Post here re progressive MS

A forum to talk about the general challenges of daily life with MS.
Post Reply
User avatar
jimmylegs
Volunteer Moderator
Posts: 11984
Joined: Sat Mar 11, 2006 3:00 pm

Post here re progressive MS

Post by jimmylegs » Wed Jul 10, 2019 11:19 am

Risk Factors Associated with the Onset of Relapsing-Remitting and Primary Progressive Multiple Sclerosis: A Systematic Review (2015)
https://www.hindawi.com/journals/bmri/2015/817238/abs/
"Despite the vast literature examining risk factors for the development of MS, relatively few studies reported findings by disease course. This review exposes a gap in our understanding of the risk factors associated with the onset of PPMS, our current knowledge being predominated by relapsing-onset MS."

Research and related forum discussion topics can seem pretty thin on the ground. Use this topic to post relevant research and experiences related to progressive MS.

results from a forum search specifying progressive multiple sclerosis:
https://bit.ly/2JrGpa0
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
jimmylegs
Volunteer Moderator
Posts: 11984
Joined: Sat Mar 11, 2006 3:00 pm

Re: Post here re progressive MS

Post by jimmylegs » Wed Jul 10, 2019 11:21 am

found this:
  • Brain atrophy and disability worsening in primary progressive multiple sclerosis: insights from the INFORMS study (2019)
    https://onlinelibrary.wiley.com/doi/ful ... 2/acn3.534

    Abstract
    Objective
    To investigate the relationship between brain volume and disability worsening over ≥3 years in the natural history of primary progressive multiple sclerosis using data from the placebo group of the INFORMS trial (n = 487; clinicaltrials.gov NCT00731692).

    Methods
    Magnetic resonance imaging scans were collected annually. Brain volume loss was determined using SIENA. Patients were stratified by baseline normalized brain volume after adjusting for demographic and disease‐burden covariates.

    Results
    Baseline normalized brain volume was predictive of disability worsening: Risk of 3‐month confirmed disability progression was reduced by 36% for high versus low baseline normalized brain volume (Cox's model hazard ratio 0.64, P = 0.0339; log‐rank test: P = 0.0297). Moreover, on‐study brain volume loss was significantly associated with disability worsening (P = 0.012) and was evident in patients with or without new lesions or relapses. Brain volume loss depended significantly on baseline T2 lesion volume (P < 0.0001). Despite low inflammatory activity at baseline (13% of patients had gadolinium‐enhancing lesions) and throughout the study (mean 0.5 new/enlarging T2 lesions and 172 mm3 T2 lesion volume increase per year), baseline T2 lesion volume was substantial (mean 10 cm3). Lower normalized brain volume at baseline correlated with higher baseline T2 volume and older age (both P < 0.0001).

    Interpretation
    Baseline brain volume and the rate of ongoing brain atrophy are significantly associated with disability worsening in primary progressive multiple sclerosis. Brain volume loss is significantly related to baseline T2 lesion volume, but partially independent of new lesion activity, which might explain the limited efficacy of anti‐inflammatory treatment.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

User avatar
jimmylegs
Volunteer Moderator
Posts: 11984
Joined: Sat Mar 11, 2006 3:00 pm

Re: Post here re progressive MS

Post by jimmylegs » Wed Jul 10, 2019 11:30 am

and this (yikes it would be nice if assiduous self care was considered among the treatments evaluated. i want to know!)
  • Association of Initial Disease-Modifying Therapy with Later Conversion to Secondary Progressive Multiple Sclerosis (2019)
    https://research.monash.edu/en/publicat ... ater-conve

