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I am a 54 year old female with RRMS. I was dx'd in 2000 but had MS for about 6 years before that. I didn't use any meds until the BG12 trial which I started in January of 2008 for me so I have been on the correct dose since the start. It was measured against a higher dose, placebo and copaxone.

Since it received FDA approval today, I can now gladly answer any questions that anyone might have.

Hi MBLG, this is Avinash here. I had been diagnosed with RRMS some 6 months ago. I had not started any medications yet, and had to in a short while. Give me your opinion what are its benefits above Avonex. What are ur MS lesions status after BG12 trial? Since I am M 25 by age, this info will be of great help for my future. Also what are side effects of BG 12?

MBLG wrote:I am a 54 year old female with RRMS. I was dx'd in 2000 but had MS for about 6 years before that. I didn't use any meds until the BG12 trial which I started in January of 2008 for me so I have been on the correct dose since the start. It was measured against a higher dose, placebo and copaxone.

Since it received FDA approval today, I can now gladly answer any questions that anyone might have.

Welcome to ThisIsMS. I'm certain that many folks here will have questions about BG12.

Here are a couple to get started...

How has it affected your MS, e.g., MRI as well as clinical symptoms? Have you stabilized or actually improved? If you've experienced improvements in your MS symptoms, then it would be great if you could elaborate on those improvements.

What side effects have you experienced and how did you deal with them?

BG12 has been reported to cause chronic depletion of glutathione. http://www.thisisms.com/forum/chronic-c ... ml#p197021 Have you ever had your levels tested? Was this a concern during the trial? Were any of your side effects attributable to reduced glutathione levels?

BG12 is known to reduce white blood cell counts. Have you had any problems with this, e.g., increased infections, etc?

Thanks, NHE

avinash88 wrote:Hi MBLG, this is Avinash here. I had been diagnosed with RRMS some 6 months ago. I had not started any medications yet, and had to in a short while. Give me your opinion what are its benefits above Avonex. What are ur MS lesions status after BG12 trial? Since I am M 25 by age, this info will be of great help for my future. Also what are side effects of BG 12?

Hi Avinash,

I will answer your questions based solely on my views. I don't care for needles so seeking a treatment with needles was not a strong option but after 5 years on this trial with it's bi-monthly blood tests and my need for monthly B-12 shots, I have gotten over the needle fear.

That being said, I preferred not to do Avonex or Betaseron, or even Rebif, because of the flu-like side effects. My work was the reason since I worked almost everyday.

My reason for starting BG12 was that in 2007, I had new lessions for the first time and a weakening on my right side. I will say I got scared since I was total mobile until then and still am. Since on BG12 I have had no new lessions but I also haven't had an MRI in 3 years or since 2010 so that answer is not totally possible. The trial I am on does not call for MRI's. I believe one of their trials does have MRI's. My results are based on various eye tests, exams, cognitive tests and labs. The first two years they did EKG's.

The side effects will differ for each person and for me it was skin flushing, itching, dry mouth, lower digestive issues and a runny nose that was not mucous, but very watery. The side effects started about 3-4 hours after taking the pills which is how I knew I had live product from the start. I also did not get any side effects after the "lunch" dose which made me realize I was on the twice a day dosage instead of the higher dose. The side effects for me, lasted about 5 months. The only labs of mine that were red flagged was the last one in March where my calcium and potassium levels were up so I will be redoing the labs next week. I did start a calcium supplement six months ago since I am menopausal so that could be it.

I hope this helps.

Hi MBLG,

I just wanted to thank you for jumping on board and sharing your BG12 experience as soon as you were able to do so. Information like this is invaluable to pwms. You're my hero of the day.

I hope things continue to go well for you.

MBLG wrote:My reason for starting BG12 was that in 2007, I had new lessions for the first time and a weakening on my right side. I will say I got scared since I was total mobile until then and still am.

Did you note any improvements or reversal of symptoms?

Anonymoose wrote:Hi MBLG,

I just wanted to thank you for jumping on board and sharing your BG12 experience as soon as you were able to do so. Information like this is invaluable to pwms. You're my hero of the day.

I hope things continue to go well for you.

My pleasure...we are all in this together!!!

BG12 has been reported to cause chronic depletion of glutathione. http://www.thisisms.com/forum/chronic-c ... ml#p197021 Have you ever had your levels tested? Was this a concern during the trial? Were any of your side effects attributable to reduced glutathione levels?

BG12 is known to reduce white blood cell counts. Have you had any problems with this, e.g., increased infections, etc?

Thanks, NHE

Dear NHE,

I do not know my levels of glutathione and how they've been affected by the BG12 but I will ask next week when I see my neuro.

