Cautiously Considering Stopping DMDs- thoughts?

[mscubed]

Okie doke,

So, I have tried many DMDs, and all of my relapses have been while taking these dumb, scary, toxic drugs. After 2 years being diagnosed, I am already at a 6 on the EDSS scale.

Yet, getting mentally prepared to kick Tecfidera, I know my doctor will not approve. He was very frustrated that I didn't want to go on an 'interim dmd' for two months, and let me know that he wasn't happy about my decision. Also, telling family has proven to be very difficult as well, as they equate it with "not trying hard enough to be Well," inferring that I'm "giving up on myself."

That said, has anyone had positive experiences being DMD-free? I'm considering a combination of Altered-Paleo (Or Swank, haven't landed on that decision yet), as well as my daily regimen of pain pills, seizure meds, and medical marijuana.

I would love some feedback.

Cheers and all the best in your individual MS paths!

MScubed

[tracibk]

I am sorry that I can't give you some advice about being dmd free (I am on Tec and Rebif before that) but I know there are people on the board that are. Just wanted to wish you the best with whatever you choose!

[MSer102]

If you believe your quality of life is worse on the DMD's than it is from MS by itself then I think it makes sense for you to not take one.

There are people who have had good experiences without a DMD but its because their own "flavor" of MS allows them to not be on one. There are also people who have posted in forums that thought they could get by without a DMD and then they had a terrible relapse that left them with permanent deficits and they went back on one. And there are people who have been on every medication available and still developed disability even though they did everything "right".

With MS you just never know. Everybody's MS is a little bit different so you not only don't know what's going to happen until you do it, you also can't base your choices on what other people do because your own MS doesn't care what other people do.

So I think you should do what makes you the happiest based on the best information you have available and how much at peace you will be if the decision you make doesn't turn out the way you hoped it would. Are you willing to be miserable on a DMD if it gives you a chance of not getting worse with your disability? Or would you rather just let nature take its course and be OK with not having to deal with the side effects? Either way is OK if you are satisfied with your choice.

Its not a surprise that your doctor won't approve of you not being on a DMD. Your doc wants the best for you based on what the best medical information says and that is to be on a DMD. That's his job. But he doesn't live in your body and can't make the same trade offs you have to make based on who you are and what your life is like. So maybe if you explain it to him that way he'll agree to still be your doctor and monitor your MS and help you with symptom medicines and referrals to other specialists if you need them.

And I think that whatever your family says doesn't really matter. I think that people share way too much about their MS with their friends and families who aren't in a position to understand anyway. It might be best to say that the medicines make you sicker than MS does and then refuse to talk about it anymore because you can never make them understand and it's really no one's business but your own. To thine own self be true.

[mscubed]

And I think that whatever your family says doesn't really matter. I think that people share way too much about their MS with their friends and families who aren't in a position to understand anyway. It might be best to say that the medicines make you sicker than MS does and then refuse to talk about it anymore because you can never make them understand and it's really no one's business but your own. To thine own self be true. [/QUOTE]

Thank you. I think I needed to hear this, especially tonight.

[KatieAgain]

I am having an exceptionally hard time with the DMDs too. I did not take any for the first 10 years, because my MS Progression was relatively benign. Since then, that has changed.

I have taken 3 drugs and had two allergic reactions and one very serious side effect. All which had to be reported to the FDA. I am still recovering from one of the allergic reactions.

As I reported in another post, sometimes the drug is worse than the disease. I too am on the fence. I have not had any new lesions in years, but the ones I do have started getting larger and I am progressing. Had I not had a recent flare, I would have sworn I was in SPMS.

Good luck on your decision. I know it's hard.

[mscubed]

I am having an exceptionally hard time with the DMDs too. I did not take any for the first 10 years, because my MS Progression was relatively benign. Since then, that has changed.

I have taken 3 drugs and had two allergic reactions and one very serious side effect. All which had to be reported to the FDA. I am still recovering from one of the allergic reactions.

