Recently diagnosed & unsure what medication to choose

[Cryingbuty]

Hi everyone, I am new here and recently diagnosed with RRMS. My doctor is recommending Copaxone but gave me a rather thick packet of paper to read about all medications( a bit over whelming)
I am a bit scared to do injections and some of the side effects of the copaxone worry me I.e- the heart palpitations and chest pains. I already deal with heart palpitations now.
I have been reading about BG-12.... any input? I like its a pill and side effects seem minimal. My neuro is no big on the new stuff. I really feel dont know where to turn...any help/ideas/input would be GREATLY APPRECIATED!

Thanks all!
Cryingbuty

[Camsue]

Hi Cryingbuty

Welcome...deciding which med is the first difficult decision you must make. I don't have any info to add, just wanted to tell you welcome!

[ru4cats]

I recommend on YouTube the video "The future of MS treatment" by Dr. Vollmer from the MS Center in Colorado. He goes through all the current treatments plus those on the horizon and his recommendations depending on your personal information. I would definitely wait to try any of the brand new ones until more is known. I'm thinking of Tecfidera. Minimal side effects? Have you read the Tec forum? Doesn't sound minimal to me, but that is my personal opinion. I just had my 40th infusion of Tysabri, but I am JC- so my risk is minimal. Good luck!

[Kimba22]

I recommend on YouTube the video "The future of MS treatment" by Dr. Vollmer from the MS Center in Colorado.

Great advice! Just wanted to add that you'll have better luck finding the video if you enter the title "Wellness & Multiple Sclerosis: Why It Matters" into the search bar of YouTube.

Best wishes in your decision!

[ru4cats]

Actually, the video I listed is the most recent, 8 months ago. The 2nd video is a year ago although both present the same information, basically.

[Sarahsue]

Fortunately, when I was diagnosed and medication was suggested, my doctor went over all the medications with me and we decided on one together. He said I didn't have to make a decision right away, but since he was there to answer all my questions, in words I could understand, I decided on Tecfidera (BG-12). The biggest selling points were it is oral and had few side effects. I have been taking it for about 2 months and I haven't had any major issues with it.

My neuro is at a teaching hospital and very up on the most current research out there. If you are concerned about taking the Copaxone, talk to your neuro about taking something else. Check out Tecidera's website. www.tecfidera.com.

I hope this helps! Good luck!

[knuckle]

I've had MS now going on 25 years and have taken most of the drugs. This is what I would do:

I'd take 4.5mg Low Dose Naltrexone one hour before bedtime and 300mg sustained release Alpha Lipoic Acid before breakfast and before dinner.

I would also take the following supplements:

N acetyl glucosamine - about 2-3grams daily
Curcumin - about 1000mg daily
Vitamin D3 - about 5000iu daily
Calcium 2aep - 500mg daily
Magnesium Orotate - 500mg daily

Google each one of these supplements with "multiple sclerosis" for the reasons why.

It is important to note that both Alpha Lipoic Acid, Curcumin are in human trials for MS. ALA for secondary progressive MS and Curcumin for relapsing remitting. Calcium 2aep is used as an MS treatment in Germany.

The research being done on N acetyl glucosamine is especially exciting because it looks like it may even rebuild damaged myelin.

See my "Useful LDN Information" to learn more about that.

The combination of vitamin D, calcium and magnesium was shown years ago in a clinical trial to reduce MS attacks over 50%.

Try this for six-to-nine months and see how you feel before starting on the expensive, often toxic, MS drugs. Maybe you don't need them.

[Cryingbuty]

Thank you

Thank you everybody for the feedback. I will definitely look into the video on YouTube and research the BG 12 a little further. It is a hard decision to make and it's not going to be made over night. I am going to make a appointment with my doc again and take the packet of paper that he gave me about the medications and ask him to please go over them in detail with me so we can make a decision together based on my Situation

[Kimba22]

Actually, the video I listed is the most recent, 8 months ago. The 2nd video is a year ago although both present the same information, basically.

Thanks for the correction! I know it's basically the same info, but I found the most recent video easier to follow. Maybe it's just finally sinking in, who knows.

[onlyairfare]

I am really glad that when I first went to a neurologist about my MS treatment, he said "Take this" and handed me Copaxone samples and a prescription

Nowadays, in the midst of the shock of a diagnosis, you have to read all a bout it, then make your own decision on which med to take. All of them have potentially ad side effects, and none is a cure. Yet.

