Stable Disease Does Not Mean Symptom Free

Recently I was talking to a nurse; not my nurse, but someone who came to the house to help my mother with some new medication. During our conversation, I mentioned that I have MS and RA. She asked if I use any medication to treat my diseases. I answered in the affirmative and told her that I use rituximab (Rituxan) and methotrexate; treatments prescribed for RA which also help my MS.

Side note: There are a number of people with MS who successfully use rituximab off-label because of its efficacy. Ocrelizumab (Ocrevus) is a humanized version of rituximab for which the MS community is eagerly waiting FDA approval in December. Both rituximab and ocrelizumab are infusion therapies that must be given in an infusion center or doctor’s office.

Stable for years

The home nurse asked if I thought that treatment was working well. My response was another enthusiastic yes. I’ve been stable for years now, with the exception of the mild relapse that rudely broke my 50-month relapse-free streak earlier this year.

“So you don’t have any symptoms?” the nurse asked interestedly.

I still have symptoms!

Oh no, I absolutely still have symptoms! But I haven’t had any new lesions since switching treatments in 2009. My latest MRI reports from last week basically sound like a broken record:

Spine: Stable demyelinating disease. No new/enhancing cervical cord lesions are identified.

Brain: There has been no significant change. No intracranial abnormality is detected.

When I mentioned the mild relapse to the nurse, she expressed a lot of sympathy. No sympathy is needed though. If you calculate my personal annualized relapse rate from 2011 to 2016, it’s low at 0.3-0.4 relapses/year. That’s a significant change in disease activity from the number of big relapses I had previously from which I never returned to baseline and questioning whether I might be transitioning to secondary progressive MS at the time we were trying monthly pulse steroids in 2010.

MRIs don’t always correlate to relapses or symptoms

But MRIs do not always correlate to relapses or symptoms, as Laura wrote in a prior article. Some of my MS symptoms which are always present to some extent include sensory changes, spasticity, hyperacusis, inability to regulate body temperature, heat sensitivity, fatigue (mental and physical), muscle weakness, impaired balance, occasional urinary urgency, depression, and anxiety.

No symptoms would seem like a cure

If I didn’t have any MS symptoms at all, it would almost seem like “a cure.” That would be cool but not something I expect with any treatment.

I am very thankful, however, to have stayed about the same with my MS for years. In fact, my condition has actually gotten a bit better over time, although I still have symptoms. I continue to experience disability and depending upon what’s going on score at least 2.5 on the EDSS disability scale, but I’m still able to get out and do things like learn how to bike.

MS never really goes away

It’s important to remember that stable does not mean no more MS. Just because your MS is stable, or you demonstrate “no evidence of disease activity,” it doesn’t mean that your MS has gone away. That’s something that people need to know.

MS never really goes away, but it can give you a break every once in awhile and stay the same. Stable in my book is a great word. I’m happy to be stable and thankful to be doing well.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (10)
  • Nobu
    6 months ago

    I am considered Relapsing-Remitting – and that is great because I continue to have a med that seems to work well for me, keeping me stable. My main MS lesion is in my T-11 spine location and I have some old lesions in my brain, but my main issue is walking, I have little issue with cognition. I think MS symptoms need to look at both physical and cognitive, they are all part of the same condition.

  • Nobu
    6 months ago

    Lisa – I have been stable too, for at least 8 or 9 years. I have used crutches for several years now, but have not changed except for better, when I am doing my exercises on a regular basis. I am currently on Texfidera going into my sixth year. I am always surprised how little some medical people don’t understand stable – it means “the same”, not – no pain, or issues. It is just that they are the same issues, the same pain, of the same intensity on a daily basis. Thankfully, I have a great MS Neuro and she sees the same thing I do, stable.

  • Learner2010
    2 years ago

    Thank you for this article. I’ve been diagnosed with MS for 28yrs and one thing that keeps changing is the medical community’s use of terms like Relapsing-remitting, Secondary-progressive, Relapse, Flare, and even their scales of disability.

