Stopping All MS Meds - Have you Done it, What are your thoughts???

[JamCakes]

I am at a fork in the road here. I completed all Gilenya screening tests last week and am meeting with my Neuro on Monday to determine if I should switch from Tecfidera to Gilenya, because I have not been doing well on Tec.

I have thrown myself a big curve ball, however. I know that I do not want to take Gilenya. I do not want to stay on Tecfidera either, nor go back Rebif. I do not want take any of these immuno-modulators any longer because after 10 years of being on them, and feeling increasingly worse, I do not think that MS is an auto-immune disease at all. I don't even know if I believe all this auto-immune talk anyway.

I am wondering if I might try diet, meditation and yoga instead. I am on the brink of not being able to really do my job, my boss has asked me this year a couple of times if I am well, if I am still interested in my job... I don't talk about MS at work but I am not making it. I am in pain, I'm tired, having migraines, I'm bloated and moody, etc etc.

I have been diagnosed over the past 12 years with Optic neuritis, MS, Hashimotos Hypothyroidism, Peri-menopause, PTSD, many other little things and "possibly a little arthritic" as well.

I had mono as a teenager, my (ancient) mother thinks that epstein barr virus is causing all this and I have to wonder if she is right. I don't think that my immune-system is attacking me, I think it's attacking something that the Doctors are not seeing.

I saw a documentary a few weeks ago about TB. Tuberculosis killed 1 out of 7 people before the treatment was discovered in the 40's. It was accepted as common truth that TB was a genetic disease that was either going to kill you quickly or kill you slowly. When you got it, you just checked out of your life and checked into a sanatorium, waiting to die.

But that "common truth" about TB's "incurable genetic nature" was not true at all. Turns out TB is caused by a bacteria, and it can be cured. !

I respect my MS Neurologist a great deal, she is a doctor, a researcher and professor as well. She is dedicated to curing MS and alleviating people's suffering from it. But I don't like her medicines, and this is all she has. She told me the last time I was in her office, a month ago, that they are beginning to suspect that there might be a pathogen after all.

!!!!!!!

That means that my mother might have been right all this time. It really could be epstein barr. And I see there is a new book out, by a man who says Spirit is talking to him, telling him it is Epstein Barr Virus causing all this trouble.

I don’t know but I do know that I am only 45 years old, and I am sick and tired of being sick and tired. I think I might drop the immuno-modulators altogether and really try to change my diet - not just be gluten free, but really stay away from chocolate, flour, fermented food, etc.

Whatever you might think about my mother or the Spirit Man -- Has anyone gone off their MS treatments for good??? Or do you have thoughts on this?



Thank you!

[Guzzy]

Hmmm.

It's a biggie.

I empathise - I'm 43, perimenopausal too, disillusioned with the meds, but I think I prefer to keep taking them until they KNOW the pathogen, but that's just my take on it.

I actually agree with your Mum. I too had epstein barr at age 19 and was terribly ill with it, but I think MS could be an interaction of genetics, low vitamin D, and a variety of pathogens, perhaps different in each person's case.

Do you work full-time? If you do, perhaps you should consider reducing your hours a bit to give yourself a chance. You sound very burnt out. Uncontrolled pain alone can make you feel like giving up. I dropped out of the workforce 7 years ago due to MS and regretted doing that. It was hard to get back in on a part-time basis and in your 40's it's way too young to have no life-focus. My gut tells me get your pain and fatigue under a little more control and you might see things differently; they can really impact on every level of your thinking and productivity.

Even if it is Epstein Barr that's the root cause of MS, then meditation, diet and yoga are not going to help eradicate it. Can you get a prescription for Symmetral (Amantadine) to try it out? It's an anti-viral that's also used for MS fatigue.

My feeling is to have a think about things before you give up on everything. I saw an MS friend do that a few years ago and (I hate to tell you) she had a relapse that was very severe. There is no looking glass with MS and that's what makes it very difficult to make a decision.

Let us know how you get on and I wish you all the best.
x

[Karenkay]

Hmm, I took Rebif for over 1 1/2 yrs. With terrible side effects. Switched over to Copaxone and took that for nearly 2yrs. The side effects were making my life hell. And I was still working full-time during all of that. I just quit. I've been off all DMD's for over 10 yrs. and refuse to take any of them ever again.

I felt no difference in my MS from taking the DMD to not taking the DMD. But my daily quality of life greatly improved.

Now, my MS is stable although I have naturally progressed into SPMS.

[JamCakes]

Guzzy and KarenKay, thank you for the responses. I am burnt out, and I don't see any good moves to make to improve my situation. I don't want a future of a diminishing life. Of "doing well, considering..."

I am used to finding a way and overcoming. There are plenty of people who feel that they have overcome MS through diet and various alternative healing methods and Eastern Medicine. I want to be open to anything, including the idea that Western Medicine still has this malady wrong and I can actually find a cure for myself.

