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  #1  
Old 03-04-2012, 03:32 PM
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Sunshyne Sunshyne is offline
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BG 12 - side effects??

Has any one participated in any of the BG 12 trials?

I'd like to know your experiences with the side effects.

We've all read about the flushing and gastrointestinal effects...are they manageable???

I take it they could be a deal-breaker for some of us.

Thanks
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  #2  
Old 03-09-2012, 09:57 PM
ckfazz ckfazz is offline
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I've been on the clinical trial for a little over two years now. I can honestly say the only side effects that I have had, and they are not always constant, is the flushing and sometimes a headache/migraine. I am now on the 5 year extension and have been taking 2 pills three times per day which was the same as the original 2 years in the trial. The side effects are nothing more than annoying and even that is a stretch. The flushing only lasts for about 30 minutes or so if that but you do get very hot when the flushing comes. As far as the GI issues, I have not had any issues with this at all. I hope that helps but please feel free to ask any questions.
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  #3  
Old 03-10-2012, 08:44 AM
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MiSunderstood MiSunderstood is offline
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Hi ckfazz! Thanks for posting! May I ask how you were feeling before the trial, i.e. specific symptoms and how you have been feeling since going on BG12? Any Noticeable improvements? Have they done comparative MRIs?

It sounds like, for you, the benefits perhaps outweigh the side effects. Is the flushing immediately after taking the meds or can it happen any time?

Sorry for all the questions, but I'm very excited and curious about this drug
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  #4  
Old 03-10-2012, 07:17 PM
newbie but goodie newbie but goodie is offline
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I am super-excited to hear anything you can share about BG12! I am eagerly awaiting its approval and release (along with many others, Im sure!). What was your MS Like prior to thr trial? What other DMDs, if any, had you tried? DO you plan to stick with BG after the trial is over? Have you had relapses? Less than before?
Im sorry for the onslaught of questions, but I have been dying to find a trial participant that I could get some info from.
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  #5  
Old 03-15-2012, 07:55 PM
ckfazz ckfazz is offline
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MiSunderstood & Newbie but Goodie,

No problem with all the questions at all, we are here for each other. I was diagnosed with RRMS back in '07 and have had a few flares but nothing extreme. I originally started on Copaxone but I wasnt fond of takign a shot every single day so after about 5 months I switched to Avonex. I was on Avonex until 2009 but lost my insurance so I did not take any DMD's until I went onto the trial.

Before I started taking BG12, I was fatigued quite often, would have pain behind my eye about 2-3x per week (from the optic neuritis), would have the pins and needles feeling iin various parts of my body and seemed to be moody and forgetful. Since taking the BG12, I am very rarely fatigued, have resumed going to the gym a few times per week and have infrequent migraines/eye pain and almost never have the pins and needles. I feel that my energy has increased quite a bit and have been told by many people that if they did not know I had MS that they would never now. Now mind you, I have RRMS and have been extremely lucky in that I did not have symptoms very often ( once a month or so) but I honestly think this is the drug we have been waiting for.

Unfortunately, the trial I am on only does EKG's and not MRI's so I cannot tell you anything about my lessions. However, I really think that they have either stopped enhancing or have begun to reverse based on the way that I feel. Knock on wood, I have not had a single relapse since being on BG12 and I went through a nasty divorce while taking it which should have sent me into a wicked flare from the stress.

The only side effect that I have had is an occasional headache (not sure if this is from the drug or just the same from before) and the flushing. The flushing does not occur every time I take the drug but when it does happen, it is usually about 1 1/2 hours or so after I take the pills. I currently take 2 pills three times per day. I was told that once the drug goes public, it will be prescribed at 2 pills 2x per day which will make it easier

Please ask any other questions that you might have as I would love to answer them for you
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  #6  
Old 03-16-2012, 08:29 AM
newbie but goodie newbie but goodie is offline
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Wow, it sounds like you are doing really well. That's great to hear! Thank you for sharing your experiences.

How has your ON been affected? I know you said the pain has lessened significantly, but have you regained any vision? I had a severe episode of ON in Sept and havent regained any of my vision, even after IV steroids and 2 months on Copaxone. It had stopped hurting like the dickens for a while but this week it's back to it's old tricks

The ON is the part of MS that scares me the most so I am desperate to find a way to improve my vision and prevent more vision loss.
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  #7  
Old 03-16-2012, 08:12 PM
ckfazz ckfazz is offline
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The only time I really have any issues with my ON now is if I over exert (sp?) myself and overheat. If I push myself to far and my blood pressure/heart rate gets high, my eye goes blurry and has some pain behind it but NOTHING like the "normal" pain from ON nor loss of vision. I do get the pain every now and again but no where near the frequency or severity that I used to. Maybe once a month or so if that

Unfortunately, I dont think that the copaxone is going to do anything for the ON since it does not repair any of the damage from MS, only helps to try and slow down/prevent/lessen new flares. This is just my opinion though and may not be correct.
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  #8  
Old 03-17-2012, 09:08 AM
Jcs Jcs is offline
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Smile Excited!!!

ckfazz thank you so much for your input on BG12. My skin is starting to show signs of needing to stop the shots. Otherwise Beta has been very good to me. Thought about Gil but it scares me! My nero says it will be about 1 1/2 years for BG12 to be released.

Were the starting the pill anything like the hoops needed to go thru with Gil? How often for return check-ups?

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  #9  
Old 03-17-2012, 11:03 AM
ckfazz ckfazz is offline
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I actually started the trials for BG12 a little over two years ago and didnt know about G back then. After reading up on it, I am so glad that I never tried it and never knew about it. There seems to be way too many side effects to be comfortable with and too many risks associated with it.

