FAQ - Myositis, Inclusion Body
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What is dermatomyositis, polymyositis and inclusion body myositis?

Are there any cures for it?

Here is a website to give you more information:

http://www.clevelandclinic.org/health/health-info/docs/3600/3666.asp?index=12053&src=newsp  (+ info)

Does anyone know about Inclusion Body Myositis (IBM)?

Is there anybody out there who has, or knows someone who has, Inclusion body myositis? It is a muscle-wasting disease.

I have looked it up on the internet and the prognosis isn't good.
My sister's partner has recently been diagnosed with this in his legs and, already, has to be in a wheelchair when going to the shops.

Sorry if you have read this already.
It is an underdiagnosed condition as it occurs mainly in the elderly with multiple comorbidities and is frequently misdiagnosed as polymyositis and wrongly treated with steroids. Treatment-resistant 'polymyositis' in the over 50s is often. Theories have proposed it as an autoimmune or viral-induced disorder.
There is no effective treatment for the disease but high quality RCTs (randomised clinical trials)are few. Many therapies have been tried, unsuccessfully.Consensus is that steroids and conventional immunosuppressive therapies are not beneficial clinically. High-dose prednisolone paradoxically worsens strength whilst decreasing inflammation, possibly due to increased amyloid accumulation. Intravenous immunoglobulin is very expensive and ineffective.9 More specific immunotherapies require exploring.
There tends to be very slow progression but those who develop symptoms at an older age tend to progress more rapidly. Progressive dysphagia is associated with a poorer prognosis and quality of life.w
Recent trials have studied intravenous infusions of human immunoglobulin (IVIG) in IBM. Results have been contradictory, but provide no firm evidence of enduring benefit. Further trials continue, but currently the costs and side-effects do not justify routine treatment of IBM patients with IVIG.

The best people to contact to see if there are any current trials and for information...
Institute of Neurology, UCL
National Hospital for Neurology & Neurosurgery
Queen Square
London WC1N 3BG
Telephone +44 (0) 020 7837 3611
Fax +44 (0) 020 7278 5069  (+ info)

how does 'inclusion body myositis' affect a persons lifestyle? Physically, socially and emotionally?

unfortunately it appears to be a progrssive and resistant disorder. This should have a progressive decline in ones physical life. Emotinal? yes depression is expected but firtunately treatable. Social life depends a lot on family support, without which social life can be fairly poor, good luck  (+ info)

has anyone beat inclusion body myositis?

During the course of the illness, the patient's mobility is progressively restricted as it becomes hard for him or her to bend down, reach for things, walk quickly and so on. Many patients say they have balance problems and fall easily, as the muscles cannot compensate for an off-balanced posture. Because sIBM makes the leg muscles weak and unstable, patients are very vulnerable to serious injury from tripping or falling down. Although pain is not part of the "textbook" description, many patients report severe muscle pain, especially in the thighs.

In up to 60 percent of cases, patients with sIBM develop weakness in the pharyngeal muscles, used in swallowing, causing choking (darlek, 2006).

Patients with sIBM usually eventually need to resort to a cane or a walker and in most cases, a wheelchair eventually becomes a necessity.

From a recent article: "The progressive course of s-IBM leads slowly to severe disability. Finger functions can become very impaired, such as for manipulating pens, keys, buttons, and zippers, pulling handles, and firmly grasping handshakes. Arising from a chair becomes difficult. Walking becomes more precarious. Sudden falls, sometimes resulting in major injury to the skull or other bones, can occur, even from walking on minimally-irregular ground or from other minor imbalances outside or in the home, due to weakness of quadriceps and gluteus muscles depriving the patient of automatic posture maintenance. A foot-drop can increase the likelihood of tripping. Dysphagia can occur, usually caused by upper esophageal constriction that often can be symptomatically improved, for several months to years, by bougie dilation per a GI or ENT physician. Respiratory muscle weakness can sometimes eventuate."

