Who doesn't take meds for relapsing remitting and why?

[sarabeach123]

Hi,

I am looking for some feedback from people who don't take medication and why they made that decision. I just got my JC virus test back and I am negative. My neuro is considering a switch to tysabri after my next MRI. I feel like the negative result should be happy news, but it actually makes me quite nervous. I am not sure if I want to start tysabri. I am on tecfidera right now, but even that is not super comfortable for me.

I rarely take medication, I would rather drink a glass of water and take some turmeric capsules than take an advil. I've read so much stuff lately about optimizing your health through proper gut health, eliminating toxins, sugar, factory raised meat etc. I'm not sure I believe this is necessarily a "cure" for MS so I am stuck between being really scared to take the medication and being really scared not to take it.

[marti]

I took Copaxone for years but started having some weird reactions. My neuro felt that I was doing ok without it and just took me off the stuff. She never offered anything else. This is NOT the best doctor around. But.. there's an answer for you.

[TexasBlue]

I haven't been on an actual MS med for years, and the reason was because of the cost, even with my insurance at the time. I used Avonex. I can also say, I personally think that it caused me to start progressing much faster. I would tell anyone to try as long as possible (just my opinion) because the alternative sucks.

I'm not familiar with a lot of the newer ones, but I have known people that have or do use tysabri, and some say they love it, and I personally know someone that is now paralyzed from the waist down. The ty was not "proven" to cause it, but they believed he got an infection in his spinal cord secondary to the ty.

For me the only problem I had with the Avonex, was just the flu like symptoms for a couple days. The main thing was to take pain relieve before taking my injection.

Good luck on this journey, it's not for sissies lol

[pennstater]

I am stuck between being really scared to take the medication and being really scared not to take it.

I have been on DMTs, so I can't add to your discussion. I just want to reassure you that your thinking is shared by many on this board, whether newly diagnosed or having dealt with it for many years.

I am sure you will get more feedback. Good luck to you.

[SNOOPY]

Hi sarabeach123,

I have been diagnosed for 31 years and I have never used a DMT/DMD.

When I was diagnosed in 1985 there were no DMTs/DMDs. The first DMD to became available for the general MS population in 1993 was Betaseron...by lottery numbers. When my number was coming up I had an appointment with my Neurologist and we discussed my possible use of Betaseron.

Within this conversation we both agreed it was best I wait as this was the first medication of it's kind and there were many unknowns. As the years went by it became my personal choice not to use a DMD/DMT.

Many with MS are scared or concerned about not using a DMD and some feel they would be worse off without a DMD. I feel and believe the opposite, for myself. I believe I would have been worse off had I used a DMD.

This disease affected my spinal cord from the beginning and my c-spine, at one time, showed numerous lesions on the c-spine. I had started seeing a new Neurologist and initially he only looked at my brain MRI which is considered "unremarkable" and said I had been misdiagnosed. I then asked him if he had looked a the c-spine MRI. After looking at the c-spine MRI he was shocked I was still walking unaided. He then believed I had a variant of MS, specifically NMO. I was tested ---negative.

It's important to understand we, as patients, have a right to refuse treatment. However, most if not all Neurologist will tell you, you're wrong. The National Multiple Sclerosis Society recommends getting on treatment asap.

None of us have any guarantees on or off DMDs/DMTs. MRIs can show more or less lesions on or off DMDs/DMTs. Relapses can happen on or off DMDs/DMTs and progression is also still possible on or off treatment.

If your choice is to not use a DMD/DMT and you have a relapse(s) and/or progression will you regret or start second guessing your decision about not using a DMD/DMT?

If the answer is yes then you need to be on a DMD/DMT.

When you choose not to use a DMD/DMT then you are acknowledging you understand this disease will take it's natural course, for better or worse. And you are okay, mentally, with this. You can choose to use a DMD/DMT at anytime.

Best wishes on your decision

[marti]

Hi sarabeach123,

I have been diagnosed for 31 years and I have never used a DMT/DMD.

When I was diagnosed in 1985 there were no DMTs/DMDs. The first DMD to became available for the general MS population in 1993 was Betaseron...by lottery numbers. When my number was coming up I had an appointment with my Neurologist and we discussed my possible use of Betaseron.

Within this conversation we both agreed it was best I wait as this was the first medication of it's kind and there were many unknowns. As the years went by it became my personal choice not to use a DMD/DMT.

Many with MS are scared or concerned about not using a DMD and some feel they would be worse off without a DMD. I feel and believe the opposite, for myself. I believe I would have been worse off had I used a DMD.

This disease affected my spinal cord from the beginning and my c-spine, at one time, showed numerous lesions on the c-spine. I had started seeing a new Neurologist and initially he only looked at my brain MRI which is considered "unremarkable" and said I had been misdiagnosed. I then asked him if he had looked a the c-spine MRI. After looking at the c-spine MRI he was shocked I was still walking unaided. He then believed I had a variant of MS, specifically NMO. I was tested ---negative.

