Multiple Sclerosis News for Primary Progressive MS (PPMS)
I think the most difficult news to share, is the news for those who find themselves with the most disabling form of MS, the primary progressive sufferers. Unfortunately, this group may be the most under-served of the MS Community simply because progressive MS is so resistant to many of the therapies available for less severe forms of the disease. Still, what is available will be posted in this article in the hopes that the information gathered will continue to accumulate and give reliable alternatives for this most special group of people
One Book Cover About PPMS
This tribute is long overdo considering the respect and admiration I have for those who share the hardest and most difficult form of MS, primary progressive. Celebrities such as Annette Funicello and Richard Pryor received attention obviously because they are well-known names. However there are others who struggle everyday with this most crippling form of MS who receive no recognition and yet courageously face each day with a renewed since of purpose and determination. It is to all of you, especially those who are members of the Hubpages Community that I express my acknowledgment of your suffering and my gratitude for your ability to endure. You are all fine examples to follow.
The Indomitable Spirit of People With Primary Progressive MS
- Multiple Sclerosis And What It Is Like To Debilitate
Our very own Harvey Stelman has written a series of articles on what it is like to debilitate. Check out his experience and advice, I'm sure you will be glad you did. Harvey it is great to know you are here and you have certainly set the bar high!
- Permanent Progressive MS (Multiple Sclerosis) Challenges - One Victim's Dated View
Proud to call Russ a friend and think you will find his experience with Progressive MS as inspiring as I have. Please give him a read and let him know he is valued. Thanks for your story and friendship Russ.
- An awkwardly funny play | Arts & Entertainment | Coast Reporter, Sunshine Coast, BC
True Life Experience of a nurse diagnosed with PPMS and how she makes the best of it by being funny.
Primary Progressive MS Defined - The National MS Society
PPMS is a disease course that is characterized by steady worsening of neurological functioning, without any distinct relapses (also called attacks or exacerbations) or periods of remission. A person’s rate of progression may vary over time — with occasional plateaus or temporary improvements — but the progression is continuous.
The Exception to the General Rule
Even when a person has PPMS, some physicians feel that it worth while trying a disease-modifying therapy for a period of time to see if it reduces disease activity. Even though none of the disease-modifying therapies have been shown to be effective in PPMS, they feel that these medication will not do any harm and may turn out to provide some benefit. Your best bet is to have a follow-up discussion with your doctor to ask about your disease course and his rationale for prescribing a disease-modifying therapy at this time.
Drugs/Available Treatment Options
Ampyra, a drug approved by the FDA, is for the benefit of all types of MS. It is said to be an aid in walking and mobilitiy issues which is especially a problem with those who are primary progressive.
Although technically, doctors can prescribe any type of drug deemed potentially helpful to people with PPMS it pains me to direct attention to the following point made by the MS Society:
"It is important to take into consideration, however, that your insurance company may not be willing to pay for the medication if it is being used off-label."
The MS Society’s Official Word
At the present time, there are no medications that have been approved by the U.S. Food and Drug Administration (FDA) for the treatment of PPMS. Because all of the approved diseasemodifying therapies work primarily by reducing inflammation in the central nervous system they do not work as well when the disease course is characterized by nerve degeneration rather than inflammation.
Even without an approved disease-modifying therapy, however, there is a lot that people with PPMS and their health care team can do to manage the disease, including:
- Managing the symptoms
- Enhancing mobility and promoting safety and independence
- Promoting overall health and wellness
- Promoting emotional well-being and quality of life
People with PPMS tend to have fewer brain lesions (also called plaques) than people with relapsing MS, and the lesions tend to contain fewer inflammatory cells. The available disease-modifying medications are not effective in slowing the neural damage that occurs in PPMS.
In other words, if there were more swelling or inflammation and less damage to the nerve fibers themselves, PPMS would respond to the DMD (disease-modifying drugs) but since that is not the case, people with PPMS are not extended treatment options common to relapsing/remitting and secondary progressive MS.
In the Absence of Pills - Symptom Management
The MS Society is also quick to point out that spinal cord lesions (also called plaques) are more common than brain lesions in PPMS, problems with walking are very common, but other symptoms may occur as well.
It may not be possible to stop the progression from occurring, but ongoing symptom management and rehabilitation strategies can help you stay active, maintain your safety and independence, and enhance your quality of life.
There is no way to predict this ahead of time, and your primary challenge may continue to be with walking.
To the far right of the page you will see "User's ratings" click on that portion.
One More Resource of Note
52 Presciptions Examined and Rated
I have included a web site which claims to have rated all 52 medications available to treat MS, as to whether they have been of help to those with Primary Progressive MS. These would be considered off-label. But if you would like to check out the chart please click on here and you will be taken to Revolutionhealth.com the Multiple sclerosis - Primary progressive (PPMS) treatments - section.
Until More Help Arrives
Hopefully sooner than later, there will be more available for those who suffer from PPMS than the trial and error system now in place.
If anyone knows of any thing else that can be included in this article, please feel free to leave a comment so that I can update the findings.
I'm sorry the pick'ins are so slim right now, and will be very happy to record it when things begin to change.