As I reported in another post, sometimes the drug is worse than the disease. I too am on the fence. I have not had any new lesions in years, but the ones I do have started getting larger and I am progressing. Had I not had a recent flare, I would have sworn I was in SPMS.

Good luck on your decision. I know it's hard.

Right? Well first of all, I'm sorry to hear about all your troubles. I haven't had a flare in a long time, yet I keep getting worse. Markedly last night, in fact. I'm starting to believe, given how much I've declined in only two years, whether I had it for a while and may be in SPMS mode. :P

I think the hardest part about choosing not to use a DMD is (for me, at least) the suggestion that by doing that, you are not fighting. And because I am fighting so hard in many other ways, I don't know why these drugs, that are so dangerous, (btw, all the relapses I've had were while I was ON either Avonex, tysabri)(and badaboom, last night while on tecfidera)... are considered so freakin' sacred when they do little and their side effects are so bad (at least were, for me)(allergic reaction and lung infection on tysabri)... In the past two weeks, my swallowing mechanisms have malfunctioned, along with urinary control and numbness between my waist and knees. Also, I think that, for instance in my case, if I am going to be predisposed to aspirated pneumonia from now on, "do I really want to be immuno-compromised, for that?" No!

Anyway, I'm starting to think that diet and naturopathic and mmj are the way to go.

Good luck with your own decision process

[MSer102]

mscubed, I think you are on the right track with good diet and healthy habits. Those are never bad.

Have you tried pulsed IV steroids? The most popular way to do that is one 1000 mg IV of Solu-Medrol per month. Since its only one day you don't get the terrible short term side effects that a 3 or 5 day relapse treatment causes. Its in and out of your body in just a few days but it can reduce inflammation for an entire month. You can re-evaluate every 3 months or so to see if its worth continuing.

One dose a month still adds to your risk of long term side effects but in some ways its no worse than any of the DMDs. If you can tolerate a day of steroids it could be worth trying before you decide to give up on treatment medicines altogether.

[SNOOPY]

Hi mscubed,

In my 28 years of being diagnosed I have never, ever used a DMD. At the time of my diagnosis (1985) there were no DMDs.

Betaseron was the first DMD which became available to the general MS population, by lottery, in 1993. I had a lottery number.

Since Beta was so new and there was still much unknown about it I chose to wait. To this day I still feel the same about DMDs...I don't believe they work as well as we are told.

I think the hardest part about choosing not to use a DMD is (for me, at least) the suggestion that by doing that, you are not fighting.

That is the opinion of others with MS, family, friends and even Doctors. Well, what the heck do they know? There is still much unknown about MS, researchers can't even give definite answers about this disease as of yet and MS has been around since at least the 1400s

You are the only one who can define what "fighting MS" is for you. I don't use a DMD but I, my family, and Doctors have never said or believed I am not fighting this disease. I am simply doing it my way and on my terms...right or wrong

do I really want to be immuno-compromised, for that?" No!

When having MS your immune system is compromised or as I have been known to phrase it --- our immune system is confused.

DMDs are not immune suppressant but immune modulating.

btw, all the relapses I've had were while I was ON either Avonex, tysabri)(and badaboom, last night while on tecfidera)...

You can still have relapses while on a DMD and you can still have progression. These drugs do not come with any guarantees.

MS is still a crapshoot regardless of using or not using a DMD.

I know my doctor will not approve.

Your neuro may or may not approve. However the choice is yours and not you neuro's.

I am very fortunate. My neuro and I discuss DMD options at most of my appointments. He knows how and why I am choosing not to use them and is very gracious about my choice.

I have had 5 exacerbations (relapse, attack, flare-up) in the past 28 years, some progression, some permanent symptoms and symptoms that come and go.

I have not had an exacerbation in about 11 years, no clinical evidence of progression in several years, my EDSS is very low and my MRI has shown improvement.

Note:

This is my experience with my MS and not everyone will have my experience

[jjs]

I am very fortunate. My neuro and I discuss DMD options at most of my appointments. He knows how and why I am choosing not to use them and is very gracious about my choice.

