List of Gastrointestinal manifestations in Polymyositis

Dysphagia is difficulty or discomfort in swallowing, as a symptom of disease. 

Odynophagia is pain on swallowing food and fluids that can be felt in the mouth, throat, or esophagus. 

Nasal regurgitation - during swallowing, the soft palate and the uvula move to close off the nasopharynx, preventing food from entering the nasal cavity. When this fails, it is called nasal regurgitation.

Reflux esophagitis is a condition where stomach contents come back up into the esophagus resulting in either symptoms or complications.

Abdominal bloating is a condition in which the belly (abdomen) feels full and tight. 

Constipation is a condition in which bowel movements occur less often than usual or consist of hard, dry stools that are painful or difficult to pass.

FROM MEDSCAPE

May is Myositis Awareness Month

Myositis is a disease with different forms that include dermatomyositis, polymyositis, juvenile myositis and inclusion-body myositis.  Myositis is one of the rarest of the autoimmune diseases diagnosed in just 1 in 100,000 people a year. It is hoped that raising the awareness of the condition will shorten the time that it takes to get a diagnosis.

Myositis describes a number of idiopathic myopathies that inflame the muscles that move the body. Diagnosis is often delayed because the symptoms are also common in many other muscle diseases. Myositis Awareness month is now in May each year to raise awareness of myositis, it's symptoms and treatments.

Inclusion Body Myositis–Functional Rating Scale (IBM - FRS)

1. Swallowing

– 4 Normal

– 3 Early eating problems—occasional choking

– 2 Dietary consistency changes

– 1 Frequent choking

– 0 Needs tube feeding

2. Handwriting (with dominant hand prior to IBM onset)

– 4 Normal

– 3 Slow or sloppy; all words are legible

– 2 Not all words are legible

– 1 Able to grip pen but unable to write

– 0 unable to grip pen

 

3. Cutting food and handling utensils

– 4 Normal

– 3 Somewhat slow and clumsy, but no help needed

– 2 Can cut most foods, although clumsy and slow; some help needed

– 1 Food must be cut by someone, but can still feed slowly

– 0 Needs to be fed

4. Fine motor tasks (opening doors, using keys, picking up small objects)

– 4 Independent

– 3 Slow or clumsy in completing task

– 2 Independent but requires modified techniques or

assistive devices

– 1 Frequently requires assistance from caregiver

– 0 Unable

 

5. Dressing

– 4 Normal

– 3 Independent but with increased effort or decreased efficiency

– 2 Independent but requires assistive devices or modified techniques (Velcro snaps, shirts without buttons, etc)

– 1 Requires assistance from caregiver for some clothing items

– 0 total dependence

6. Hygiene (bathing and toileting)

– 4 Normal

– 3 Independent but with increased effort or decreased activity

– 2 Independent but requires use of assistive devices (shower chair, raised toilet seat, etc)

– 1 Requires occasional assistance from caregiver

– 0 Completely dependent

 

7. Turning in bed and adjusting covers

– 4 Normal

– 3 Somewhat slow and clumsy but no help needed

– 2 Can turn alone or adjust sheets, but with great difficulty

– 1 Can initiate, but not turn or adjust sheets alone

– 0 Unable or requires total assistance

 

8. Sit to stand

– 4 Independent (without use of arms)

– 3 Performs with substitute motions (leaning forward, rocking) but without use of arms

– 2 Requires use of arms

– 1 requires assistance from a device or person

– 0 Unable to stand

9. Walking

– 4 Normal

– 3 Slow or mild unsteadiness

– 2 Intermittent use of an assistive device (ankle–foot orthosis, cane, walker)

– 1 Dependent on assistive device

– 0 Wheelchair dependent

 

10. Climbing stairs

– 4 Normal

– 3 Slow with hesitation or increased effort; uses hand rail intermittently

– 2 Dependent on hand rail

– 1 Dependent on hand rail and additional support (cane or person)

– 0 Cannot climb stairs


This 10 point functional rating scale was developed by modifying
the ALS functional rating scale.  The highest score possible is 40, and the higher the score the better the person is functioning. Find out more about this rating scale.


 

Association between Polymyositis and adult coeliac disease

Personally I have known I could not tolerate wheat for over 18 years and have been on a gluten free diet before being diagnosed with Polymyositis. I am now on a strict gluten free diet and still have both gastrointestinal and muscle symptoms, though these symptoms are much reduced.

The following is an excerpt from a published medical article about Polymyositis (PM). I think it is quite easy to understand. Osteomalacia is softening of the bones.

Gastrointestinal investigation of 14 adult patients with polymyositis disclosed coeliac disease in five. The inflammatory myopathy in our patients is not the same as the myopathy often seen in coeliac disease with osteomalacia. One patient has been free from both gastrointestinal and muscular symptoms for 5 years on a gluten-free diet alone. The findings strongly suggest an association between polymyositis and adult coeliac disease.

This article by K. G. Henriksson, Claes Hallert, Klas Norrby and Anders Walan was published in Acta Neurologica Scandinavica  Volume 65, Issue 4, pages 301–319, April 1982

Article first published online: 29 JAN 2009

What about you? Do you find a connection between your polymyostis and glutensensitivity like me? I would love to hear about it in the comments here.

Myositis Outcomes from NINDS

The DM Disease Activity Collaborative Study Group, and later the International Myositis Outcome Assessment Collaborative Study Group recommended development of outcome measures in all forms of IIM  - Idiopathic Inflammatory Myopathies -  in adults and children, and coordination and facilitation of clinical trials in adult and juvenile myositis. 

