOOOOO The headache is back! :-/ WITH A VENGEANCE
Day 9: Screw this headache I'm gonna take sleep medicine and try to sleep through it...(wakes up) "IT's EATING THE LINING OF MY STOMACH MY BRAIN IS GOING TO EXPLODE! ZIEKE!!!! (crying for my dog)
Day 10: "Zieke stop barking....are YOU ingesting a biocide in hopes of fighting your chronic brain disease?! NO?! Then stop barking! My head is going to explode from the noise and you're going to have brain matter all over you...is that what you want?!"
Day 13: Nausea and headache (headache bearable after tylenol migraine)
Day 14: vomitting, severe abdominal pain
Day 15: diarrhea started, headache, fever (went down with tylenol)
Day 16: noticed blood in stool, stomach pain was so bad I passed out...went to hospital...came back and slept...didn't take tecfidera that night
Day 17: First ate solid food. Didn't take morning or night...still had diarrhea and severe cramps (like i thought i was gonna die bad cramps at 2am for about an hour) drinking baking soda helped.
Day 18: diarrhea in morning, stopped with immodium, Bad cramping, bad gas. Eating solid food. didn't take tecfidera in am or pm
Day 19 still recoveringno tecfidera today
Day 20 only took one dose of tec today
Day 21 first day of am and pm dose of tecfidera
Day 22: took both doses, started pre-medicating with gavisconhelps a lot. vomitted
Day 23: pain 3 hours after am dose for an hr. was able to sleep fairly well. No vomitting
Day 24: pain in tummy. No diarrhea. Bad acid reflux but pain is bearable
Day 25 (june 4): pain 2 hours after dose for 2 hours
Premedicated @ 6:00am, took tec @ 6:25ampain woke me up @ 8:40 am and is subsiding around 10:20am
Day 26: Got prescriptions for Ativan, Rantidine, and Zofran
Day 27: Premedicating with Rantidine and immodium helps a lotI drink baking soda water when the indigestion hits strong and massage my stomach and apply heat to relieve the pain. When its too much to bear I take Ativan and sleep.
Day 28-40 Pretty much survived doing this same routine, the symptoms started waning, and around day 40 the symptoms were completely gone!
I also had an MRI today, and the results on the brain was no new active lesions! The spine review is still under going the process to determine if there is any new activity there or not.
So, anyhow, so far, things are looking pretty good!!
Sherizi
Thank you ever so much for your kind reply! Hope it would continue working for you!
I will be starting my full dose tomorrow. So far I had been taking the lower dose. And didn't haven't had that many Syde effects. Hope it stays that way.
Thank you again !
Wishing you all the luck and patience ;)
With warmest regards.
Malvina
I really want to stop the shots, but haven't found an alternative yet. For me, Tecfidera was like taking a placebo. I don't qualify for Gilenya, and there are too many bad reviews for Aubagio. At least the Betaseron works for me until a better alternative comes along.
I stopped taking it April of 2014 when I got pregnant with my daughter, started back up in May of 2015. No side effects and same increase in activity. Personally I love the Tecfidera.
Good luck to you!