My neuro is the same way - she did not think I was odd or strange or wrong for not wanting DMDs or any other meds. I was thankful for that.

I have had 5 exacerbations (relapse, attack, flare-up) in the past 28 years, some progression, some permanent symptoms and symptoms that come and go.

I have not had an exacerbation in about 11 years, no clinical evidence of progression in several years, my EDSS is very low and my MRI has shown improvement.

Note:

This is my experience with my MS and not everyone will have my experience

I have had symptoms for about 2 1/2 years now and have had several relapses/exacerbations in that time and have gone from very active and fit to pretty much useless most of the time. I am a little concerned here but what can I do? [just to be clear, I have not been officially diagnosed but the neurologists said I have a 'textbook case' and they are just waiting for the inevitable - more solid spots on my MRI - to meet the criteria for an official diagnosis.]

Snoopy, are you doing anything special for diet?? Supplements? Any advice? I know each case is different but maybe there is something I can learn from you?

[SNOOPY]

Snoopy, are you doing anything special for diet?? Supplements? Any advice? I know each case is different but maybe there is something I can learn from you?

Hi jjs,

Although MS diets seem to be quite popular I have never followed a special diet

I do use supplements and have been doing so for several year. MS was not considered when starting supplements.

I have added and subtracted many supplements over the years. I have also gone off all supplements as an experiment. I have found I feel better using supplements but I have not noticed any difference MS wise.

Exercise has been most beneficial for my MS. I have been exercising from the beginning of my diagnosis and on the recommendation of my neuro.

Talk to your neuro about your concerns, hopefully he will have some options for you. Best wishes, jjs

[knuckle]

If you're interested in an "alternative" approach, this is my regimen...

4.5mg LDN nightly before bedtime.

300mg Alpha Lipoic Acid (ALA) before breakfast and dinner
500mg Acetyl L Carnitine with the ALA
1000mg Curcumin
1500mg N acetyl Glucosamine 3X daily
3000mg Methysulfonlmethane (MSM)
1000mg Choline
5000iu Vitamin D3
B Complex
500mg Calcium 2aep
Magnesium Complex / Magnesium Orotate
1200mg Malic Acid
2000mg Apple Cider Vinegar

Fish Oil
Flax Oil
Hemp Oil
Avacado Oil
Coconut Oil
Oregano Oil
Lecithin
Mushroom Complex
Cinnamon
Cayenne Peppper
Amino Acid Complex
Octacosanol

And this stuff called "Green Max Powder"

It's a lot of of supplements and you may laugh, but I'm doing really well on my regimen. I've put a great deal of research into it and I figure my cost is around $50-$75 a month.

I have no fatigue, my optic neuritis is gone, no cognitive problems. In general, my MS seems to have stopped progressing. My walking is terrible, but that is from accumulated damage over the past 15 years while on Avonex, Rebif, Copaxone, Novantrone and Tysabri.

The thinking behind my approach is to modulate Tcell activity and nourish the Myelin Sheath. I also think anything that helps with Psoriasis probably benefits MS. Many of these supplements are taken by people with Psoriasis (Alpha Lipoic Acid, Malic Acid, Apple Cider Vinegar) with good results as well as LDN.

Tecfirda, or "Fumaric Acid Esters / Dimethyl Fumarate" and derived from Fumaric Acid, is used for Psoriasis. Malic Acid is part of the same cellular process - the Kreb's Cycle. Malic Acid is used in cosmetics and toothpaste. Since I've been taking it my skin looks great and I believe it, along with Apple Cider Vinegar help slow MS. Apple Cider Vinegar is a folk remedy for MS.

I wouldn't be surprised if the efficacy rates of Tecfirda and Malic Acid were in the same ballpark but we'll never find out. Or Fumaric Acid. Malic Acid costs $3 a bottle, Fumaric $30 a bottle. Tecfirda, a refined form of Fumaric Acid, $50,000 a year. All good for Psoriasis.

