RRMS Vs. SPMS

[krystine]

I am wondering if anyone has moved from RRMS to SPMS and how their doctor knew that. I have had RRMS for 14 years now and am unsure how to tell if I have progressed to SPMS. My doc says he thinks I still have RRMS and wants to keep me on meds so he will keep me at that.

I dont really know how I would know. Are there still meds for you when you switch? I am still on Copaxone and having problems with it and am wondering if I should bother looking into one of the oral meds or not.

Confused Christine

[Marco]

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.
• Benfits 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.

[zilphia01]

really???

so lack of symptoms means possible progression to spms? Not being ill means you are more ill?

This disease continues to baffle me.

karen

[marti]

I'm dealing with this right now also. The Copaxone started giving me problems such as fevers and chills and terrible shivering. My neuro took me off Copaxone and did NOT suggest anything else. I am 64 years old and was dx in 2001. She feels that the meds are not doing me much good anymore. But... I am walking... relatively healthy, although I now have several autoimmune diseases.

I really never know for sure which symptoms are MS and which are from the other problems that I've developed. I even made my neuro sit down and convince me I really do have MS. I lived in denial for years. She did prove it to me without a doubt. But, she did not reclassify my MS. At one time she thought I had Progressive-Relapsing. She's not sure. Probably a lot of doctors are not sure about this disease.

[22cyclist]

I was diagnosed with SPMS from RRMS this year after 10 years with RRMS. I am 43. I did experience less relapses, and also have more symptoms from past relapses that did not ever go away (weakness) completely.

My doc based mine on evidence of my having gone through all of my entry-level medications, and having been on Tysabri for 2 years with no real relapses that I had converted into SPMS. I would, and still do get random weakness, and paralysis.

Tysabri has been used in SPMS so that is a big help for me. Talk with your provider if you don't feel like your medication is the right fit for you.

Take care
Lisa