    Abstract
    Importance: Within 2 decades of onset, 80% of untreated patients with relapsing-remitting multiple sclerosis (MS) convert to a phase of irreversible disability accrual termed secondary progressive MS. The association between disease-modifying treatments (DMTs), and this conversion has rarely been studied and never using a validated definition. Objective: To determine the association between the use, the type of, and the timing of DMTs with the risk of conversion to secondary progressive MS diagnosed with a validated definition. Design, Setting, and Participants: Cohort study with prospective data from 68 neurology centers in 21 countries examining patients with relapsing-remitting MS commencing DMTs (or clinical monitoring) between 1988-2012 with minimum 4 years' follow-up. Exposures: The use, type, and timing of the following DMTs: interferon beta, glatiramer acetate, fingolimod, natalizumab, or alemtuzumab. After propensity-score matching, 1555 patients were included (last follow-up, February 14, 2017). Main Outcome and Measure: Conversion to objectively defined secondary progressive MS. Results: Of the 1555 patients, 1123 were female (mean baseline age, 35 years [SD, 10]). Patients initially treated with glatiramer acetate or interferon beta had a lower hazard of conversion to secondary progressive MS than matched untreated patients (HR, 0.71; 95% CI, 0.61-0.81; P <.001; 5-year absolute risk, 12% [49 of 407] vs 27% [58 of 213]; median follow-up, 7.6 years [IQR, 5.8-9.6]), as did fingolimod (HR, 0.37; 95% CI, 0.22-0.62; P <.001; 5-year absolute risk, 7% [6 of 85] vs 32% [56 of 174]; median follow-up, 4.5 years [IQR, 4.3-5.1]); natalizumab (HR, 0.61; 95% CI, 0.43-0.86; P =.005; 5-year absolute risk, 19% [16 of 82] vs 38% [62 of 164]; median follow-up, 4.9 years [IQR, 4.4-5.8]); and alemtuzumab (HR, 0.52; 95% CI, 0.32-0.85; P =.009; 5-year absolute risk, 10% [4 of 44] vs 25% [23 of 92]; median follow-up, 7.4 years [IQR, 6.0-8.6]). Initial treatment with fingolimod, alemtuzumab, or natalizumab was associated with a lower risk of conversion than initial treatment with glatiramer acetate or interferon beta (HR, 0.66; 95% CI, 0.44-0.99; P =.046); 5-year absolute risk, 7% [16 of 235] vs 12% [46 of 380]; median follow-up, 5.8 years [IQR, 4.7-8.0]). The probability of conversion was lower when glatiramer acetate or interferon beta was started within 5 years of disease onset vs later (HR, 0.77; 95% CI, 0.61-0.98; P =.03; 5-year absolute risk, 3% [4 of 120] vs 6% [2 of 38]; median follow-up, 13.4 years [IQR, 11-18.1]). When glatiramer acetate or interferon beta were escalated to fingolimod, alemtuzumab, or natalizumab within 5 years vs later, the HR was 0.76 (95% CI, 0.66-0.88; P <.001; 5-year absolute risk, 8% [25 of 307] vs 14% [46 of 331], median follow-up, 5.3 years [IQR], 4.6-6.1). Conclusions and Relevance: Among patients with relapsing-remitting MS, initial treatment with fingolimod, alemtuzumab, or natalizumab was associated with a lower risk of conversion to secondary progressive MS vs initial treatment with glatiramer acetate or interferon beta. These findings, considered along with these therapies' risks, may help inform decisions about DMT selection.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

robbie
Family Elder
Posts: 1229
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Post here re progressive MS

Post by robbie » Wed Jul 10, 2019 11:51 am

thought this article was good , easy to understand

Overview of Secondary Progressive Multiple Sclerosis (SPMS)
When you stop having relapses but your MS worsens
By Julie Stachowiak, PhD
Medically reviewed by Claudia Chaves, MD
Updated June 28, 2019
In This Article
Onset
Signs and Symptoms
Causes
Diagnosis
Treatment

BACK TO TOP
Maybe you've just been diagnosed with secondary progressive MS (SPMS). Or maybe you're one of the 85 percent to 90 percent of people with multiple sclerosis (MS) who are initially diagnosed with relapsing-remitting MS (RRMS) and you're not sure how your doctor will know when (or if) it transitions to secondary progressive MS (SPMS). Either way, it's good to understand how the disease can progress so you can be prepared for the future.

Onset
The majority of people with RRMS transition to SPMS, which is characterized by steadier progression of symptoms and disability with fewer or no relapses.

Before disease-modifying treatments (DMTs) became widely available, about 50 percent of people with RRMS eventually developed SPMS within 10 years and about 90 percent within 25 years. However, since the development of disease-modifying therapies, the progression to secondary MS has become less frequently noted.

You can go from having RRMS to SPMS at any time, but the process is gradual and, in most patients, slow. In fact, there's often a gray zone between RRMS and SPMS when you're moving into the progressive phase of MS but are still having occasional MS relapses.