Countries that historically eat spices daily in their diets, like India (Tumeric/Curcumin) the Middle East (Cinnamon/Saffron) and Central America (Cayenne) all have low rates of MS. Curcumin, Cinnamon and Saffron are all being researched as MS treatments and Curcumin is now in a MS clinical trial for RRMS.

Alpha Lipoic Acid is in clinical trial for SPMS.

N acetyl Glucosamine halted MS in rats and regrew their myelin sheaths.

Calcium 2aep has been used for years as an MS therapy in Germany.

Google any of these with "multiple sclerosis" and you'll find the research.

If I could go back in time, back in the early 90s, I would have never stepped into a neurologist's office, taken all those drugs, endured all the shots, infusions, blood tests, MRIs, money, money, money...but there was no Internet. Now if you decide to go the "alternative" approach you can make decisions about how you want manage your MS on your own much easier.

[MSer102]

This is a good regimen but I think like anything else it should be viewed in perspective.

my optic neuritis is gone

Almost everybody's optic neuritis is gone in a few weeks and it doesn't have anything to do with treatments or supplements. Optic neuritis is a self limiting inflammatory episode that virtually always goes away on its own after a couple of weeks or so. Damage to vision afterward might remain for a long time but the neuritis is long gone. What a lot of people call optic neuritis is really the aftereffects of optic neuritis. The studies show that most people get most of their vision back after optic neuritis anyway. A lot of people get all of their vision back.

Apple Cider Vinegar is a folk remedy for MS.

Apple cider vinegar is a folk remedy for EVERYTHING!

N acetyl Glucosamine halted MS in rats and regrew their myelin sheaths.

Rats don't have MS. They have EAE (experimental autoimmune encephalomyelitis, sometimes called experimental allergic encephalomyelitis) which was induced in them intentionally. It's important to remember that it's experimental. EAE in animals isn't exactly the same thing as MS in humans and researchers know that test results don't always apply to humans. A lot of things that looked good in mice and rats never panned out in humans.

Now, none of that is a reason not to take supplements but I think it's important to keep facts straight and keep expectations realistic. I think it's a lot easier for people to keep a cool head if they don't get their hopes up too high especially when it's based on misinformation.

[knuckle]

A little clarification on my post per MSer102's comments...

I've had optic neuritis 3X, each requiring steroids to resolve, but always not completely with my two eyes not tracking correctly and exacerbated by stress, heat and humidity. My optic neuritis has just always been there in my right eye, even through 18 infusions of Tysabri. I've had MS now since the early 1990s and have worked my way through most of the drugs.

My eyesight started improving when I started LDN about five years ago and I havn't had any optic neuritis symptoms since. I had an eye examination about two years ago and the doctor said she saw no evidence of MS on my optic nerve.

I think there is some validity to the Apple Cider Vinegar folk remedy because ACV contains Malic Acid which, as I explained in my post, is related to Fumaric Acid and hence, Fumaric Acid Esters, or Tecfirda. Apples, ACV, have always been known as beneficial for skin and oral health because of their high Malic Acid content. Besides Psoriasis, Malic Acid seems to help with other autoimmune conditions including Fibromyalgia and Rheumatoid Arthritis.

ACV may be a folk remedy for EVERYTHING but that may be because Malic Acid seems helpful across several chronic diseases. I think that Malic Acid in it's role in the Kreb's Cycle, may contribute to the production of Endorphins circulating in the blood and Endorphins are Hormones that serve the modulate Tcell activity. Also, the progression of MS, the differences in how the disease effects men and women and by age, seems Hormone-related.

Vitamin D, the "sunshine vitamin" is also a Hormone and I think there is a connection between vitamin D and the Kreb's Cycle. Areas in the world where there are higher concentrations of MS, and coincidently Psoriasis, are areas where people don't receive a lot of direct sunlight on their skin and may be vitamin D deficit, unless they get their vitamin D through diet - principly oily fish - like Norwegians and Eskimos.