    The medical definition of all these things are only important insofar as they give the patient access to the best treatment available. Otherwise, it is all a distraction from your own “best case” scenario and how you see and experience the world. A relapsing patient might be having a terrible time with attacks and losing function, then gaining some back. A secondary patient may, after losing some abilities, may find a treatment that prevents much further loss and remain stable for decades.

    The main thing I wish I’d been told (or told more often!) is that when you have an attack, take it seriously and get steroid injections. In my 30’s, as I was super busy and mostly trying to ignore what were likely MS flares I didn’t go in for steroids. It was too easy to blame symptoms on other causes or the symptoms subsided soon enough. I also hated recovering from steroid infusions. Looking back now I realize I may have prevented much of my current physical limitations by being more aggressive about treatment, learning stress-reduction much sooner, and treating food as medicine instead of emotional pacifier.

  • chalknpens
    2 years ago

    I haven’t heard the word stable, but have been told my rrms is benign, because i don’t have mobility issues but rather have cognitive and emotional issues. Have others heard this term used for rrms? I don’t do the daily injections anymore … did that for four years, depression worsened, cognitive symptoms worsened. Learned much later that DMDs ought not be prescribed for rrms that is considered ‘benign’.

  • jennyb
    2 years ago

    I take Leflunomide for psoritic arthritis and MS, and it seems to working well. I recently needed a round of predisone for the PsA and that doesn’t hurt the MS either. Leflunomide is just a half a molecule away from Teriflunomide, which is expensive and prescibed for MS. I seem to have forgotten how to spell……

  • Lori
    2 years ago

    Thanks for writing about stable MS, and I wish it meant the symptoms went away. I have been “stable” since my first bout where I was diagnosed in 2001, but have been treated for ALL and in remission now thank goodness, but the numbness, neuropathy in my feet has really done a number on my balance problems, but my plaques on my brain are ” stable”. So every time I get a report back about my MRI with no changes it makes me feel like people will start to think I am in some way making this up. Anyway thanks again.

  • Nobu
    2 years ago

    Lisa – You are so right about being stable, and I am glad you gave the nurse more information on what that means with MS. I have been stable for quite some time too – more than 5 years. But, like you, I have the same symptoms everyday – use crutches to walk, have right flank pain, fatigue, and the list goes on. However, being static is better than progressing any day. Having read about how you feel that rituximab has benefitted both your RA and MS, I am looking forward to hearing more about Ocrelizumab being approved for MS. take care, and keep having static and even better days!

  • Lisa Emrich moderator author
    2 years ago

    Hi Nobu,
    Thanks for reading and commenting! Absolutely, being static is before than progressing. I like that word — static. Even though I personally am unlikely to switch medications, I too have been waiting for FDA news of ocrelizumab approval. But the FDA just announced yesterday that they are moving back their decision deadline to March 2017. It will be another three months before it can be made officially an MS drug. Hopefully that news will be positive when it is released.
    Lisa

  • Mybaby1020
    2 years ago

    This is a great article! It made my fiancée and I feel hopeful! We are currently looking for a different medication for her MS, due to a horrible side effect from the one she is currently taking. What is the regiment for this infusion? And do you have to have RA, in order to take methotrexate? Any advice would be great. Thank you in advance!!

  • Lisa Emrich moderator author
    2 years ago

    Hi Mybaby1020,

    Thanks for the comment. I’m glad that the article has helped to make you and your fiancee feel more hopeful.

    The infusion therapy I use is rituximab. It is approved for use in RA and lymphoma; and it is frequently used off-label for other autoimmune diseases. Some neurologists have been using it for MS for years.

    The good news is that a very similar medication is expected to be approved for use in MS by the end of this month. That drug is ocrelizumab. Both medications target a specific type of B-cell.

    Methotrexate is used for many different conditions besides RA. Years ago when my neurologist was considering adding a medication on top of Copaxone because I was having breakthrough disease activity, he talked about medications like Imuran. But I was already on methotrexate which served the same add-on purpose.

    With so many disease-modifying therapy choices (14 at the moment), a neurologist may not consider add-on therapy before outright switching to a different medication specifically approved for MS. But it is worth asking the questions about different options with the doctor.

    Best wishes to you both,
    Lisa

  • Poll