NO DMTs?????

[Tawanda]

BTW I asked my lovely MS neuro if she could recommend an anti-inflammation diet. She had NONE to offer!!
What??? How can she not know about how inflammation contributes to MOST diseases???

Jan

I didn't even want to go there, but my MS friend who has been doing well without a DMT is a fanatic about her diet. It is an anti-inflammatory diet she has developed and tweaked for herself over the years...her ace in the hole, or again, is it a coincidence/a placebo effect? Well, I don't know! These types of diets are so strict that every time I research them, I get discouraged. Suppose I give up one of my last pleasures in life and go rapidly down hill anyway?! Even if I was young, tall and gorgeous and could have had a life of a jetset supermodel, I would pass because the restrictive eating would make it impossible to enjoy the perks! I hate my MS but I love my eats!

Any anti-inflammatory practice in life sounds like a plan to me (except maybe for the "steroid pulsing" that my doctor had me on for awhile to keep inflamation at bay...only guessing that less inflamation could trump steroid damage, but that, too, has never been provedn so I stopped that treatment pretty fast).

Again, if a DMT feels right, do it! We all have questions. We all have opinions and so do our various doctors! This is just a good discussion...

[JerryD]

mjan, the answer to your question about MD's knowing nothing about inflammation and disease is simple. It doesn't benefit the doctor to know anything about inflammation and diet as it relates to disease, chronic or otherwise. Good luck Good discussion !

[pennstater]

They think I had untreated MS for 13 years, then diagnosed. I didn't change diets really, but if anything, ate much better after diagnosis and exercised regularly. I was on a DMT soon after diagnosis. Regardless, I progressed and when started to progress more rapidly, onTysabri, which seemed to put a slow down on it.

I have hundreds of questions, that I will never have answers to. I figure I had "mild" Ms for 13 Years, diagnosed, and then quiet again for another 2-3 years. How much do DMTs help, I don't know. I was fortunate for years. Would I still be? I have no clue, but afraid to take the risk right now. Maybe in a few years.

[Myoak]

I have no qualification to comment on diet but here goes anyway...

There are huge differences in various MS diets and some people have success on a particular MS diet.

But our own practice is to eat a balanced diet because we believe it probable that there are undiscovered important-to-health micronutrients which could be omitted unless we consume a variety of foods. If certain food groups get ignored, as many MS diets do, we may miss important nutrients and over time, that could prove detrimental to the best possible long-term health.

But to each his own; there could vey well be reasons why a specific diet would be just the ticket for a particular individual. For our household, a balanced diet is what we strive for.

[Tawanda]

Let me get this straight...

Taking DMTs won't help us get or feel any better and the BEST scenario is NOT that we won't get worse, but that we *might* not get worse as quickly?! If this is the best we got, it's no wonder I haven't been able to shake this sense of impending doom off me since the day I was diagnosed!

[Myoak]

“If you have no DMTs and have remissions or improve, what do you attribute that to then?”

Many would attribute it to reserve capacity, the reserve neural pathways utilized when demyelination forces the brain to configure work-arounds of damaged areas.
Some describe the transition from RRMS to SPMS as occurring when reserve capacity is exhausted. In other words, the reserve neural pathways have been exhausted and MS progresses w/o remitting.

Do DMTs lengthen the amount of time between RRMS and SPMS? Definitive proof is sparse, IMO. To me, it appears if the older MS meds may or may not lengthen time from RRMS to SPMS, an argument can be made on both sides.

The newer meds have much better chance, IMO, but long-term studies to prove that are difficult. For example, how ethical is it to ask someone (blinded) to take a placebo for 5 or 10 years when it is known that taking the MS meds decrease lesions seen on MRI and also reduces relapses?

Concerning time for transition from RRMS to SPMS it is interesting to note that a Swedish study found that there was an 8 year difference in that time among smokers and those who quit smoking:

Smoking Can Accelerate Disease Progression in Patients with Multiple Sclerosis
http://multiplesclerosisnewstoday.co...ple-sclerosis/

Quote “One well-established risk factor for developing MS is smoking tobacco; however, it is not clear if smoking after the disease diagnosis is detrimental.

