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Multiple Sclerosis News for Primary Progressive MS

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

 

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

Ocrevus is approved by the FDA for both relapsing and primary progressive MS. Clinical proof exists that Ocrevus reduces the progression of clinical disability. Compared with the placebo group, 24 percent reduction was observed.

Because all of the approved disease modifying therapies work primarily by reducing inflammation in the central nervous system they do not work as well where there is nerve degeneration; rather than inflammation.

Additionally, people with PPMS and their health care team may find limited success managing the disease in the following ways:

  • 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 may for a time help with activity, safety, independence, and an enhanced quality of life.

There is no way to predict this ahead of time, and the primary challenge may continue to be with walking.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Patriette from Las Vegas, NV on April 26, 2012:

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 on January 18, 2012:

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

Sunnie

Jen's Solitude (author) from Delaware on August 27, 2011:

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 on August 25, 2011:

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 (author) from Delaware on February 22, 2011:

Thank you so much for your kind words!

funky23 from Deutschland on February 22, 2011:

your writing is awesome

Jen's Solitude (author) from Delaware on September 30, 2010:

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! :)

Glen Nunes from Cape Cod, USA on September 30, 2010:

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 (author) from Delaware on August 01, 2010:

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

Darcdin on July 31, 2010:

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

Jen's Solitude (author) from Delaware on May 23, 2010:

Thank you Dr irum!

Dr irum on May 23, 2010:

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

Jen's Solitude (author) from Delaware on May 14, 2010:

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

Paradise7 from Upstate New York on May 14, 2010:

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 (author) from Delaware on May 14, 2010:

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 from Kingston-Upon-Hull on May 14, 2010:

Keep fighting Jen

fishtiger58 from Momence, Illinois on May 14, 2010:

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 (author) from Delaware on May 14, 2010:

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.

Gloria Siess from Wrightwood, California on May 13, 2010:

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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