Monday, May 23, 2016

Copay Assistance Programs, and More, Available to MS Patients

Copay assistance programs can be blessings for patients who cannot afford to pay for prescribed medications despite insurance coverage. Frequently, drug manufacturers are able to provide financial help directly to patients in need. To access manufacturer-sponsored programs, visit the brand website for the MS drug which you have been prescribed.
For patients who do not quality for manufacturer programs (perhaps due to insurance coverage through government programs such as Medicare), the following non-profit organizations offer additional help paying for medications. Some of these programs even offer financial help with insurance premiums and transportation costs to obtain treatment.
In general, to participate in these programs, the patient must have valid medical insurance that covers the prescribed medication, which in turn must be included on the program formulary; and the patient must meet annual household income criteria established by each program.

  • Good Days
  • The Assistance Fund
  • Healthwell Foundation
  • Patient Access Network
  • Patient Services, Inc
  • Caring Voices Coalition
  • Patient Advocate Foundation

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7 Assistance Programs MS Patients Need to Know

Relapse-Free No More

My journey with MS has had some significant ups and downs. Some of the downs include blindness, complete loss of use of two fingers on my left hand (which is devastating to a classically-trained pianist and teacher), weak arms and legs, all over numbness, impaired balance, fatigue, spasticity, anxiety, and depression.
I’ve been enjoying more of the ups in recent years; really since I switched medication to rituximab (a monoclonal antibody therapy used for RA, lymphoma, and other autoimmune diseases, which should be released in a new form and approved for MS sometime in the next year as ocrelizumab).
After switching medications from Copaxone to Rituxan I began to experience actual improvement in symptoms over time. Functions got better and relapses more infrequent. In fact, I hadn’t had a serious relapse that prompted me to call the neurology office in between routine visits in 50 months. Minor bumps, sure, but nothing big.
FIFTY MONTHS!! How cool is that?

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Damn, My Long Relapse-Free Streak Has Ended

Friday, February 26, 2016

Respiratory Dysfunction in Advanced Multiple Sclerosis

What respiratory problems are common in advanced MS?
A common symptom of MS is muscle weakness which may affect the muscles that control breathing. Muscle weakness can make breathing difficult and shallow breathing may contribute to pneumonia. Muscle weakness can also affect swallowing which may lead to aspiration pneumonia. It’s important to remember that patients with MS may have difficulty fighting infection caused by bacteria or viruses.

What are early signs of respiratory muscle weakness?
Symptoms may be subtle such as shortness of breath or a gradual increase in coughing when the person with advanced MS eats or drinks fluids. Increased coughing or total obstruction of the airway may occur when eating solids. Medications that cause drowsiness may affect a person’s ability to control swallowing as well. Or symptoms might emerge when the muscles that control breathing are under increased pressure, such as when you may be standing in chest-high water.

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Living with Advanced MS: Respiratory Care

Thursday, February 18, 2016

Ocrevus Receives Breakthrough Therapy Designation

Genentech and Roche announced that the Food and Drug Administration has granted Breakthrough Therapy Designation for the investigational medicine ocrelizumab (Ocrevus™) for the treatment of people with PPMS. Breakthrough Therapy Designation is designed to expedite the development and review of medicines intended to treat serious or life-threatening disease and for which preliminary clinical evidence suggests that the drug may demonstrate substantial improvement over existing therapies. Remember that PPMS has no approved therapies.

Breakthrough Therapy Designation was granted to ocrelizumab based on positive results form a pivotal Phase III study (called ORATORIO) which showed treatment with ocrelizumab significantly reduced disability progression and other markers of disease activity compared with placebo in patients with PPMS. Top-line results were of ORATORIO were presented at the 31th ECTRIMS conference in October 2015.

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Being In MS Limbo

The road to diagnosis for MS can be long and winding for many patients. I’m happy for patients who receive their official diagnosis within just a few doctors’ visits. Not happy that they have MS, but happy that they can jump right in and get on with things; attacking the beast with medication, therapy, and determination.
For those of us who are not immediately diagnosed with MS, the feelings involved with the ‘not knowing for sure’ can be frustrating. Especially disturbing is when you suspect that your doctors do not believe you or your symptoms. The worst part may be when there is some clinical evidence that ‘something’ is not quite right, maybe there are lesions in the brain and obvious neurological symptoms, but your tests do not meet the standard diagnostic criteria for an official MS diagnosis.
That’s when the waiting game begins.
I was one of those patients who didn’t receive an immediate diagnosis. In fact, it took more than five years from what was my first obvious and debilitating attack (blinding optic neuritis) to the relapse that prompted additional testing that led to a diagnosis.

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What Is It Like to NOT be Diagnosed with MS?

Friday, February 12, 2016

Intimacy and Relationships

Intimacy isn’t something that is confined to physical affection or sexuality. Intimacy is about so much more! Intimacy is a process; ever changing and evolving. Four commonly accepted forms of intimacy include cognitive or intellectual intimacy, experiential intimacy, emotional intimacy, and sexual intimacy. 

Cognitive intimacy describes a form of activity where two or more people exchange thoughts, share ideas, or explore similarities or differences of opinion. Many of the discussions and story telling we do here at HealthCentral involve this very personal form of intellectual intimacy.

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What Does Intimacy Mean To You