Should I try or does it even matter at this point

[LilStep]

I was recently told by my neuro that I am now Secondary Relapsing
Remitting. I am currently on Copax and have previously been on Tysabri and Rebif, and I couldn't tolerate either.

So my neuro is suggesting I give Gilenya a try. I don't want to progress any further, but I thought that once you left RRMS stage that there wasn't really any treatment that is going to help.

I don't know what to do. I'm scared to try Gilenya but am willing to give it a try if it will help.

Any advice?

[newbie but goodie]

I dont fully understand why they dont recommend DMDs for secondary progressive: it is that they are ineffective for SPMS or there is just not enough data? Either way, why not take the meds? If there is a chance they can help and you can tolerate them- it may be well worth it.

It's totally a personal choice though

[JerryD]

I believe the answer lies in the fact that there is little or no FDA study on the 'progressive' forms of the disease. Do you watch the clinicaltrials.org site. There hasn't been a trial including progressive forms since I started monitoring rhe site, 3 years ago.
I don't believe I am going to wait for the medical world to worry about my form, PPMS. I am doing the diet and supplement thing. Good luck on your journey...

[Myoak]

Hi folks. LilStep, Newbie, and Jerry you all have legit points.

ABSOLUTELY, IT DOES MATTER that you try and what you try! The link below is helpful in identifying trials in SP and PPMS. Not many, but there are some. Be sure to click and read “potential therapies in the pipeline for MS”.
http://www.nationalmssociety.org/res...ome/index.aspx then click
potential therapies in the pipeline for MS (.pdf)be sure to open the pdf.

LilStep, Gilenya is being used in a trial for PPMS involving about 640 patients. Maybe that is why your neuro thought it should be considered. Newbie has a good thought, if there is a chance and you can tolerate them, maybe one of these drugs will help. If not, Jerry is doing diet and supplements. An excellent choice, IMO. Please consider that many people have had success through diet w/o drugs.

There are a few MS diets out there and an excellent resource (Tara) at this site. Dr. Terry Wahls ( an MSer who has success on her own MS diet) suggests a two week experiment. Basically, for the sake of your life, could you totally cut out 3 major components, dairy, sugar, and gluten to see how you feel? I am not giving you that suggestion. I am making the suggestion that you investigate MS diets and understand what kind of effort may be necessary to find out how your body reacts. Be sure any particular diet is safe for you personally.

Neuros typically deal only with FDA approved treatments so don’t be surprised if you are discouraged from trying alternatives. But if existing drug therapies have not helped why not look into alternatives, as Jerry did and formulate a plan? Hell yes, your life is worth fighting for. You will discover lots of other MSers in this fight.

Newbie, neuros normally are not going to rec any drug for SPMS if it doesn’t have FDA approval for SPMS. Nor will insurers pay for it. So, not much available at the moment for SPMS or PPMS. JMHO, but that will change. There is a lot of money to be made in bringing a patented med to market so something will be coming. Maybe a couple of years.

Jerry is right. Why wait? If nothing is working investigate alternatives like diet, Low Dose Naltrexone, or OTC supplements like Acetyl-L-carnitine and alpha lipoic acid (which appear to be mitochondrial antioxidants and Nrf2 activators see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070183/ ). Probably, very few are interested in this kind of boring study. But I was entranced and post it because someone else might be.

One thing I found fascinating in the above study is that BG-12 (dimethyl fumarate) has similar mechanisms to the two OTC supplements mentioned above. But before rushing out to buy them at the vitamin shop please note that you would not necessarily know how many mg to take to achieve a therapeutic value! Nor have they been proven in extensive trials! With BG-12, it has been through trials at 240 mg twice a day and I believe Biogen’s application was for FDA approval in that amount. BG-12 will probably be priced similar to Tysabri and Gilenya at about $40,000 per year to recover trial costs and make profits.

Likely, there will never be a trial for the acetyl-L-carnitine, alpha lipoic acid, or other OTC compounds because there is no money to be made from common substances a drug company cannot patent, especially something you can buy for $20 a bottle. But there is one doctor in Las Cruces NM who uses lipoic acid and LDN to treat MS patients and probably, there are other doctors who do, also.

I would think that any MSer who didn’t have insurance would be looking into possibilities which may be as effective as currently approved meds, have less side effects, and are affordable.

LilStep, there is more out there than you ever dreamed! Keep the faith. Live Strong, Live Long. Seek and ye shall find!