Study results for 55+ MS patients

[pennstater]

Canary54 - that is definitely a curious case of MS. I thought mine was odd, 12 years between first two, and 13 between 2nd and 3rd, which led to diagnosis. But 29 years, wow! Like you, first two were "must have been a virus" since they cleared and eventually went back to normal.

I was definitely experiencing relapses for 31 years, then stopped. But stoped once on Tysabri. So was it the meds or did I transition to SPMS, oddly coinciding with the start of Ty? The riddle of MS....

Take care.

[TheBeans]

Lots of really good information and personal experience shared here---thank you, everyone! I'm still wobbling back and forth on whether or not I want to stop the DMT altogether. At the time of my diagnosis my neurologist said that I'd probably had MS for 15 years or so prior to the event that led me to seeing him the first time. He based that on what he saw on my MRI, which showed both white and gray matter and in thinking back I may have had one other flare that I mistakenly thought was something else (and which 7 different doctors couldn't explain what was going on). Since the time of diagnosis (16 years ago) I've had only one flare which was treated with steroid infusion and disappeared right after that and have had absolutely no flares since then....so 13 years w/o a flare.

While on Betaseron I had no issues at all---not even the side effects. When I was on both Tecfidera and then Plegridy I developed allergic reactions to both of them within 2 years of starting them and got off of them quickly. I am now 60 years old and I have an appointment with my neuro in a few weeks and we're going to discuss what I want to do next. Part of me is concerned that if I elect to go off of any DMT then I am running a huge unknown risk. Part of me says that if I truly have had MS for longer than I know and that I've not had any flares for the past many years then chances remain pretty good that I'll continue in this way. I have to say that I'm not much of a gambler but I really don't want to continue to 'try out' different drugs and continue to have reactions and then get off them only to try another one. Nor do I want to stop taking something that is holding progression at bay. I'll continue to think about this and I'll report back on my appointment if there's anything worth sharing from my neuro.

[MyGirlsMom]

I do not have study information, but can tell you my personal experience.

I was diagnosed in 2006 (age 52) after having symptoms of numb and heavy feet along with some "odd" neurological responses for a year or so. I received a diagnosis quickly and was on Rebif for 6 years with no symptom or MRI changes. In 2012 I chose to discontinue Rebif, hoping my MS had "burned out.". I was off Rebif for 6 years when, at the age of 63, I had a wicked relapse with an MRI that showed multiple new, active lesions and old lesions that had not been obvious before.

Despite steroids and physical and occupational therapy, within 4 months I had to leave a full time job and go on short term disability, progressing to long term disability and finally Social Security disability. I went back on Rebif 2 months after the exacerbation. I now have hand controls for my car, a rollator, mobility scooter and stair chair lift.

Whatever clinical studies might demonstrate, make the DMD decision you can live with. I am now left second-guessing my decision to stop Rebif in 2012. Good luck with whatever you decide!

Canary, this is my story too and consequently I will be going on a DMT in August (still determining which one but leaning to Ocvrevus).

I was dx in 2009 at 47 although had MS symptoms since early 30s for sure. Took Copaxone until about 2 years ago and then had flares for the past year. I am beyond discouraged and therefore, despite being a lee cautious person, I am definitely going to take something.

The challenge is now that I am older it is not only harder to push through the flares but I don’t bounce back as fast either. I had the best job ever! And had to go on STD and no waiting for approval of LTD and SSDI. This is not where I wanted to be at 57 yrs young. 😉

Btw, I did call to be on that study with Dr Corboy but it required me to stay on Copaxone. That was impossible as I couldn’t seem to find injection sites anymore.

Again, these are just my opinions based on my experience only!

[MyGirlsMom]

Here are some relative thoughts posted a few years ago by a brilliant doctor...

https://multiple-sclerosis-research....ing-curing-ms/

."

Myoak, this post from you definite describes me. I am sure my first “known” flare was when I was 31 and didn’t get diagnosed until 47...that is 16 years of flares with no diagnosis or therapies. Ten years ago I wasn’t as convinced that a DMT was needed....even a year ago, I thought I could manage it through diet and exercise. But here I am...definitely going on a therapy in August. Thanks for sharing the link!!

[ru4cats]

Myoak,

I've said it once, but I'll say it again. You and your continuing quest for knowledge of all things MS are a true gift to this forum and all those who wish to understand this chronic disease. Every time I read one of your posts I come away with new insights.
Thanks again. Your wife is truly blessed to have you fighting for her.

Kris

[Mamabug]

I'm 57. I haven't had a flare since 2014, but I seemed to be getting worse for a year or two. Around 2016, I asked my MS specialist about her opinion about going off meds at some point.

She said she has taken patients off sometimes. She usually waits until they are free of flares for at least 5 years.

Last year, I had an MRI. It showed a couple of new spots since my last one. She wants to wait until an MRI shows no new activity.

[Myoak]

First,

Ms Kris, thank you so much for your very kind expressions! I did not neglect to respond initially. What I did was sign in, wrote a response and had the whole darn thing disappear when I hit "submit reply". Frustrating, because I spent a great deal of time on it and the "proof" it was gone.

Essentially, I wanted to encourage those having good success on Tysabri to stay the course. Not that Ocrevus is bad; Ocrevus is good, it is very good. It is highly effective against MS. Having used both DMTs in this household, IMO, Tysabri is slightly better, especially regarding fatigue. If fatigue matters, you may want to stick with TY. Of course, one can take adderall for fatigue, as many do.

Also, for those having good success on Tysabri or having good success any DMT, stopping altogether is not wise, IMO.

Absolutely, there are legitimate reasons to stop taking a DMT, especially if someone begins experiencing problems. And, some of the less effective DMTs, I have always found questionable balancing risk and reward. The side effects may be making someone as sick as the MS, IN SOME CASES.

That said, I believe in time research will prove those who STOPPED taking a DMT that they were having notable success taking, lead to a poorer QOL and more MS activity than those who continued taking their effective DMT. JMHG! Just My Humble Guess, but one I have put thought and study into.

Don't let Tysabri lure you into thinking you don't have MS, you have mild MS, or MS died out because of age. I believe that is wrong thinking, Kris.

MS changes. It often starts out as relapse and remit then slowly transitions out of that to a more progressive form. It does not mean MS is burning out. It means the patient is burning out; burning out neurological reserve.

Clearly, and I do mean clearly, as demonstrated in trials, Tysabri preserves upper arm function in progressive MS.

I believe knowing this teaches us something valuable about MS and DMTs... that someone having success on a DMT will continue and that success will become apparent if we measure success more accurately than in the past or presently, for that matter.

Not only DMTs but there are a number of things that, if you are having success against MS doing, keep doing them! If you are fortunate enough to have found supplements, diet, life style, meds, or whatever working well for you against MS, stick with your success!

MS burnout? MS may be down but when is it ever gone? What burned out heavyweight cannot get off the mat and knock someone out who isn't fighting?

IMO, in the not too distant future, MS burnout will be viewed as nonsense, medically speaking. I really believe so.