The average age for conversion to SPMS is 40 to 49 years old.

Types of MS
Signs and Symptoms
There aren't any guidelines or criteria that define when you move from RRMS to SPMS, but here are some signs that you and your doctor may look for when determining whether this transition is occurring or has already occurred.

Your Medications Don't Work Well
Sometimes, despite your best efforts and adherence to taking your disease-modifying medication, you may begin to show increasing disability without a corresponding increase in the number of lesions on your magnetic resonance imaging (MRI) scans. This could be an indication that you're moving into SPMS.

Some people may worry that they're entering the progressive phase of MS because they stop having relapses. However, if your neurological exam is stable, this is a very good sign, as it means that your disease-modifying treatment is working.

Your Relapses Are Changing
The natural course of RRMS is for the number of relapses you have to actually decrease over time. However, the relapses that do occur may be more severe, bringing multiple symptoms, rather than just affecting one area of function.

Recovery from these relapses also tends to be incomplete, meaning that even after the acute phase of the relapse has passed, you still have some symptoms and/or disability. Additionally, you no longer respond as well to Solu-Medrol during these relapses.

Understanding MS Relapses
There's a Large Amount of Damage Seen on MRI
When you have an MRI, you and your doctor may see these results:

Greater Lesion Burden

This means that there's a greater total number of lesions, which tend to be:

Around the ventricles (the cavities in the brain that are filled with cerebrospinal fluid)
Confluent lesions, meaning small lesions forming larger ones
Concentrated in the brainstem and spinal cord
More Axonal Damage and “Black Holes"

Areas that show up as dark (hypointense) spots on a T1 scan are referred to as “black holes.” These are areas where there has been repeated inflammation, leading to complete destruction of both myelin and the axons themselves. These areas strongly correlate with disability.

Enlargement of CSF-Filled Ventricles in the Brain

This is a measure of atrophy. As there is less brain tissue, the spaces around and within the brain get bigger.

A Decrease in Gadolinium-Enhancing Lesions

Paradoxically, the number of new, active gadolinium-enhancing lesions decreases in later stages of RRMS. This is because the disease is most likely becoming more degenerative than inflammatory.

Everything You Need to Know About MRI for MS
You Have a Greater Degree of Disability
When measured by the Expanded Disability Status Scale (EDSS), people with RRMS tend to have a score of 4 or less. People with SPMS, on the other hand, usually have a score of 6 or higher, meaning that some form of assistance is needed to walk.

Your doctor will also find more abnormalities during your neurological exam. This shows that your brain can no longer compensate for the demyelination—your immune system's attacks on the myelin sheath, the protective covering around nerve fibers.


Lastly, people that develop SPMS tend to exhibit more cognitive impairment. This is most likely due to the greater degree of atrophy in the brain, which is highly correlated to cognitive dysfunction. What this really means is that your brain can't offset the damage anymore, especially where there's complete axonal (nerve fiber) destruction, resulting in black holes.

Understanding the Expanded Disability Status Scale (EDSS)
Causes
As with all types of MS, no one knows what causes SPMS. It's believed to be a combination of factors involving genetics and environmental triggers like infections, vitamin D deficiency, geography, and childhood obesity.

In terms of factors that may influence the transition from RRMS to SPMS, studies show that men appear to develop SPMS more quickly and at a younger age than women. However, both genders end up needing to use a cane at around the same age, so even though they may enter the progressive phase earlier, males don't have a worse outcome.

Smoking has also been found to increase your risk of transitioning from RRMS to SPMS.

Causes and Risk Factors of Multiple Sclerosis
Diagnosis
If you've already been diagnosed with RRMS, you probably know that the diagnostic process can be a time-consuming process as your doctor performs tests, rules out other conditions, and puts together pieces of the diagnostic puzzle.

Similarly, diagnosing SPMS requires a combination of strategies, including a thorough neurological examination and repeat MRIs. As with RRMS, there are no definitive diagnostic tests.

When it comes to diagnosing SPMS, your doctor will need to confirm two facts:

You have a history of RRMS: In order to be diagnosed with SPMS, you must have had RRMS first. For some people, confirming this history may be difficult as they may have never realized they had RRMS, thanks to subtle symptoms or even misdiagnosis.
Your MS is now in a progressive state: Once your doctor confirms your RRMS history, he or she must confirm that your disease is progressive, which means that it's gradually getting worse.
Changes in SPMS
In RRMS, inflammatory processes cause demyelination. This inflammation can be seen on your MRIs during relapses in the form of bright white spots (gadolinium-enhancing lesions).