It's important to understand we, as patients, have a right to refuse treatment. However, most if not all Neurologist will tell you, you're wrong. The National Multiple Sclerosis Society recommends getting on treatment asap.

None of us have any guarantees on or off DMDs/DMTs. MRIs can show more or less lesions on or off DMDs/DMTs. Relapses can happen on or off DMDs/DMTs and progression is also still possible on or off treatment.

If your choice is to not use a DMD/DMT and you have a relapse(s) and/or progression will you regret or start second guessing your decision about not using a DMD/DMT?

If the answer is yes then you need to be on a DMD/DMT.

When you choose not to use a DMD/DMT then you are acknowledging you understand this disease will take it's natural course, for better or worse. And you are okay, mentally, with this. You can choose to use a DMD/DMT at anytime.

Best wishes on your decision

[ru4cats]

I begin my 7th year of Tysabri on Friday. I absolutely love it since it is so easy to do...one little stick once a month, and I'm good to go. Since I was diagnosed late (58+), my neuro said I would progress more rapidly and graduate to SPMS quickly...I did 2 years later. Supposedly, I am no longer in the inflammatory stage since I don't have relapses, and I could stop Tysabri. However, research on stopping DMD's late in life is very limited, although the RMMS Center has started one. What research has been done has been labeled "indeterminate"; some people do well, some have had relapses. I keep remembering that 95% of the effects of MS are hidden. Hopefully, the study will provide a clearer picture.

Tysabri has the highest efficacy of all the DMD's, I am JC-, and my insurance covers the cost. Who knows what research will say in 10 years. They just came out with a study that shows a 73% increase in aggressive prostrate cancer. Five years ago "people in the know" said yearly PSA tests weren't necessary. Coincidence? I don't think so.

I'm just not willing to gamble, so I'm sticking with Tysabri.

[Tawanda]

I am stuck between being really scared to take the medication and being really scared not to take it.

I think you nailed it! I was on Avonex at the beginning of my journey, got all excited when an oral medication finally became available and switched to Tecfidera. Tecfidera was bad news in my case...everything that could go wrong did go wrong...my blood counts were abnormal, my hair was falling out and the last straw was getting Shingles. I never went back on Avonex. I filled out paperwork for Plegridy about 3 times and never followed through. Money is an issue for me, too...I have a kid to put through college soon.

I had FLCS (Feel Like Crap Syndrome) both on and off my DMTs, so I just assume not take them anymore. It would be a huge insentive if these drugs actually helped with yucky MS symptoms, but they don't do nuthin' for them! I just took my DMTs for years like a good girl, hoping they wouldn't have deadly side-effects and that progression was being slowed down. Maybe it was, but without my crystal ball, I will never know for sure. For years I hung on to the belief that as crappy as I was feeling, if you I weren't taking meds, I'd feel even crappier. CRAPPIER?! As a wise friend told me, with MS, there is always a "worse", as hard as that is to believe, I know this is true (a good case for going with a DMT if I ever heard one!).

As I have gotten older, the truth is that I have slowly lost my fear (along with my fight) and gotten real tired of waiting for the "Great Pumpkin". I would NEVER tell ANYONE not to take a DMT, but barring anything waaaaaay out of order on my upcoming MRI ("the reading of the tea leaves" as I call it) I will "probably" (as in never say never) continue to forgo treatment and spend my "DMT money" on food, electricity, etc.

Good luck to you, and to all of us in our various and individual situations, in making this most personal decision.

[Tawanda]

a footnote

BTW, if my daughter was diagnosed with MS I would want her on a DMT. For me, if neurologists simply wrote scripts for this stuff, I would probably take one. My fatigue is so daunting that filling out the DMT application, getting the permission from my insurance company, getting endless nuisance calls and mailings from Biogin (they really need to CHILL OUT!), getting blood tests, having to clean my house because a nurse is coming over to show me how to properly inject, etc. is unfathomable now. I suppose that is why I have started paperwork and never completed it. Just brushing my teeth, let alone flossing them, has become a monumental effort! My energy units are spent on my family. When DD goes to college, I will probably have more energy units to use on myself.

[pennstater]

BTW, if my daughter was diagnosed with MS I would want her on a DMT. For me, if neurologists simply wrote scripts for this stuff, I would probably take one. My fatigue is so daunting that filling out the DMT application, getting the permission from my insurance company, getting endless nuisance calls and mailings from Biogin (they really need to CHILL OUT!), getting blood tests, having to clean my house because a nurse is coming over to show me how to properly inject, etc. is unfathomable now. I suppose that is why I have started paperwork and never completed it. Just brushing my teeth, let alone flossing them, has become a monumental effort! My energy units are spent on my family. When DD goes to college, I will probably have more energy units to use on myself.