What may be going on here is an Endorphin deficiency and Tcell activity is imbalanced. It is interesting to note that many spices serve to produce Endorphins as well. The main therapeutic action of Low Dose Naltrexone (LDN) is to produce Endorphins and LDN has been found helpful by users with MS, Psoriasis, Fibromyalgia, RA, Crohn's, Lupus, and Cancer.

It's quite possible that Tecfirda, "Fumaric Acid Esters / Dimthyl Fumarate", has high MS efficacy because it is increasing Endorphins circulating in the blood. Dimethyl Fumarate in correcting a Fumaric Acid deficiency in the Kreb's Cycle - maybe caused by lack of vitamin D.

Dimethyl Fumarate - good for MS, Psoriasis, and do a little research and you will find it being studied for other autoimmune diseases...and cancer.

So you've got this interesting relationship between Endorphins, Tcell modulation, the Kreb's Cycle, Fumaric Acid and Malic Acid.

I have yet to be explained how Tecfirda / Dimethyl Fumarate works. All I ever read is "it's mechanism of action is unknown". Really? It's said to modulate the immune system. Well, how does it do that? Maybe Tecfirda produces Endorphins and maybe there are less toxic ways to do that, certainly less expensive.

Maybe there's something to the old saying, "An apple a day keeps the doctor away".

As for N Acetyl Glucosamine (NAG) and rats...the reason researchers use rats is they share a lot of biology with humans. You can make fun of rats, EAE, but that's how the science is done and the Stanford NAG study is quite impressive, especially in regards to myelin regeneration. I've always thought the fact that Glucosamine, found in creatures that regenerate their shells, an interesting connection.

Since you can buy NAG for about $12.00 a bottle don't expect big pharma to be funding any human MS trials soon. But it is non-toxic, the rats love it, and it has shown efficacy in Crohn's human trials, another autoimmune disease.

[readingteacher]

Wish I had read this before I started the same thread

I just started a very similar (practically the same) thread moments before noticing yours, mscubed. I guess I could have saved myself the time by looking at the other threads, first.

I'm so glad that I'm not the ONLY one who is seriously considering this option. I had 3 hospitalizations between January of 2011 (?) and July 2012. Before the first hospitalization, I'd had a major exacerbation and been treated with IV steroids for a week, only to find that they didn't help at all. This was while I was on Copaxone (which had not been all that bad of a DMD, except for the stinging/itching after each shot).

Was turned down for Gilenya early in the summer, so my neuro put me on Betaseron. The nurse with whom I dealt for the details (when choosing another injectable; the only option my insurance company would accept), told me that this was the one interferon most of her patients could tolerate the best. That sounded promising, to me.

Special note: Just got a call rescheduling my neuro's appt. for an earlier date. Took the opportunity to remind them to check with him about if it's ok to stop "cold turkey."

I just know that I felt the best I'd felt in a long time, when I completely stopped Copaxone for awhile (before being put on Betaseron). I'd just really like to enjoy the absence of these nasty side effects for, at least, awhile. I don't know how much it will affect my probability for having any relapses, but isn't that part of the unpredictable nature of simply having MS in the first place?

***Concerning immune systems, I did note that Betaseron lowers your white blood cell count, when I read about it. Not exactly something I need when all of the viruses "come out to play" during the fall and winter.

[sw8689]

I had to stop my DMD's, about 8 years ago after many adverse reactions. The one that did work orders for me was novantrone/mitaxantrone, once a month for three months, it made me very ill, but, It actually satabilzed my disease. Enough so, that when I reacted to copaxone shortly after, the doctors were comfortable managing my symptoms only and monitoring the lesions for any changes, no mor DMD's, unless there was a major change. (There has been a change, a car accident and new lesions formed, ms is worsening, two years ago). But that's another story.
So I had been managing well for six years following swank type diet, now gluten free, fresh foods, organic on the foods that are on the dirty twelve list. And others locally grown. Alpha lipoic acid and vitamin injections, and two weeks ago started trying cannabis..hope this helps in some way.