Should one stoping MS meds after a certain age?

[heyyou]

I am now over 65, had my first symptoms at 21. Diagnosed at 37. I've been on Copaxone (soon to switch to the genetic) for 17 years. I've heard that some people can stop their meds late in life and do fine. Has anyone else heard that or know of some reliable sources that show research or logic about the subject.
Thanks for your help.

[Mamabug]

I've heard that MS can "burn itself out" as we age. I've not read anything reliable to support that -- only comments on message boards.

However, I did, once, ask my MS Specialist about SPMS, and what the experts were currently saying, regarding how many years before RRMS will progress to that.

Her answer was that, sometimes, it doesn't. She didn't use the term "burn itself out"; I don't remember exactly how she worded it. But, she did say that, sometimes, when people reach their 50's or 60's, their MS stops having relapses AND stops progressing. She said that she has, successfully, taken some of her patients off of DMD's at that point.

I'm currently age 53. I have not had a relapse since 2014. She said that, if I go for 5 years without a relapse, she'd consider taking me off Copaxone.

[KoKo]

I am now over 65, had my first symptoms at 21. Diagnosed at 37. I've been on Copaxone (soon to switch to the genetic) for 17 years. I've heard that some people can stop their meds late in life and do fine. Has anyone else heard that or know of some reliable sources that show research or logic about the subject.
Thanks for your help.

This is info from the NIH (National Institute of Health) titled Treatment Strategies for Multiple Sclerosis: When to Start, When to Change, When to Stop?

http://www.ncbi.nlm.nih.gov/pmc/arti...MC4517331/#B97

If you scroll down to the CONCLUSION section, it states that "Based on current evidence and good clinical practice principles, we suggest the following."

"When to stop treatment for MS?"

"DMT must be stopped in case a serious adverse event potentially related to the drug occur or is likely to occur, in patients becoming pregnant, and in subjects who are not adherent to treatment.

DMT should be also discontinued in patients with confirmed disability progression over one year in the absence of relapses and new/enhancing lesions on MRI; these subjects have progressive MS, which does not respond to any DMTs, and priority should be given to symptomatic treatment, physical therapy, and management of disability."

I am personally not on DMT, but from reading posts here over the years, the decision is usually up to each individual neuro and MS patient.

[Marco]

I agree with others. MS doesn't burn itself out, but may change from RRMS to SPMS. The transition can be prolonged where relapses slow down and eventually fade away entirely. So the RRMS stage is primarily inflammatory in nature and the second stage being neurodegenerative. Our MS medications work far better in the inflammatory stage than the neurodegenerative stage so overtime SPMS patients will get diminishing returns.

Ocrelizumab looks like it will be the first approved MS medication for progressive patients. Rituximab is similar to ocrelizumab and is already available off-label. Being SPMS, I am trying to move from traditional MS treatments to rituximab. I will do what I can to preserve my brain and quality of life and still believe these medications do more good than harm (on average).


Here's a snippet I wrote earlier on the transition between RRMS and SPMS. Again, not all RRMS patients transfer to SPMS.


Just like with diagnosing MS, some neurologists are more aggressive than others when suggesting a patient has transitioned from RRMS to SPMS. Unfortunately, the MS phenotypes sometimes cause more confusion than they are worth. There is no clinical, biological or objective measure used to move a patient from RRMS to SPMS. The MedHelp article used the term "somewhat subjective" to describe the assessment. Neurologists do not universally use the same scale; so while one neurologist may assess RRMS another might suggest SPMS. This is caused because different neurologist use and weigh criteria differently and because defining SPMS has been a moving target. Some of the variance can be explained by different schools of thoughts, differences in education, governing boards, length of time practicing, etc. The simple truth is different neurologists are using different measurements to diagnose the same condition.

The general premise is that over time more and more RRMS patients will transition into SPMS patients. These patients will basically have two stages of the disease. The first stage is largely depicted by inflammation, with regular periods of relapses and remissions. During this inflammation stage, improvement during periods of remission is expected and often complete. Most MS drugs are more effective during this predominantly inflammatory stage. The increased use of disease-modifying therapies has also had an impact on the RRMS to SPMS transition. DMTs are proving to alter the natural history of MS and even delaying the onset of SPMS. The second stage is characterized by less inflammation, fewer flare ups, and a steady worsening of symptoms and disability. In this stage, any symptom improvement is generally incomplete to and may not even be apparent. Normally, first-line drug therapies are abandoned for second-line drugs such as Tysabri, Rituximab, Novantrone, Methotrexate, etc. There is no exact transition point from RRMS to SPMS, so a variety of evaluation criteria is used. Some of the SPMS criteria used by neurologists include:

• EDSS/disability scale
• Medical history
• Relapse rate (especially the absence of relapses)
• Incomplete remissions or symptom improvement
• Gradual increase in disability or symptoms
• MRI evidence - accumulation of black holes, brain atrophy, etc.
• Benefits of medication
• The length of time diagnosed
• Age of the patient
• Insurance issues
• Patient feedback (I don't ever seem to improve.)