I will say the one good thing about being on Tysabri is the Infusion center I use also takes my blood at same time when tests are due. Saves me from getting unnecessarily stuck.

Also a great neuros office, as they do all the paperwork and fight the insurers, and for financial assistance thru pharmaceutical, they do the work and just get patient to sign. Lucky that way.

[pennstater]

Hi Sara,

Marco posted a thread in General area of the medications forum that shares recent research on early usage of DMTs in MS. Not trying to influence you to take them, as very personal decision for each individual. But any decision should be made after educating oneself as much as possible and doing their own risk assessment/tolerance.

Good luck and let us know what you decide .

[DXB]

Tysabri is quite safe if you remain JC- , when you convert to JC+ one day you could hopefully transition to ocrelizumab assuming it gets FDAs/EMAs nod.

There is compelling evidence that the new "highly effective drugs" (e.g. Tysabri , Lemtrada, maybe Gilenya ,hopefully Ocre) could change long-term outcomes , the only thing that casts doubt is the fact that they have been only relatively recently introduced and we can't yet tell their impact 20 or 30 years down the line yet..

[ru4cats]

DXB,

Totally agree! However, not all people will convert. I've had 12 tests, and I'm still negative!

I've never met the man at our infusion center (42, I believe), but after 10 years on Tysabri his EDSS has going backwards, from 4.2 to 2.2. Me, not so lucky!

[pennstater]

DXB,

Totally agree! However, not all people will convert. I've had 12 tests, and I'm still negative!

I have been on Tysabri 4 years and knock on wood, still negative. If I recall right, statistics indicate the12-24 month period has the highest conversion rate to positive.

[Carolinemf]

Hi all.
Even after reading the quantity of posts that i have read on MS world in little under a year- it still amazes me at the similarities of opinions and experiences in regard to dealing with MS (and sometimes other things as well) This is at times comforting and yet when i read about those newly diagnosed still going threw 'trial n error' in much the same way I did over 30 years ago it can also be very disheartening that things have progressed so little.

A lot of patients don't take meds for a considerable time after presentation any way because it some times takes years to get a conclusive diagnosis.
It took me over 10 years to be diagnosed. Apparently my inability to speak and paralysis was 'all in my head'. This can be fairly typical for RRMS.

After diagnosis I entered a study using Betaferon (Aus, Betaseron US)
I took this for about 4 years. I was terrified not to take something as I had an aunt and uncle who had the most severe type and passed away in their early forties.'Scared to take and scared not to take' big time!!

I decided to quit Betaferon because it's side effects were worse than my ms symptoms.
I was fortunate to be fairly stable for quite a while with mild relapses.
I personally believe that this was mostly due to stabilising my hormones.

So other than the betaferon and one course of steroids (never wanted a second) I made it through about 27 years without other dmds.
Just dealt with each relapse as it occurred and got on with life.
I changed docs 4 n 1/2 yrs ago and he recommended I start Tysabri.
I don't regret starting it, but i am still uncertain if it has helped. I am JC + but titers are reduced.

I'm now about 32yrs past onset and am spms not rrms and experiencing significant brain atrophy and reduced cognitive function.
I am at present weighing up the pros n cons of stepping up treatment to Lemtrada as my doc has recommended so the decisions never end.
The hardest thing is that it is established that the earliest ANY illness gets attention the greater the chance of successfully treating it.
I feel a bit like I may have missed the bus in this regard so am still undecided about whether the POSSIBLE BENEFITS outway the side effects with starting Lemtrada.

How old are You? How long since onset? How disabled? Severest symptoms? Rate of progression?
I am considering these things at present. As I have done in the past.
I think if I were at onset stage and relatively young I would opt for the best med available to me.
As others have indicated some times its easier to not have another thing to organise/worry about and i do find that I still begrudge the lost time, energy, money that i have expended with doc visits taking meds and stress that accompanies 'all of the above'.

It is still an unfortunate reality that those with the most disability and progression from ms and have the most urgent need of meds still have the least options available to them.

There are others with RRMS who can lead virtually a normal life with just a few speed bumps along the way.

I fell some where in between and now my progression has caught up with me.

If I'd been more aggressive with treatments , would I be better now?
Would I be worse now if I had done nothing at all?
Did pushing through regardless of the pain and stubbornly refusing to be beaten help keep me fit enough to recover each attache? Am I progressing more now because I am tired of fighting now?
I have begun researching everything and changed my diet and started taking supplements recently. Should I have done this earlier? Will it help?

These questions have no conclusive answer. Even after all these years its still down to a personal choice and opinions.

All the best