Who has gone off their MS meds? What happened?

[Cherie]

I went off meds in 2011 at the advice of my neuro at age 60. I had been relapse free for 8 years. 7 months later I had the most intense and problematic relapse so far. Back on meds for three years then off a year because it was so expensive. Back on after another relapse. I am now on Rituxan at an infusion center at no copay and doing well on it.

[soul]

I discontinued Rebif in 2012 after 18+ years I was a patient for the PRISIMS Trials for (ifn) beta 1a / Rebif, I felt great for about a year and a half, and then secondary Auto Immune disorder started. With quite a lot of reading and consultations with my GP, I am being referred to a Environmental health clinic. I am allergic to pretty much everything, I had to go with a Natural products & clothing, the first signs of this showed up in food, I became allergic to most foods. All I can eat is Oatmeal, Apples, Oat bars,Bananas,Potatoes Broccoli and pork. I have been like this since about early 2014. I am allergic to my furniture, I played Guitar for 30+ years I can't touch Guitar strings anymore. I can't touch any oils, I can't handle chemical smells such as house hold cleaners, the smell of Gas fuel fumes.

I had to detox my bedroom by going all organic with all my bedding Pillows, throw out most of my clothes and again went all natural cottons. I had been having headaches for a long time they would be low level headaches in the morning, once I removed my pillow and went with a wool pillow my head aches stopped.

I have to say it changed my whole life, but on the brighter side I regained some health, I ride Bikes now something I couldn't do for about 28 years

I have a question, Have you ever heard of "Multiple Sclerosis Burn out" ? about 4 years ago my Neuro told me that my MS had burned itself out, so ran it's coarse < as to this statement I am still confused as to the exact meaning nor have I ever met or connected with anybody who understands that Burn Out statement
Any input on this would be appreciated.

soul

[Sunshine]

First, that sounds awful and a real challenge. I know a woman with multiple sclerosis who has similar allergic problems. I think I will show her your post.

Re Burning out, I had thought that had been debunked within the past several years. I read that somewhere.

[soul]

I came across a mention of it @ The Bart's School of Neurology a couple years ago it didn't make a lot of sense, when I first started talking about it, the subject was slammed by many people.

So whats the purpose of (IFN) in R-R MS? is it so the attacks are lessened, hoping that the patient can ride out the various attacks over time with minimal damage over the coarse of their disease and possibly come out the other end with less damage, so being able to ride out the MS with as little damage as possible. Does this make sense?

soul

[soul]

With all that said, secondary auto immune issue's are common in MS. I am sure if you are reading this that you can tell I am trying to work this out in my head as I have a appointment with the Neuro who said it to me next month he was the Chief Investigator of the PRISIMS trial out of a site in Canada.

soul

[Sunshine]

Those are good questions soul. I will be curious what the neuros opinion is.
You’re up against a lot. It was courageous of you to change your whole environment. Am betting people don’t get it and just think you’re being a fussbudget!

[soul]

Those are good questions soul. I will be curious what the neuros opinion is.
You’re up against a lot. It was courageous of you to change your whole environment. Am betting people don’t get it and just think you’re being a fussbudget!

As do I, I have found over the years being with this Neurologist for about 26 years I never get real answers, many half truths, and some out in out lies on his part.
As to my GP's opinion, she is believing me and there is too much evidence on my part that something like a secondary auto Immune going on, so I am not a fussbudget, that's a strange word fussbudget I never heard that expression before

soul

[Virginia]

Soul, anyway to get a 2nd Neurologist and get them to explain this to you? That would be what I think I would want to do. I have also become allergic to a number of things, but nothing like what you are describing.

By the way, when you lived in the States did you get Rebif on compassionate grounds because you were on it in Canada? Had it already been introduced here or is that the way you got it? I have a reason for asking. I will tell you later.

[agate]

I have a question, Have you ever heard of "Multiple Sclerosis Burn out" ? about 4 years ago my Neuro told me that my MS had burned itself out, so ran it's coarse < as to this statement I am still confused as to the exact meaning nor have I ever met or connected with anybody who understands that Burn Out statement
Any input on this would be appreciated.

I have heard of it but can't recall exactly where. I keep an eye on research as it comes along, and I do recall a brief discussion of it some years ago--and ever since then I haven't run across any other mention of it. My impression is that it's an idea that didn't catch on. Now they're talking about patients who show "No Evidence of Disease Activity" (NEDA), meaning patients diagnosed with MS whose MRIs show no new active lesions or other evidence of disease activity. Of course a person can have NEDA but it might be as a result of taking one of the disease-modifying drugs. Or maybe the person's MS just stopped being active. I believe they're still figuring this out.