How the above and other criteria are applied are at the discretion of the neurologist. One neurologist may have a minimum EDSS score or minimum age for patients categorized as SPMS. The longer a patient has been diagnosed with MS, the easier it becomes to diagnose SPMS. In some cases, a patient may go move into the SPMS category before they were ever diagnosed with MS. I know I was diagnosed 20+ years after my initial MS symptoms. Your neurologist will undoubtedly have their own criteria for diagnosing SPMS.

Examples of how criteria may be applied:
• A 12-year old, may be diagnosed with MS, but a neurologist might otherwise be hard-pressed to diagnose SPMS due to their young age.
• A patient's MS has been stable on drug X for 12 years. Then the patient begins to have disease progression. Some neurologists will consider that to be evidence the patient is leaving RRMS and entering SPMS.
• A patient has had bi-annual relapses for many years. Then for a period of 4 years, no relapses are observed.
• A patient's insurance plan does not cover medications for SPMS patients.


I would certainly ask my doctor why did they transfer me from RRMS to SPMS and how will this change my treatment plan? Changing MS types could be considered one of the possible major MS milestones. As with all medical milestones, a second opinion might be advisable. For others the SPMS label may seem like a better fit and actually provide some level of comfort.

I hope this helps and I wish you well.

[jreagan70]

In another thread, someone posted this link to a webinar from the Rocky Mountain MS Center: https://www.youtube.com/watch?list=U...&v=Mzvyut29dsg. At the 14:49 point in the video, the subject of aging and DMDs is discussed.

[heyyou]

I very much appreciate all the info and opinions/guesses you have given. Making decisions about ones path in life is a little scary sometimes. It's sort of like wanting to see what life is like on the other side of river, and knowing that maybe once crossed one may not be able to return to the same safe spot.

Well, it's about the journey right.... I'll let you know what I see from the other side if I go.
Thanks

[marti]

I don't know about SHOULD stop taking meds, but I DID stop a few years ago when I was having a lot of weird side effects. I was one who was told that my MS had "burned itself out". But my symptoms continue to get worse and I have developed several other autoimmune diseases and other "aging" problems.

My neuro believes in "doing no harm" so she never started me on any of the newer meds since I seem to be sensitive to a lot of drugs. MS is not in her field of expertise, but she is a neurologist and knows enough about the disease. At least, I think she knows what she's talking about. I've never been too sure. Not too sure about any of them.

[palmtree]

I might stop MS meds when I'm really old. But since "really old" is always 15 years older than I am, that day may never come.

[kim-mastro]

Stopping MS DMD when old

I've had MS since 1978 and I just started Copaxone a year and a half ago. Didn't really want to but family members were concerned that I wasn't getting over my last flare. It's helped my MS "level out" but I'm getting really tired of the bruising and trying to find an unbruised place to inject. I would love to stop long enough to become bruise-free! I'm almost 62 and feeling older every day!

[Wonderdog lady]

I've had MS since 1978 and I just started Copaxone a year and a half ago. Didn't really want to but family members were concerned that I wasn't getting over my last flare. It's helped my MS "level out" but I'm getting really tired of the bruising and trying to find an unbruised place to inject. I would love to stop long enough to become bruise-free! I'm almost 62 and feeling older every day!

Ahhh Kim I feel for ya! How come you aren't going for oral meds? I was on Copaxone three + years with same results. Closing n on 63 and been Copaxone free for about five years now. Thought my arms were bruise and fat breakdown free til I caught sight of them the other night Always tried to save the back of my arms and sacrificing my stomach and butt

May we all be pin cushion free!

[kim-mastro]

The Human Pincushion

Hi Wonderdog Lady! I was put on Copaxone by my Neuro a year and a half ago and it seems like it's the most side-effect-free. I guess I can put up with the bruising! I was told that the insurance co. wants injectables to be tried first. And Copaxone seems to be working. I didn't have to have an MRI this year!!!