It feels like I am at a point of making the choice between continuing to suppress my symptoms with immunomodulators -- or to take a leap and go for a cure. If I stop suppressing symptoms, then they could come back. If I have a significant flare there is a tremendous amount of risk of losing physical ability, losing my job, taking my life down a notch or two. It could lead to a tragic ending of this story.

But if I do succeed in curing myself or at least significantly reducing the viral load in my body... Well, isn't that the hero's path?

I am going to see my Neurologist this afternoon about switching from Tecfidera to Gilenya. I am going to tell her about my desire to stop all of it. I'm pretty sure i know what she is going to say. But maybe she will surprise me.

This is all very scary. Though I would rather have these sad options than the ones that so many people on this planet are stuck with.

[SNOOPY]

Nice to see you back on the forums JamCakes

Epstein Barr is one of the most common viruses and approximate 85 or 90 percent of the population has been exposed to it. But, 85 or 90 percent of those with EBV doesn't have MS...thank goodness!

Just because we have MS doesn't mean we can't have other medical and mental health issues. Although I have to admit that it's not fair We should only have to deal with MS, but life isn't always fair <sigh>

It feels like I am at a point of making the choice between continuing to suppress my symptoms with immunomodulators -- or to take a leap and go for a cure.

There are plenty of people who feel that they have overcome MS through diet and various alternative healing methods and Eastern Medicine. I want to be open to anything, including the idea that Western Medicine still has this malady wrong and I can actually find a cure for myself.

You can't cure your MS and I'm not even sure what someone means when they "overcome MS." If a person has MS they will always have MS until or unless a true cure is found. If someone says they no longer have MS then they either didn't have it to begin with or they are in remission and are making wrong assumptions. But, even in remission the disease is still active. It is possible to have remissions that last for years.

but really stay away from chocolate,

Nooooo not chocolate!

Change your diet if you so choose, many have found they felt better doing so. Exercise is also beneficial.

The reality is none of us have anyway to know how our journey with this disease will play out with or without treatment. Someone can do fine for many years and then get sucker punched by an exacerbation.

I'm sure a lot of us can relate to being "sick and tired" of this disease and it's symptoms. I am sorry you feel like this

I have never used any of the Disease Modifying Therapies (DMTs).

If you choose to stop using a DMT would you be okay (psychologically) if your disease progressed or if you had more symptoms? If not then I would suggest you keep using a DMT. It can be very difficult to accept the fact that we have the rest of our life to live with a disease that at best is difficult. Don't make it more difficult by having regrets down the way.

Best wishes on whatever choice you make

[JamCakes]

Hi Snoopy, yes, thank you for your words of wisdom! I saw my Neuro and told her my concerns about the disease modifying treatments. She was very passionate about me staying on a treatment. She pointed out that I really don't get sick, I never get infections, all these years I've been on immuno-modulators it's not the case that we are ruining my immune system. And that everyone carries viruses (which does not mean that they have the same effect on everyone, but I did not press this).

Although I am not convinced that a virus or heavy metal poisoning is NOT my problem, I was surprised by what a convincing case she made to stay on a DMT. She did understand if I didn't want to switch to Gilenya - the list of possible side effects is long and daunting, compared to Tecfidera.

So, this is where I am now - re-committed to Tecfidera, but I am also committed to improving my diet a notch (I will leave chocolate in, but leave out chocolate cake ). I'm adding sprouts, fennel, and some other more "advanced" vegetables I have not had in my repertoire before. I've also added some interesting supplements - coconut oil and spirulina powder to my morning veggie/fruit smoothies; L-Lysine to try and counter my near constant dizziness.

My Neuro also recommended a solu-medrol (steroid) IV, to try and kick this dizziness. I consented. She's also prescribing something for the dizziness, and taking up my Topomax to combat my new levels of migraines.

So I went in to her office, prepared to fight MS au naturel - and came out with new corporate drugs and a steroid program. *sigh*

I do feel calmer now, though. I have next steps that will make me feel better and allow me to continue living my current life. Thank you all for listening and responding. I would truly prefer that none of you were suffering from this disease or any other, but I am also grateful that I am not alone.


I might still give up the DMTs in the future, but not right now.

[jeannef1]

Hi Snoopy, yes, thank you for your words of wisdom! I saw my Neuro and told her my concerns about the disease modifying treatments. She was very passionate about me staying on a treatment. She pointed out that I really don't get sick, I never get infections, all these years I've been on immuno-modulators it's not the case that we are ruining my immune system. And that everyone carries viruses (which does not mean that they have the same effect on everyone, but I did not press this).

Although I am not convinced that a virus or heavy metal poisoning is NOT my problem, I was surprised by what a convincing case she made to stay on a DMT. She did understand if I didn't want to switch to Gilenya - the list of possible side effects is long and daunting, compared to Tecfidera.