The main reason stopping this group from undertaking large multi-center trials in myositis is the lack of validated disease activity and damage indices. 
 For this reason, the first in a series of two workshops were held to address the following: 
1. Use of the core set of outcome measures recently identified to develop a myositis disease activity index, a preliminary definition of improvement, and damage index, and 
2. to develop consensus on issues related to the general conduct of clinical trials, extend of improvement and damage, development of inclusion and exclusion criteria and appropriate therapy, and recommendations in regard to the trial duration, dropout criteria, safety assessment, and post-trial evaluations. NINDS 2001

Since this was written things have progressed more on this soon. (Sorry, my research is slow)

What is myopathy?

The Muscular Dystrophy Foundation of Australia has some good fact sheets about myopathy including information about the three main types of inflammatory myopathy - Polymyositis (PM), Dermatomyositis (DM) and Inclusion Body Myositis (IBM). To find out What are Inflammatory Myopathies What causes Inflammatory Myopathies What are the forms of Inflammatory Myopathies Can Inflammatory Myopathies be cured How are PM, DM and IBM diagnosed What happens to someone with these diseases Treatment and more please click on one of the links below. Facts about Inflammatory Myopathies - Muscular... Facts about Inflammatory Myopathies pdf

Online current study into Myositis

If you have Dermatomyositis (DM) or Polymyositis (PM) and are in the USA, The Henne Group in San Francisco is doing an online study in May (dates to be determined) paying $100.
Contact Tom Mayer at (415) 348-2911 or email tmayer(at)thehennegroup.com

What is the prognosis for Polymyositis?

So I needed to get real and face what might be going to happen if the immunosuppressants do not work to stop the progression of the disease. Here is what I found:
The prognosis for polymyositis varies. Most people respond fairly well to therapy, but some have a more severe disease that does not respond adequately to therapies and are left with significant disability. In rare cases individuals with severe and progressive muscle weakness will develop respiratory failure or pneumonia. Difficulty swallowing may cause weight loss and malnutrition. National Institute of Neurological Disorders and Stroke

The progression of PM and DM varies considerably from person to person. Immunosuppressants can improve strength, although not all patients respond, and relapses may occur. PM and DM can lead to increasing weakness and disability, although the life span usually is not significantly affected. About half of the patients recover and can discontinue treatment within five years of the onset of their symptoms. About 20% still have active disease requiring ongoing treatment after five years, and about 30% have inactive disease but some remaining muscle weakness. Gale Encyclopedia of Medicine

Although polymyositis and dermatomyositis are regarded as treatable disorders, prognosis is not well known, as in the literature long‐term outcome and prognostic factors vary widely.  U.S. National Library of Medicine

Classification of idiopathic inflammatory myopathies

 

1. Primary idiopathic polymyositis
2. Primary idiopathic dermatomyositis
3. Polymyositis or dermatomyositis with malignancy
4. Juvenile dermatomyositis (or polymyositis)
5. Polymyositis or dermatomyositis associated with other connective tissue diseases
6. Inclusion body myositis
7. Rare forms of idiopathic myositis:
   
   • Granulomatous myositis
   • Eosinophilic myositis
   • Focal myositis
   • Orbital myositis.

RESOURCES: BMJ

Polymyositis is what?

Just so we are clear - I have a Neuromuscular Disorder. It is an Acquired Inflammatory Myopathy, as is Dermatomyositis (DM) and Inclusion Body Myositis (IBM). It is called Polymyositis. These diseases are also called idiopathic inflammatory myopathies and are grouped together due to muscle inflammation. Polymyositis,  Dermatomyositis and Inclusion Body Myositis result in muscle degeneration and muscle weakness and are therefore also called muscle disorders.

In polymyositis the inflammatory cells of the immune system directly attack muscle fiber s.

RESOURCES: Institute for Neurological Discoveries: Neuromuscular and Movement Disorders Division: KU Medical Center: University of Kansas.

You may also be intereted in:

• Occurrence of polymyositis
• Why Myositis is hard to diagnose

Ocular myositis

Lately I have had a lot of pain in one eye and sensitivity to light. This has led me to discover Ocular Myositis which describes a rare inflammatory disorder of eye muscles. I thought I would include it here due to it containing the word 'Myositis' even though it is not associated with other forms of Myositis.

The main symptoms of Ocular Myositis are severe orbital pain and diplopia (double vision) caused by eye movement.  It can affect 1 or more of the eye muscles.  In most people there may be orbital discomfort but no additional signs of the condition.

All symptoms of ocular myositis include severe pain in the eye, difficulty moving the eye, a swollen eyelid and sensitivity to light and diplopia.

Ocular myositis may occur with other conditions such as sinusitis, cellulitis,  lymphomas and immune disorders, including "sarcoidosis, systemic lupus erythematosus, Crohn′s disease, giant cell arteriitis, and linear scleroderma." (Lacey et al 1999; Harris 2006).

September 21 is no longer Myositis Awareness Day

Myositis Awareness Day was originally in September but this has now changed and Myositis Awareness MONTH is now in May. The aim of Myositis Awareness Day is to educate the public and healthcare community about myositis.
Myositis, which includes dermatomyositis, polymyositis and inclusion body myositis, is one of the rarest autoimmune conditions, and affects 75,000 adults and children in the United States alone.  I personally don't really know if this is rare or not! I have searched around the net though and not found much mention of  Myositis Awareness Day. (Maybe that is because it is rare??)

Here are the links for what I found that is happening for Myositis week in:

USA National Myositis Awareness Day

Australia

Do you have any other links to add?