There have been several attempts to use different medications (immunotherapies) to treat sIBM but in clinical trials, although some have produced minor short term improvements, none has been shown to be effective in the long term. These include the common immunotherapeutic agents, such as corticosteroids, azathioprine, methotrexate, cyclosporine, cyclophosphamide and total lymphoid irradiation. Why this is so is a mystery because based on the theory presented here these drugs should have a better effect in helping IBM. The response of dysphagia to intravenous immunoglobulin can be significant (Dalakas, 2006). No medication has yet been developed specifically for sIBM.

New treatments called Biologic agents (Biologics) are being developed to treat immune disorders -- these are not drugs as we commonly understand them, made from chemicals, they are developed from proteins taken from the cell. One study by Dalakas is now under way is using an agent called Campath (alemtuzumab) to treat IBM  (+ info)

what treatments are there for inclusion body myostis?

either traditional or alternative treatments in the UK only. Subject lives in Manchester.

MYOSITIS can be cured by the use of the Homeopathic Remedy ARNICA MONTANA 30 taken thrice daily half hour before meals can be taken more frequently in severe conditions take it every half an hour till you start feeling relief after it the regular dosage will suffice i.e thrice daily. No side effects or complications just total 100% relief and cure !
Take Care and God Bless you !  (+ info)

My Dad has been diagnosed with IBM(Inclusion Body Myocitis), What is the best source for information on IBM?

It is a disease which slowly deteriorates the muscles in the human body. It is thought to be a type of Lou Gherigs Disease.

There are no known drugs that cure or suppress this diseas. Non tradional treatments might be the best source for a cure.

Here are some additional resources for information

My hunch is that the Water Cure could be beneficial.

The Water cure with unrefined sea salt is like a blood transfussion for a dehydrated body with poor mineraliztion.

Apple Cider Vinegar could help balance pH
http://curezone.com/blogs/f.asp?f=179&p=1  (+ info)

What is an inclusion protein (body)?

structures that devlope in a cell due to an infection  (+ info)


why arrr gurls so scared about having a perfect body like just be yourelf!

yes, I agree, we are not all supposed to be the same. The world is just too vain today.  (+ info)

Moms of twins - how long does it take to recover body shape after pregnancy?

Ok, this question is silly and shallow. I'm acknowledging that in advance. And, yes, I'm suitably embarrassed about asking about this topic.

I'm almost 12 weeks along and am expecting twins. Today, I took a look at an online photo gallery of pregnant bellies of women expecting twins or more - almost all the pictures are from twin pregnancies, with the occasional inclusion of an expectant mom of triplets. If you're curious - it's at http://pregnancy.about.com/cs/pregnancyphotos/l/bltwinbelliess.htm

So, I perused the belly pics and am astounded at just how large the bellies are. Yes, I knew that I could expect to grow larger than women pregnant with singletons, but I'm honestly intimidated and more than a bit freaked out. Some of those belly pics, particulary past 30 weeks, look painful.

How painful is it, really? Do the stretch marks hurt? For moms of twins or more - how long did it take you to regain your pre-pregnancy shape? Was it possible at all?

Congrats girl..twins are the greatest! Yes your belly will get HUGE..and its not necessarily your belly that hurts..more like your pelvis and hips and back. The stretch marks dont hurt a bit..I wasnt even upset when i got them..i figured that they were a mark of mommyhood and they still dont bother me! I went through a lot in my complicated pregnancy..I am just happy I came out of it with two beautiful baby boys! Well I had my boys 6 months ago and still have like 25 lbs to lose..(i know its sad huh) It has been really hard for me to lose the weight..i was depressed at first and I still am when i try to squeeze in my prepregnancy clothes. I am giving myself another year to lose it all. OH and your belly looks a hot mess after giving birth. I still hate looking at my stomach...loose skin and covered in stretchmarks..ewwww. OH well its all worth it!  (+ info)


ihave big breast thats whats atracts the boys but im a tad chunky but i have a perfect butt.what should i do

hun i am just like you are! everyone tells me how big my boobs are and how nice and perky my butt is! and i am chunky too but honestly if your satisfied wit ur body then u do what u have to do but if ur not then try and get exercise lose the chunkiness but honestly if u wanna do it for a guy i wouldnt id do it for myself if a guy doesnt like you for the way u look now then hes not worth it  (+ info)

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