FIRST MRI AFTER BEING ON TECFIDERA

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

FIRST MRI AFTER BEING ON TECFIDERA

Postby Ladymac » Sun Aug 11, 2013 4:59 am

Greetings to all,

I wanted to report some FANTASTIC NEWS. For the FIRST time in 7 years since the official diagnosis, my Annual MRI with and without Contrast showed NO NEW LESIONS !. I am on month #4 of Tecfidera.

My Neuro exam showed 2 more changes, and these are changes in the last 3 months since the last time I saw my MS specialist. Both pupils are now the same size and reacting (one was normal the other totally different size for 7 years+). The other change was I had my right eyelid has been sagging for several years. Also GONE. Both issues with the eyes were there up until March when I saw my Neuro Specialist last, started Tecfidera in April and they are both totally resolved!

I did have a large drop in my lymphocytes, how ever, I am still well within the normal range and we are attributing it to a UTI/Kidney infection and are retesting every 4 weeks to keep track. My Neuro says I am well within the normal range and he won't get concerned until I get to around 500. I am at 900 as of the last test. My next retest is in 2 weeks.

What does all this mean....well, I still have MS, and still have the lesions I had. We will be excited to see next years MRI, he feels we can wait 1 yr because I have a stable MRI. If things change, we will revisit that. In 4 months of being on Tecfidera I have seen some changes in cognition and emotions and being able to filter many things going on at the same time better, but I pretty much am sharp from 6 am in the morning until about 2pm but then I am totally exhausted physically and cognitively and emotionally by about 3pm. For me this is a HUGE improvement, but the physical reconditioning will have some limits, and it is a wait and see. If I do something physically or mentally exhausting, I run out of gas sooner, but I am going to be patient and work on limiting myself and better planning. I am just SOOO EXCITED.

I have not had ANY side effects since the beginning and following the meal and timing of my other meds. I am now able to eat fruits and vegetables without having issues. For someone with severe GERD and Gastric Paresis these are BIG positive changes as well. I have gained weight, about 5 - 7 lbs and am starting an exercise program in the water/pool this week. I have decrepit muscles and don't want to hurt myself, and since I have been feeling better I have gotten myself into trouble by doing too much physically with pain being the results in my back, arms and legs, so a reconditioning program slowly and better planning so I don't set myself back several days or weeks is in order. I live in the deep South so the heat and humidity for anyone with MS can cause problems too, and am working on being better hydrated and keeping my body temperature in check as well.

I have another post on this side called: Not everything is.... The other issues that may have resulted because of MS or not cannot be expected to be effected either way by the new medications, but no one knows, so when something Neurologically changed so dramatically I am very excited for ALL OF US who have MS that there are a lot of things in our lives that can improve.

What a FABULOUS positive change of events. I had already described to everyone that I have been able to not use the cane, my balance is much better now too. I am soooo hopeful and this is the first DMD drug that has made any positive changes, let alone my first stable MRI EVER. Sure, the old lesions are there, but literally I have not had an MRI where there hasn't been at least 1 - 2 more, let alone the Neuro exam with the eyes proving that there has been some wonderful positive changes.

Blessings,
:-D
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby Ash3 » Sun Aug 11, 2013 8:55 am

FANTASTIC!!!!!!!! This is such wonderful news! It gives everyone hope and such positive results. This just made my day. WHOA!!!! I will be talking to you soon. Ash3
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby micheleinva » Sun Aug 11, 2013 7:32 pm

Ladymac,
Congratulations! This is such wonderful news. Thanks for sharing. Whoo-hoo!

Your suggestions for easing stomach issues allowed me to continue taking Tecfidera. I am on week #5 and no longer have the gastro issues, all due to your suggestions. You have helped so many people with your tips and posts. THANK YOU!

So happy for you!