However, in SPMS, there's less inflammation and more degeneration of gray matter and white matter, as well as spinal cord atrophy (nerve damage and loss), which can also be seen on MRI. While there's still demyelination and inflammation happening, it's more widespread.

Spinal cord atrophy is far more prominent in SPMS than it is in RRMS too, and this nerve loss can cause bowel and bladder problems, along with more difficulty walking.

While you experienced relapses in RRMS, these will become less and less frequent. Instead, you'll notice that your condition is gradually worsening. For instance, you might be able to tell that it has gotten harder to walk for the last several months, but you can't pinpoint a time when it suddenly got worse.

The Transition Period
There's often a transition period between when RRMS ends and SPMS begins. This can make it tricky to tell exactly what's going on because there's overlap between the two types. As your MS progressively worsens, you may still have an occasional relapse.

Disease Modifiers
SPMS can also be classified throughout the course of the disease as active, not active, and with or without progression.

Active: You have relapses and/or new MRI activity.
Progression: There's evidence that your MS is getting worse.
So, for instance, if your SPMS is classified as not active without progression, it's stable. If it's active without progression, you've had relapses and/or new MRI activity, but there's no evidence of worsening disability.

Like RRMS, SPMS symptoms are highly variable, and so is the rate at which it progresses. Every situation is different; some people become more disabled more quickly than others.

How Multiple Sclerosis Is Diagnosed
Treatment
Symptomatic Treatment of SPMS is similar to that of RRMS, though progressive forms of MS are notoriously more difficult to treat.

Rehabilitation Therapies
If your MS is progressing, your neurologist will likely review your rehabilitation interventions with you to see if you need any adjustments or additions. These treatments, which include physical therapy, occupational therapy, speech-language therapy, and cognitive rehabilitation, can help you function at your best and maintain your muscle strength and mobility.

Rehabilitation Therapies to Manage Your MS
Drug-Modifying Therapies
Most disease-modifying agents have not shown benefit in patients with SPMS. However, recently two drugs were approved by the FDA to be used in patients with SPMS who are still having active disease.

Mayzent (siponimod): This oral medication treats both RRMS and active SPMS. Initial studies have shown that it helps slow down disease progression at three months and six months with SPMS.
Mavenclad (cladribine): Another oral medication, this DMT is generally a second-line treatment if other DMTs aren't effective or you can't take them for some reason.
How Multiple Sclerosis Is Treated
Symptom Management
Managing your individual symptoms is an important part of your care too, especially as you transition to SPMS. Your doctor may prescribe some different or additional medications to help with MS-related symptoms such as:

Fatigue
Bowel or bladder problems
Pain
Depression
Sexual dysfunction
Muscle spasms
Walking difficulties
Cognitive impairment
Sleep disorders
Vertigo
Emotional and Psychological Symptoms in MS
A Word From Verywell
Even though the treatment for SPMS is currently suboptimal, feel reassured that there are many ongoing research studies trying to come up with treatments that will hopefully stop the progression of this disease as well as improve disability.

Until then, keep being proactive in your care by educating yourself about your disease, looking at treatment options that might work for you, and communicating openly with your doctor about your journey. This can help you live your life to the fullest and empower you to make changes as needed along the way. Our Doctor Discussion Guide below can help you start that conversation.

Multiple Sclerosis Doctor Discussion Guide
Get our printable guide for your next doctor's appointment to help you ask the right questions.
Doctor Discussion Guide Woman
DOWNLOAD PDF
Email the Guide
Send to yourself or a loved one.

Email Address
Enter your email
SEND
We will not send additional emails or share your email address. Review our privacy policy.

Was this page helpful?

Article Sources
Had ms for 27 gets harder and harder.

robbie
Family Elder
Posts: 1229
Joined: Thu Jan 27, 2005 3:00 pm
Location: Northern Ontario, Canada

Re: Post here re progressive MS

Post by robbie » Wed Jul 17, 2019 9:42 am

No interest JL, not something you really want on your mind or to talk about it's all about staying RR can't blame anyone:)
Had ms for 27 gets harder and harder.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post