I have no infections in the last five years except a sinus infection this past January as a result of the flu that by husband brought back from a business trip. Not the present I hoped for from NYC...LOL!

MB

You are great. thanks for information about tecfidera due I have been on it almost a month and have experienced every side effect but still sticking with it. avonex user for past 6 years so pills are better than shots only have 6 lesions will due blood work after 8 weeks on the tecfidera and we shall see. hopefully everything will subside but fatigue has set in and hot as you know where I live also feel weakness maybe from raising teenagers.Ha Ha just a wait and see game.

I am on my 2nd week of the full dose and starting 4 days ago I noticed the side effects taking over. 3-4 hrs after I take the med I get horrible upper abdomen cramping followed by nausea and diarhea. This usually lasts about an hour but its the worst hour that I have to go through.
Did you have any of these effects and how did you handle them? Any kind of tip would be great.

I have every side effect since starting Tecfidera on May 15, however I really like to know a ballpark time frame of when they will cease. I have recently noticed almost to the 2 hour mark I start feeling dizzy,limbs wobbly and stomach uncomfortable. I do the food regiment etc. but this is annoying and ready for things to settle down. Any suggestions would be great because obviously I am not a patient person and I am also a stewer and brewer and lasltly I have a busy life and it is disrupting it. Ok I feel better now,so any suggestions would be great. Thanks Ash3

Hi,
I am new to this site and new to Tecfidera. I am on my 5th day of the beginning dose. I have had the flushing, itching, burning rash on my arms, back of my neck and ears. I have had diarrhea. At this point, I still feel the burning, and flushing, but there is no evidence of redness!? At first, I took it on an empty stomach, and now I am eating a full breakfast, taking benadryl, then taking the Tecfidera.
To tell you the truth, I am scared to start higher dose! I have read these posts, and other side effects, and I am terrified of waking in the middle of the night with what some of these people are describing!
I know it may not happen to me, and I get annoyed at my husband who reads every pamphlett that comes with his meds, for their side effects, so he can be prepared! I am not one that does this! And I am surprised at my fearfulness!
However, the stomach cramps sound incredibly painful!

My background; I am a 59 year old female. I was diagnosed with MS in May of 2000. Never had been ill before! I hadn't been a person that suffered for years with symptoms and didn't know what was wrong! One day I was fine, and the next day I couldn't walk! I started Betaseron and have been on it for 13 years until 5 days ago!
The reason I am on Tecfidera is I was tired of giving myself shots! I had, had enough! I was ready for a change!
This new drug was the best and safest for ME. I would love to be the perfect candidate for this drug and be able to say that the only side effect I had are mentioned above!!!! Time will tell!
Thanks for letting me vent,
Opie

Hi Opie,

Please check out a TOPIC on this Board that I started on suggestions that is working for many of us as you will see. The timing of the medication and your diet might help minimize the side effects. See Below:

http://www.thisisms.com/forum/tecfidera ... 22462.html

It is difficult to assess things reading different boards on the internet, because so many people do well and we don't see many posts about it. There are some side effects to everything, and some might be something else that is going on, not the medication.

The big thing is to stay positive and to not get worried that things may or may not happen with side effects based on reading things online. The best source of information and questions can be answered on the National MS Website or for this particular medication, if you haven't already, you can sign up to get information from MS ACTIVE SOURCE which is a Website for TECFIDERA patients for information and there are 24 hour a day nurses available for you to call. Go to http://www.tecfidera.com. I am not a doctor, I am an MS patient just like you and it is difficult weeding through all the different things that are said out there on the internet on anything. Assuming you have a MS Neurologist who is a Specialist in MS at an MS Center, they should be also able to give you sound advice as well.

You can PM me if you want, I can tell you a lot of us have been through the same course of shots and medications like you and there are some great people on this website who can emphathize with you.

Good Luck, and stick with it. It is amazing the difference in taking the pill versus the shots for me and the difference in how I feel now is amazing.

Blessings and Good Health,

"The best source of information and questions can be answered on the National MS Website ."
Sorry, but that isn't true. The following report isn't mine, but I agree with it.
Why discourage people from informing themselves?