In order to address this question and assess whether smoking after an MS diagnosis alters the time of disease progression to SPMS, researchers conducted a study with a cohort of 728 MS Swedish patients who were smokers… After the diagnosis, 332 MS patients out of the 728 continued to smoke.

In the cohort analyzed, MS patients who continued to smoke after their diagnosis developed SPMS faster (at 48 years of age) in comparison to MS patients who quit smoking (56 years of age).” End of Quote.

[Tawanda]

If certain food groups get ignored, as many MS diets do, we may miss important nutrients and over time, that could prove detrimental to the best possible long-term health.

Myoak,
I just re-read your post and the point you're making here about diet is solid. Perhaps the people who found the magic MS-diet bullet are comparable to the people who found the MS-DMT bullet. What are the odds of getting it right, either way??? Wish I knew!

[Myoak]

What are the odds of getting it right, either way??? Wish I knew!

Hi Tawanda,
We all wish we knew but usually just end up making the best guess we can.

One of the significant misunderstandings involving MS meds is comprehending relative risk reduction. I'll use an illustration.

A control group of 100 MSers take no meds for one year and 9 have relapses. Another group of 100 takes copaxone, or any of the several interferons, and has only 6 relapses. The relative rate of relapse reduction is 33% (9 minus 6 =3; 3 is 33% of 9).

33% is the very near the 30% reduction in relapses typically listed for copaxone and all the interferons. So the example is realistic.

MS meds are always listed in terms of relative risk, not absolute risk. In the example above the absolute reduction in risk of relapse is 3%.

I believe many MSers do not grasp the difference between relative risk reduction and absolute risk reduction.

Of course , if you are one of the 3 in the example who didn't relapse because you were on one of those meds, it would be worth taking the med. Also, please don't neglect the fact that the meds mentioned reduce new lesions seen on MRI by 50-60%, again, in relative terms not absolute but still significant, IMO.

One thing I want to emphasize is that I am stoked about a new medicine because I believe it will make a huge stride forward in treating MS effectively and safely. The med is ocrelizumab. It appears to have Tysabri-like effectiveness yet does not carry anywhere near the PML risk.

The reason is, unlike Tysabri, ocrelizumab leaves T-cell function intact (HIV patients clear JC virus when T-cell function is working well enough).

The application for FDA approval is expected to be made in January. Probably get approval later next year. I hope you, poppydarling, and others who are not on a med or not satisfied on one will give this new med a long, hard look. To me, it looks pretty good.

In the meantime keep maintaining health as best as possible, you know... no smoking, keep VitD levels elevated, eat well, exercise, lower stress, have fun, get rich and smile a lot, too.

Best thoughts!

[SNOOPY]

Through the years on MSWorld I have posted my experience with a long standing diagnosis of MS and the fact I do not and never have used the DMTs.

I have had 6 exacerbations over the course of a 30 year diagnosis. The exacerbations, one for each year:

-1985 - severe
-1986 - severe
-1994 - severe
-2001 - mild
-2002 - mild
-2014 - mild

A MRI I had in 2004 showed and listed multiple lesions on the cervical spinal cord. I don't seem to carry much for brain lesions and the ones I do have (3) are listed as non-specific. In 2013 my MRI of the c-spine was quite improved, I had 3 countable lesions (down from multiple) and the brain MRI was unchanged. The MRI in 2014 has remained stable/unchanged.

Even after 30 years I am still able to remit as proven by the exacerbation last year which did partially remit. The only thing I can attribute to my journey with this disease is exercise. When I was diagnosed my Neurologist told me the best thing I can do is walk.

If I had been on a DMT it would have been assumed the DMT wasn't working when I had my 3 severe exacerbations as well as the increase of lesion load on the 2004 MRI. The DMTs would have been the "reason" for decreasing lesion load and the milder exacerbations.

My Neurologist had said they see lesion load change for those on or off DMTs.

I was put into the SPMS category in 2013, 28 years after diagnosis. This was not done because I had significantly progressed (I have not), but based on the length of time with the disease and the, now, stable MRIs.

When I was diagnosed there were no DMTs. The first one became available in 1993 (Betaseron) by lottery, that was 8 years after I was diagnosed.

I read Threads from those worried and scared how bad the disease might get if they don't use a DMT. I worry about how much worse I would be if I had used one.