So whats the purpose of (IFN) in R-R MS? is it so the attacks are lessened, hoping that the patient can ride out the various attacks over time with minimal damage over the coarse of their disease and possibly come out the other end with less damage, so being able to ride out the MS with as little damage as possible. Does this make sense?

The interferons as well as the other disease-modifying drugs seem to modify the disease in some patients--in fact, in enough of them to make them worth trying for many of us. Yes, what you say makes sense --to me anyway. Not a cure but a way of changing how the MS will behave.

[soul]

Hello, thank everybody for their input, I am still thinking about all this. As to your question Virginia, while I was a study Patient it would be shipped from the research site in Canada to me in the States. than again Custom's used to grab it at the boarder and would hold it up for at least a week, back then the US had the Orphan Drug Act,this gave Avonex a lot of power over what (IFN)s were allowed on the market, in other words they pretty much controlled the US market.
soul

[SuzE-Q]

soul, how awful to be allergic to your environment.

Are you thinking your meds were controlling it, or that it's just your body's immune system 'acting' up in another way?

Why did you go off Rebif? And have you thought about going back in it to see if it helps this environmental allergy too?

[soul]

Hello Suze, why did i stop the drug, I couldn't handle anymore after18+ years my body was like a gulf coarse. A couple years after returning to Canada I returned to the research site, the team was pleased to see me I was at a point of being shot out and over the years of being on it. i became a different person on it I was so angry when I was on the drug.
The research team gave me a Rebi smart injector, the thing was like a drill, it couldn't distinguish between scar tissue due to my past injections the thing was merciless and would drill through the scar tissue and I started going threw the Rebif flue again it was like I just started the drug and it was like being in he!! again.

The night I stopped I won't forget I had the injector in my hand, looked at it thought about how unhappy I was due to the Drug Iput on a shelf tossed out the remaining liquid I think there was one shot left in the 3 shot vial and wham into the garbage I tossed a bottle of Tylenol, and believe me I was terrified about what may happen to me in the future.

At the point of seeing my GP discussing the decision I had made, she had a different opinion then I did.
This is a long story I will come back and add more latter

So what I think and what the MS Doc thinks are complete opposite's

To keep my CNS in check I suggested I start on Pharmaceutical THC my GP was against my choice of Drug, but I wouldn't take no for an answer
As I put it to her what I wanted to do Immune Modulation, she reluctantly scripted me 1/2 a mg of THC, I looked at her and just shook my head, I wanted to go on a high dose of THC.
A few months later I was with my Neuro, he looked at me and said "Peter the people who are doing what your doing with the THC, are using this drug at a higher dose 2-3 times higher, so I said send that to my GP, she recieved the note and again reluctantly scripted a higher dose but still it wasn't high enough.

Then the Doctor left the clinic for a carrier else where, I went through a smattering of different GP's the one doc game in to cover a few of the GP's while they vacationed, and she took great interest in my case, I found she would listen to me so I started referencing papers that supported my beliefs
I took a very close look at Cesamet, and realized it only had a 1/2 life of 2 hours, from there I made my pitch

Seeing that Cesamet has a half life of 2 hours theoretically I should be using 7-8 MG a day. I remember her looking at me saying you have a good point there and yes I will up your Cesamet to 7 MG's a day saying I don't know how I am going to write that script, she wrote the script and this is how it was written
Take 2 Capsules each morning and 2 capsules prior to bed and 1 captule at 11 am, 1 PM, & 3 PM. Then said to me I am very curious about this
It was the strangest script I have ever seen.

There is much more but I need some lunch, I will add to it later
soul

[Virginia]

My memory is not as bad as I thought. Back when you were trying to get it here in the States it was you and a lady who signed in under "Lisa From Maryland". She died some years ago from cancer. Anyway, the two of you helped me not to be afraid of it and I started Rebif as soon as it was introduced in the States. I am still on it. I wonder if the Doctor telling you your MS had burned out is the same as a NP telling me I had aged out of it. My Neuro does not agree with that, and wants me to remain on it. At this time, I am going toward your record. It has been 16 years. It does not change my personality. I do sometime have a problem with trying to find a place to put it because of having given so many.

Before that I was on Avonex for 1 year and Copaxone for 6 months.

[soul]

Thank you Virginia, it was quite the fight to bring this DMD into the states, and in a way I was kind of a pawn between the FDA, Avonex but eventually the data supported what the company said about the drug.
I am not that positive about the drug 20 + years later reading on what the drug can cause after use
soul

[SuzE-Q]

I think pot is being legalized soon in Canada, are you going to go with the natural route versus the synthetic Cesamet?

They're learning more and more about the beneficial effects of the CBD/THC combo. Hopefully, with it becoming legal in so many places, much more research will be done.

Why didn't you go the medicinal MJ route, was that not available?

I know what you mean about those autoinjectors, I tried it too and immediately stopped due to its violent force. I couldn't handle it either.