[MSer102]

I am a bit scared to do injections and some of the side effects of the copaxone worry me I.e- the heart palpitations and chest pains. I already deal with heart palpitations now.

I'm a little surprised that nobody has explained the Copaxone side effects you mentioned. Unfortunately some of the Copaxone literature is a little vague in explaining how that happens.

The chest pain, heart palpitations and trouble breathing don't occur after every shot or as a regular thing. They occur all together in a somewhat rare episode called a immediate post injection reaction (IPIR). It usually doesn't happen very often but when it does it's so scary that it frightens some people off of Copaxone altogether even though Copaxone is the medicine that's thought of as having the fewest side effects.

It's unpredictable who it happens to, when it happens or how often it happens. I never had an IPIR but I talked to a guy who had one every month for the first 5 months he was on Copaxone so he decided to quit because of them.

ALL of the MS medicines can have scary side effects. So for every medicine some people hardly have any and some people get them so bad they have to quit taking it.

Some of the information in the video that was recommended might be a little over your head as a newbie but it's worth watching anyway just to get a feel for what medicines are available and how they're different.

The rule of thumb is that the more effective the medicine is the more side effects they have and the greater the risk of something bad happening. Everybody has to make their own decision about what they're willing to risk to get a benefit. Copaxone has few side effects so that could be why your doctor recommended that one for you to start on. But it's also in the group of injectible medicines that has the lowest effectiveness in preventing relapses and new brain lesions. Some people have had their MS come almost to a standstill on them and other don't seem to get much benefit from them. You don't know how a medicine will work for you until you try it.

[QUOTE]I have been reading about BG-12.... any input? I like its a pill and side effects seem minimal./QUOTE]
BG-12 is now called Tecfidera and the side effects only seem minimal to the people who aren't having them.

Some people aren't having side effects but other people are having a terrible time with nausea, vomiting, stomach pain, abdominal cramps and diarrhea. Some people are having headaches and other aches and pains. There is a forum here at MSWorld about Tecfidera where you can read about the trouble people are having.

In different forums I'm reading complaints from people who feel they were misled by the reports from the clinical trials that the side effects were generally mild. A lot of people are having digestive side effects that are so bad they had to stop taking it.

Remember that ALL of the medicines have side effects. Some people get them and some people don't. Gilenya is known to have effects on the heart so if you are already having anything abnormal going on with your heart - like palpitations - then it isn't a good idea for you to take it.

Good luck in making your choice.

[Rainbow434]

After reading many post I too agree all DMD have some side effect. I am recently DX, less than one year, and have been on Copaxone from the start. No problems at all...some site injection itching. Shared Solutions the support end of TEVA, manufacturers of Copaxone, have been great. I called them many times and they were very helpful. My neurologist and I decided on Copaxone because of the least side effects.
Good luck.

[tmarq23]

Why I started with Tec

I was happy that Neurologist gave me information on all the drugs and allowed me to be part of the decision making process.

From my understanding when taking Tec they will routinely check your white blood cell count, because the drug can lower it. I am only in my first month and won't know blood work results till next week.

The other oral meds they routinely check kidneys (personally I would rather take my chances with blood cell count)

Yes everything has a side effect, what I have experienced so far is mild stomach issue's, no flushing (of course everyone is different).

My one concern was the fatigue I've been feeling and if it had relation to Tec, other then that I personally would rather deal with the mild stomach cramps, lowered white blood cell count, and no injections or kidney issue's.

Good luck with making your choice =)

[ShootingStar63]

I say go for an oral drug. MS is bad enough without thinking about needles. I have been using Tecfidera for two months with no side effects beyond the first couple of days.

[aredmosquito]

After reading about all the oral meds on Google Scholar, I decided they weren't for me. Just how new all the oral meds are and how little is known about them unsettles me. I wanted something that had years and years of data to back it up.

I am still not a fan of needles, but the relatively safe profile of the CRAB drugs (Copaxone, Rebif, Avonex, and Betaseron) is what helped me choose them. During the week long hospital stay that led to my DX, all I did was research medication.

I wrote about my Rebif experience in another post if you want to read it . . . I have had very minimal effects, and the ones I have had were during the first six weeks.