"What has changed? Taken from the CCSVI and CCVBP thread. NZer1 July 19, 2013

20 July 2013 at 06:24
In the four years since this page was started, there have been many profound changes in mainstream MS treatment and research. The connection to the vascular system is real for many, and is being dealt with in a "sideways" manner by neurologists. I do not expect we will hear that CCSVI is valid from neurology--they will attempt to rename it, requantify slowed venous return, and make it their own. And they will create drugs to modify it. link

But the facts remain:

1. People with MS have less cerebral blood flow than normal people. Their blood flow exits the brain at a slower rate. Researchers are looking at drug therapies to address this fact, but it is no longer an item of debate. Hypoperfusion is real, and it damages the brain. Whether it is a cause or effect of MS will be debated for decades.
link

2. People with MS do better with exposure to UV rays. It relieves symptoms in many. It is thought this might be due to vitamin D levels, but it might also be due to how UV rays release nitric oxide and change the endothelium and blood flow.
link

3. People with MS are being advised to look into their nutrition and to eat more fruits, vegetables and whole foods and less animal fats and processed foods. When Dr. Swank suggested this 60 years ago, it was called "junk science." It is now given as helpful advice by the NMSS and the AAN. Same thing with exercise. Only a decade ago, pwMS were told to not exert themselves. Now we know that physical exercise and activity delays progression. Same thing with smoking cessation, stress reduction, and better sleep. All of these cardiovascular lifestyle changes can make a difference.
link

4. Oxidative stress and inflammation are recognized as driving forces in MS progression. This has lead to exploratons of new modalities of treatment, like the Nrf2 pathway.
link

5. Gray matter health has been recognized as a more accurate biomarker of MS progression than white matter lesions. Gray matter atrophy will become the new target for MS therapies.
link

6. PwMS have much higher levels of fibrin and endothelin-1 in their serum than normals. These are markers of endothelial dysfunction.
link

7. Upright MRI has allowed us to see how cerebrospinal fluid and blood return to the heart is slowed and impeded in pwMS.
link

8. CCSVI is being explored around the globe. There are literally hundreds of papers published in vascular and neurological journals. New papers come to press every day. Not many utilize Dr. Zamboni's diagnostic protocol, but those that do are finding CCSVI in pwMS.
link


All of this is new. And it has happened in just the past four years.

+++++++++++++++++++++++++++++

For those of us waiting for venoplasty to be accepted as an MS treatment, we have to step back and view the other changes that have happened in MS care.

The American Academy of Neurologists has several papers featured on their page which connect slowed blood flow and neurodegenerative disease. They have a patient outreach branch--The American Brain Foundation-- and they have a yearly Brain Fair to discuss diet and lifestyle changes people with neurodegenerative diseases, including MS, should consider. So much for Dr. Swank's junk science.

But most importantly, all of our lives have changed. For those who did not receive lasting benefit from venoplasty to address CCSVI--many have moved on to look at other therapies and modalities for treatment of their disease. For those who have done well with this vascular approach, life has gone on.

I'm in that fortunate position now. Jeff is doing quite well-- he is working, up and active, with no further MS progression. His gray matter atrophy is gone. Our son is off to college, and we find ourselves in a new phase of life. I've curtailed my online and advocacy time to rediscover my career, my other pursuits, friendships, travel, and to be present in my own life.

When reporters, scientists, neurologists, MS specialists and others say--"Oh, the connection of CCSVI to MS, that's simply junk science"---tell them about Dr. Roy Swank. Remember how long it took his observations of "capillary fragility", slowed blood flow, and hypercoagulation to be accepted as part of MS. He was noting endothelial dysfunction decades before scientists knew about nitric oxide and how environmental factors contributed to blood flow. And he has never once been credited by mainstream neurology. You won't see his name or read his research in their journals. But he was right.

++++++++++++++++++++++++++++++

Here's a wonderful video Christopher A. found on Dr. Swank's work. It was made in 1989 as part of a Canadian news investigation into the success of Dr. Swank's diet in pwMS. If you haven't seen it, it's a must watch. Because today, 25 years later, the NMSS is making these very same dietary and lifestyle recomendations to pwMS.



Dr. Zamboni's discovery of CCSVI is in the same category. He has revolutionized how we look at cerebral blood flow, by studying the under-researched extracranial venous system. He is decades ahead of his time. His discovery of CCSVI may be the other part of the equation on slowed venous return and endothelial dysfunction in pwMS. To say that it is junk science, and that there is no connection in venous return in MS, is to negate scientific fact.

Joan
[/quote]

Vesta,

Again, here in the US we look at things differently and you and I have already been through the fact that the NATIONAL MS SOCIETY combined with several European Countries are still investigating and paying for research regarding the CCSVI. A new person to MS gets overwhelmed with ideas and theories and they need to stick with the program that they have agreed to do with their MS Neuro Specialist.

If these things make you feel better, great for you, but it is irresponsible to not help a newbie FILTER all the well-meaning and unsubstantiated advice.

You automatically discredit yourself every time you go down this path, and this is the worst path yet with your attempt to discredit the National MS Society here in the USA. The FDA has issued a warning against the CCSVI treatment you are touting and several of the European and Canadian Studies are reporting that Dr. Zamboni's claims have issues.

This Newbie is on the new Medication and it is working for thousands of people which I am one of them.