Michele
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby xpsychiatricmd » Mon Aug 12, 2013 8:29 am

Ladymac,
I am very happy for you. Your results on the MRI are encouraging to all of us. I am on my second month, again no stomach problems to speak off. Still, have some issues with the flushing mostly at night. This may represent an interaction with methylphenidate that I take earlier in the day. I hope that my next MRI is as good! I recently had to go to the hospital ( before the Tecfidera) to get steroids, followed by a week stay at Sea Pines. Now I am moving from a wheelchair back to the walker.
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby Ladymac » Mon Aug 12, 2013 10:16 am

Hi there xpsychiatricmd,

Thanks. I take Ritalin in the am as well. 30mg ER LA tabs in the AM. No problems with flushing with me at all. But moving from wheelchair back to walker is FANTASTIC!!!! May we all move forward and realize great gains.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby gramcjk » Sun Aug 25, 2013 4:32 pm

Ladymac;
Gramcjk here. I am so very happy for you. I hope your positive MRI and the positive changes taking Tecfidera have made for you, can inspire all of the people having a hard time ajusting to this new drug. Your insights helped me so very much. Diet and timing seem to be the biggist hurdle people must learn to cross. This appears to me the miracle drug I have been looking for. I have not felt this good in years. Much more heat tolerant, less fatiged, and have actually lost weight. I can afford to, not obese, but can pinch an inch or so :roll: . I hope all of our fellow MS people and their care givers can be inspired and hang in there. Do not give up untill all avenues have been tried and exhausted. We are all on the same roller coaster together. God bless.
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby Ladymac » Tue Aug 27, 2013 6:28 am

Thanks gramcjk! My friends, Family and Church Family have all commented on how much better I am doing. Following behind me by less than a month, there are several other people getting great results as well and I would love others to post their follow-up MRI and Neuro exam results after 3 months of being on the medication. Yes, it is a miracle drug for me. I am very grateful.

Blessings,
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby Tif » Sun Sep 15, 2013 9:44 am

Hi Ladymac, I am so happy for you and your positive results. Thanks for posting.
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby FriscoTxMS » Sun Nov 17, 2013 12:46 pm

What a blessing! I enjoyed reading your post. It sounds like we are very similar.

Was the UTI/kidney infection you had related to starting Tecfidera? (It is very dehydrating.). I have been struggling with those issues for several weeks, but thing are improving. It is just hard to tell if my bladder hurts, or. If it is ab pain.

I appreciate your posting and any input you may give.
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby msmything » Sat Dec 28, 2013 9:12 pm

Hi Ladymac,

I haven't been to this site for many many months following a downturn in just about every aspect of life.

I started Tecfidera yesterday..and came to see what the word was here..lots of smart folks and good info.

Your posting is infectiously positive!!!!! I'm psyched right now, it's 10pm cst and I'm feeling like garbage from side effects so it was good to read.

I hope to be able to convey such a positive outcome in the weeks to come.

Best to you,

Colleen
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby KDGO » Tue May 27, 2014 3:22 pm

Ladymac
What was your WBC before starting? Mine was already on the low side at 4, neuro said to monthly test to make sure it doesn't go below 2.5
Thanks
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby bobolynn2 » Sun Aug 31, 2014 12:25 pm

Thanks Ladymac for all the information. I'm starting Tecfidera in the next several weeks and appreciate your suggestions. There are scary posts regarding Tecfidera, but your suggestions seem to have common sense info to work around stomach distress. I'll keep you posted.
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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby Froggie » Sun Aug 31, 2014 7:37 pm

Hi Ladymac-

Fantastic news on the Tecfidera!!! I have been on it for over a year now and am having an MRI done for my next neuro apt in September. That will tell the tale, but your experiences are very encouraging. I too am one of the lucky ones with no side affects. I feel better overall than on the Rebif and I delight in no longer being a human pincushion. The only times I experience intestinal issues is when I don't eat anything in the evening, I get terrible diarrhea the next day. You would think after a year I'd have figured it out, but sometimes I forget.

I will keep you all posted as to my MRI results, but this is heartening. I don't ever want to deal with needles again!

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Re: FIRST MRI AFTER BEING ON TECFIDERA

Postby shabnam » Mon Sep 01, 2014 5:43 am

congratulation for your fantastic improvements .I am so happy to hear these news.
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