When I originally enrolled in the BG12 study, I had to undergo an MRI, EKG, typical MS tests for cog/memory/function/mobility etc... but NOTHING like the things to be on G.

For the 2 year initial study, I had to go once a month for blood work and every 3 months for a full work up of testing. The one month visit took about 30 minutes or so and the three month visit took about 4 hours to complete the testing. Now that I am on the extension, the first 6 months are monthly visits and then every 3 months
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  #10  
Old 03-17-2012, 12:31 PM
ru4cats ru4cats is offline
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Jcs,
Many believe BG-12 will be out before the year's end. It was submitted to the FDA for approval several weeks ago, and most figure it will sail through with no problems. With luck, it could be September, if not earlier. The data submitted supporting approval was far greater than required. Here's hoping!
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  #11  
Old 03-17-2012, 01:54 PM
REG53 REG53 is online now
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ckfazz- Thank you for telling us about your experience with bg-12. I am also very interested in this drug.
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  #12  
Old 03-18-2012, 09:57 AM
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In Europe, BG12 is the same drug compound as "Fumaderm" which is sold to people with bad cases of Psoriasis. Fumaderm is made by a Swiss company named Fumapharma AG. Biogen bought the rights to sell Fumaderm as an MS drug.

Fumaderm is Dimethyl Fumarate, or Fumaric Acid Esters, which are derived from Fumaric Acid, which is made by the cells in our bodies when exposed to sunlight. It is believed there is some type of defect in Psoriasis sufferers in that they don't produce Fumaric Acid easily.

Fumaric Acid has long been used as a Psoriasis treatment by dermatologists and the side-effects are pretty much the same as BG12.

Dimethyl Fumarate is also being explored as a treatment for other autoimmune diseases besides MS and Psoriasis, like Lupus.

Malic Acid is a pre-cursor to Fumaric Acid in the Citric Acid Cycle. If you take too much Malic Acid you get similiar side effects to Fumaric Acid and BG12 (flushing, gastro pain, etc.)

Malic Acid has been shown to reduce fatigue and pain in Fibromyalgia and Chronic Fatigue Syndrome patients.

Malic Acid is found in fruits, especially apples. Apples have long been known as good for your skin and oral health. Toothpaste and cosmetics often contain Malic Acid.

Apple Cider Vinegar is a home remedy for Psoriasis, as well as other autoimmune diseases, including MS.

So, while you wait for BG12, you may want to consider taking Malic Acid a couple times a day as it looks like it will help with MS symptoms and progression like BG12 without the potentially harsher side effects.

The other question is why does BG12, Fumaric Acid, Dimethyl Fumarate, Malic Acid, work the way it does for autoimmune diseases?

It seems that they are critical to producing energy in the form of Endorphins. Endorphins are hormones that besides reducing pain and increasing pleasure, are known to regulate T-cell activity in the immune system. In MS there seems to be a T-cell imbalance where our myelin is getting attacked. Two ways to get Endorphins are from direct sunlight and exercise - both usually recommended by neurologists for MSers.

MS, Psoriasis, other autoimmune diseases, are most often found in regions of the world where people either don't get much direct sunshine on their skin or have a diet lacking in vitamin D.

Spices also seem to exert a protective effect on MS as demonstrated by the current research being done on Curcumin, Cinnamon and Saffron. People who live in parts of the world where they eat a lot of spices have very low rates of autoimmune disease. They also typically eat lower fat diets and get more direct sunlight on their skin.

I wouldn't be surprised if they ate more fruits which contain Malic Acid.

Endorphins also explain why Low Dose Naltrexone (LDN) works well for MS as well as other autoimmune diseases, like Psoriasis. LDN causes over-production of endorphins by the pituitary gland by 2-300% the day after you take it and most people with MS who take LDN experience reduced fatigue and pain.

It all seems to come down to that endorphins play an essential role in protecting the human body from disease and aging.
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  #13  
Old 03-19-2012, 02:05 PM
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Syl Syl is offline
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I am in limbo waiting for BG12 after stopping tysabri in Dec this past year. My neuro is very excited about BG12 and feels it is going to be very good for me. I was doing well with tysabri but tested positive for the JC virus and had taken 46 infusions. We decided it was time to stop. It's good to hear from someone who has taken this drug firsthand and hear good results.
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  #14  
Old 03-19-2012, 02:50 PM
rdmc rdmc is online now
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Quote:
Originally Posted by ckfazz View Post
I actually started the trials for BG12 a little over two years ago and didnt know about G back then. After reading up on it, I am so glad that I never tried it and never knew about it. There seems to be way too many side effects to be comfortable with and too many risks associated with it.

When I originally enrolled in the BG12 study, I had to undergo an MRI, EKG, typical MS tests for cog/memory/function/mobility etc... but NOTHING like the things to be on G.

For the 2 year initial study, I had to go once a month for blood work and every 3 months for a full work up of testing. The one month visit took about 30 minutes or so and the three month visit took about 4 hours to complete the testing. Now that I am on the extension, the first 6 months are monthly visits and then every 3 months
Just curious since I'm in Florida too...was your neuro involved in the trial or was it through some university...I see you're in Clearwater, wondering if USF conducted it?
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  #15  
Old 03-19-2012, 04:48 PM
ckfazz ckfazz is offline
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No, my neuro was not involved with the clinicals and actually was kind of a moron. I did and do go to USF for the clinical trials and love the staff there as well as my neuros! When the trial and extension is over, I will continue to see them because I am so comfortable with them and they actually care about their patients
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