So, this is where I am now - re-committed to Tecfidera, but I am also committed to improving my diet a notch (I will leave chocolate in, but leave out chocolate cake ). I'm adding sprouts, fennel, and some other more "advanced" vegetables I have not had in my repertoire before. I've also added some interesting supplements - coconut oil and spirulina powder to my morning veggie/fruit smoothies; L-Lysine to try and counter my near constant dizziness.

My Neuro also recommended a solu-medrol (steroid) IV, to try and kick this dizziness. I consented. She's also prescribing something for the dizziness, and taking up my Topomax to combat my new levels of migraines.

So I went in to her office, prepared to fight MS au naturel - and came out with new corporate drugs and a steroid program. *sigh*

I do feel calmer now, though. I have next steps that will make me feel better and allow me to continue living my current life. Thank you all for listening and responding. I would truly prefer that none of you were suffering from this disease or any other, but I am also grateful that I am not alone.


I might still give up the DMTs in the future, but not right now.

Dizziness is the symptom I hate the most! I took everything imaginable to get relief and found that wearing a foam cervical collar does wonders. It might not look cute but I can get through a day without being nauseous and unable to function. Hope this helps!
Jeanne

[SNOOPY]

Hi JamCakes,

I am glad to hear your decision made you calmer, that indicates it was the right choice for you at this time. Take care

[poppydarling]

I do not want take any of these immuno-modulators any longer because after 10 years of being on them, and feeling increasingly worse, I do not think that MS is an auto-immune disease at all. I don't even know if I believe all this auto-immune talk anyway.

I am wondering if I might try diet, meditation and yoga instead...

I don’t know but I do know that I am only 45 years old, and I am sick and tired of being sick and tired. I think I might drop the immuno-modulators altogether and really try to change my diet - not just be gluten free, but really stay away from chocolate, flour, fermented food, etc.

I hear you, on all of it My MS doctor is also a researcher and feels that MS drugs are "poison" (see a similar thread in this forum from a few weeks back) and earlier would have urged me to be on something anything, but now that I've had MS for 35+ years, he doesn't feel the same. Guess he's thinking the barn door has closed but that's not how I feel. I continue to use mindfulness and meditation and diet and supplements to help myself.

I've "failed" on a few of the DMTs including Tysabri, which actually felt effective until I developed an allergic reaction and had to come off it, which sent me into a terrible flareup I've never recovered from. So it's not just getting on and staying on these treatments, but coming off them that can also be harmful. They can also be beneficial, just not to a person like me.

My doc says "You just may not be a B cell girl" so there is another wrinkle in the decision of what to take!

I think our instincts and gut reactions are quite useful, even if doctors tend to discount them. When my doctor mentioned the recent study in The Lancet regarding MS and statins, I immediately felt like they could help me and he immediately put me on them. And you know what? I do feel better, more stable on them. So then I brought up biotin and I'm now on a daily large dose of that supplement.

My quality-of-life is so improved since getting off the merry-go-round of those drugs. Everyone has a different risk tolerance, but I think our instincts often lead us in the right direction.

[JamCakes]

Steroids and me do not mix

I am still considering going off of dmt's, but I am giving myself a break from any urgent decision making for another year or until more info reveals itself.

I will not, however, be doing this solu-medrol IV ever again. Almost 3 weeks ago now I had 3 days of solu-medrol drip. I don't think it helped anything, in fact I was so bloated and disoriented that I fell in the yard and fractured my fibula.

I'm now in a cast and trying to avoid surgery, which apparently is the standard course of action for this injury. I am not prepared to take chances with infections or just not bouncing back because I've been weaker recently anyway.

In better news, I have been doing well on my new health food plan. I am eating most of the foods and taking most of the supplements listed below everyday. I have found that I no longer want coffee an I am not craving sugar nearly as much. I have cut out the random diet coke as well, aspartame is terrible for your brain.

I have cut way back on dairy and gluten as well.

I am also not nearly as dizzy ( good thing, now that I'm on crutches!!)


Blueberries (wild maine or Canadian)
Grapefruit
Pomegranate
Kale
Spinach
Lettuce
Celery
Cucumber
Cilantro
Garlic
Ginger
Apricot
Papaya
Avocado
Apple
Parsley
Coconut oil
Raspberries
Sprouts
Sweet potato

Cat's Claw (tincture)
Silver Hydrosol
Lion'sMane
Vitamin D3
FlaxSeed omega 3
Zinc
L-lysine
Selenium
Licorice (tincture)
Riboflavin
Magnesium
Lemon Balm
Nettle
Alpha lipoic acid

Spirulina
Barley grass juice powder
Atlantic dulse (seaweed flakes)



Not an inexpensive program but this is what I am doing right now.

[AriD]

I agree with taking caution in discontinuing meds. I may or may not have paid that price. You never know. But it's great to do all these healthy lifestyle changes and stay on the meds. See how it goes. no regrets that way. You are doing ALL the right things to stay healthy.