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

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borders.com.au

 

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.

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. 

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19 comments

Patriette profile image

Patriette 4 years ago from Las Vegas, NV

Hi Jen,

I'd have to agree with Darcdin's post! That said, I'm going to keep this article to help my family and friends better understand my MS. Voting up and useful. Thanks, Jen.


Sunnie Day 4 years ago

Wonderful, informational hub..Wishing you the very best Jen.

Sunnie


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

Richard it is an honor to meet you. Thanks so much for dropping in. Slowly but surely there seems to be more clinical trials for primary progressive MS. I hope to have more examples to post about in the future as this type of MS is very under-served, in my opinion. Please take care!


Richard 5 years ago

I have had MS since about 1981 and was diagnosed with

PPMS about 21 years ago.Before that it was called chronic MS and that was my first diagnosis back in 1983.

I have had long periods of my life where I needed a wheelchair or scooter.

I took several medications but started with betaseron in 1993.None have done me any good.


Jen's Solitude profile image

Jen's Solitude 5 years ago from Delaware Author

Thank you so much for your kind words!


funky23 5 years ago from Deutschland

your writing is awesome


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Hi GD, it is very nice to meet you, thanks for leaving a comment. I often think of PPMS and what if anything will assist your unique group. The newest drug, the oral one is apparently being tested on PPMS, I hope it turns out to be helpful. Also Ampyra is available for PPMSers as well. Don't know if these are helpful in your situation, but thought I should spread the word and allow you to do your own research.

It took me a long time to finally get to my 100th hub. Writing when MS isn't bothering us is a fact of life that sometimes gets in the way, as you are well aware.

I will travel to your profile page next, keep on just doing the best you can, that will do just fine! :)


GD Nunes profile image

GD Nunes 6 years ago from Cape Cod, USA

Thanks for the article on Primary Progressive MS. I have PPMS, and it can be frustrating when my friends and family tell me about an MS breakthrough they've read about, and I have to explain to them that the new drug is for the "other" type of MS (Relapsing-Remitting). But they care enough to think of me, and that's important, and maybe one of these days they really will read about a breakthrough for PPMS. Till then, one day at a time...

Also, congrats on publishing so many hubs! I've been a member for 10 months, and I've only published 17 hubs. I don't see my output speeding up any time soon. That's as fast as I can go. But I'll keep plugging away.

Keep up the good writing Jen!


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

You are too kind Darcdin, but thanks so much for the compliment!


Darcdin 6 years ago

This is one of the best articles I have seen for progressive MS. Great work Jen.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Thank you Dr irum!


Dr irum profile image

Dr irum 6 years ago

Its really amazing writing on Multiple sclerosis ,Thanks to share with us .


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

Paradise, that means so much to me, thanks for your kind words.


Paradise7 profile image

Paradise7 6 years ago from Upstate New York

That is serious news. It's a very hard illness to bear, very debilitating, and I admire so much your strength and truth in putting the facts in front of the public, Jen.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

fishtiger and ethel, great to see you both. When I want to feel sorry for myself all I have to do is think about those with primary progressive MS, amazing how that awareness can snap you out of self-pity mode. (smile)


ethel smith profile image

ethel smith 6 years ago from Kingston-Upon-Hull

Keep fighting Jen


fishtiger58 profile image

fishtiger58 6 years ago from Momence, Illinois

Thankfully they are coming up with more drugs that may help some. In my great grandmothers day there wasn't much. Hang in the Jen.


Jen's Solitude profile image

Jen's Solitude 6 years ago from Delaware Author

GarnetBird, depression does accompany MS, even more so with progressive MS which can easy make a bad situation seem nearly impossible to deal with. Thanks for weighing in about this.


GarnetBird profile image

GarnetBird 6 years ago from Northern California

My closest friend since 4th grade has pretty severe MS with multiple brain lesions. It causes her a lot of terrible depression and mood swings, not to mention her gait is so unsteady she has to use a walker at all times. GOOD hub!

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