[KevsLuv]

Same here!

Taking DMTs won't help us get or feel any better and the BEST scenario is NOT that we won't get worse, but that we *might* not get worse as quickly?! If this is the best we got, it's no wonder I haven't been able to shake this sense of impending doom off me since the day I was diagnosed!

I was on rebif for a year until I went rogue and decided to stop the injections. For the 3 months I was off of my DMT, I felt better than I had in a long time. I had more energy, less pain and a much better mood.

Of course I started to feel guilty and selfish that I MAY be cheating my kids and husband out of the healthiest version of me possible. But how could I know if I was going to keep feeling good or if the MS would progress?!

So, I got on gilenya in June 2015. I was pulled off of the med earlier this week due to extremely low, even for gilenya, white count and elevated liver enzymes.

So it seems, we can't win. And I too am wondering if I should stay off all DMTs and just take my chances...

[mjan]

I was on rebif for a year until I went rogue and decided to stop the injections. For the 3 months I was off of my DMT, I felt better than I had in a long time. I had more energy, less pain and a much better mood.

Of course I started to feel guilty and selfish that I MAY be cheating my kids and husband out of the healthiest version of me possible. But how could I know if I was going to keep feeling good or if the MS would progress?!

So, I got on gilenya in June 2015. I was pulled off of the med earlier this week due to extremely low, even for gilenya, white count and elevated liver enzymes.

So it seems, we can't win. And I too am wondering if I should stay off all DMTs and just take my chances...

So sorry you are not doing as well. Hope you start to feel much better soon! Sending you healing hugs! Jan

[KevsLuv]

So sorry you are not doing as well. Hope you start to feel much better soon! Sending you healing hugs! Jan

Thanks Jan! It's so wonderful to have the support of my fellow MSers. 💗💕

[Tawanda]

So, I got on gilenya in June 2015. I was pulled off of the med earlier this week due to extremely low, even for gilenya, white count and elevated liver enzymes.

So it seems, we can't win. And I too am wondering if I should stay off all DMTs and just take my chances...

Tecfidera lowered my WBC which led to Shingles. My neurologist said this was happening to some of his patients on Tecfidera and that I should go off of it for awhile. Instead, I decided to go off of it FOREVER (the hair loss was also very alarming in my case). Since then, I have never gotten back on Tec or any other DMT (for about two years?). When I am on a DMT I wonder what the long-term side effects will be (but as I age, "long term" is getting to be less of a consideration. On the other hand, by not being on a DMT, could I be damaging my body unnecessarily (even while I am asleep?)? I may just go with a yearly MRI and let that be my guide for now (or Tarrot cards, tea leaves and a crystal ball...I haven't made my mind up yet!). The longer I live with MS the more wishy-washy I am getting about taking DMTs. I am longing for a bigger pluck for my buck. These questionable treatments have been a source of frustration since day one. I am sounding like a broken record...second verse same as the first. Sorry...

[Mamabug]

Thanks to all who replied..

I contacted my neuro today to get off the Tecfidera and go back on Copaxone...this time at least there is the 40 mg every other day shot available...

Glad to hear you've decided to take a DMT.

Our experiences are all different. Different DMD's are effective for different people, although some of us probably respond well to multiple choices. After 5 years of Betaseron, with borderline results, I switched doctors and medications and am now on Copaxone since 2008. I don't regret being on a DMD; my only regret is not switching sooner, when my first choice was not very effective for me. I believe DMD's help with decreasing the fx and severity of my flares because:

a) when I went off for a month or so, during the interim between meds, I had a flare, so even though it was only borderline effective (I had flares once or twice a year, for the first six years, that were fairly severe), B did keep the flares away somewhat.

b) C works so much better for me than B did. Since the switch, I've had 3 years in which I had no flares at all, and my flares are much less severe than they were in the past.
Even a less-than-ideally-effective DMD was better than nothing for me.

[KevsLuv]

I am longing for a bigger pluck for my buck. These questionable treatments have been a source of frustration since day one. I am sounding like a broken record...second verse same as the first. Sorry...

My neuro called Gilenya the "set it and forget it" DMT. I really wish that had been true for me. It is extremely frustrating and I am glad I have found a community of people who understand.