Inclusion Body Myositis


Inclusion body myositis is a very rare disease, estimated to affect between 5 and 10 people in 1 million. Because of this, very little is known about the cause and there are no treatments that have been demonstrated to work. Fortunately, there is research being conducted under the sponsorship of two organizations: The Myositis Association, and the Muscular Dystrophy Association. IBM typically affects men more often than women and usually is diagnosed in the prime of life (58 to 60 years old), although most people who have been diagnosed will state that they had noticed symptoms for many years before. It is a very slow-moving illness, however it continues to progress throughout a person’s life. In my case, I noticed symptoms when I was 45, was diagnosed at age 55, and by age 65 had lost my ability to walk or stand.

  70 Responses to “Inclusion Body Myositis”

  1. To: lifedisabled
    I am here to applaud you+your efforts to”take life’s lemons+make lemonade”. Especially the solution oriented posts on your blog! My interest in this arose from a family member with a Myositis diagnosis
    I became paralyzed on my right side after surgery for a tumor at C-1 (neurofibromatosis) in1991, which left me learning to walk again,as well as mastering becoming a lefty! Our bodies and our spirits have an amazing capacity to compensate. I too, had my car adapted with a left-foot accellerator pedal and a steering knob. I became a confident driver again!. I went to work full-time in retail sales,and was good at it I did go on disability in 2000.. Only recently (2+1/2yrs ago) I had a run of very serious falls,which have left me unable to walk unassisted,bathe w/o assistance,bendover w/o falling over,or drive ,along with a long list of household daily living challenges. I really miss working in my garden+flowerbeds,as I was working on becoming a MasterGardener. My husband is in the process of making adaptations for accessability,now that I have a very nice motorized our 200 yr-old farmhouse!
    As I stumbled upon your blog,your testimony has inspired+ challenged me to get back to life again with whatever it takes, As well as become visable to my sister-in-law in my chair, because it is very likely that she will need one in the future,and right now she won’t even apply for a Disabled Access parking tag. I do think her stubborness will be to her advantage eventually. My disease also has no cure and deteriation is inevitable,but I do want to be remembered for what I could do and not what I couldn’t.
    Thankyou for the kick in the pants….sincerely,

    • Thank you for your obviously heartfelt comment. Please check back as I plan to post an idea for gardening from a wheelchair.


    • Found some information from University of California @ Irvine. Dr. Frank LaFerla tests that Lithium Chloride slows the onset of the skeletal muscle disorder. The clinical studies should be tested on patients with IBM (Inclusive Body Myostitis) as soon as possible. This information dated March 18, 2008. Clumps of dead or diseased “muscle tissue”. Amy-Loid Beta, antibodies bind to this Amy-loid Beta, the Amy-loid Beta has been cleared by the Auto-Immune system or what is left of this. I see my specialist today July 29, 2013, will present this to him and follow up with hopefully positive results.

  2. This was a very informative blog to read. I was diagnosed with IBM just a few months ago. I am only 52 years old. This disease scares me when I see the progression that many have had to endure. I have had the muscle biopsy, CPK levels increases and EMG tests all confirming IBM. I am supposed to start a Follastin gene therapy in Columbus, Ohio through Children’s Hospital by a Dr. Mendell who, along with his research professors, discovered gene therapy for quadricep weakness. They have done the testing on primates and mice and are currently doing the toxology testing. They are hoping to start the trial in April. These are injections directly in to the quadricep muscles. Have you heard of this?

    • Dear Teri,

      My husband has IBM as well, and we are looking at the trials inOhio. Have you heard anything more about them? My husband has had all of the tests required and fits the protocol. Even has a few letters recommending him. Just wondered if you could tell us the status of the trials… Thanks.

      • Please respond to me at the e-mail above.
        I am still waiting on the trials to begin and it’s July 2011. I was finally contacted last week and they are sending me a form in the mail to answer some questions. Did you get that?

      • I have Inclusion Body Myocitis, and I think I have developed a treatment for it. It has taken me years of reading, research, and trial and error testing on myself. Here it is:

        Daily Use the Following:

        1) 1250 mg of L-Arginine
        2) 750 mg of Ornithine
        3) 1 Ultra Mega Vitamin from GNC
        4) 1 hour of light exercise, must involve hands and legs
        5) 100 mg of COQ-10
        6) 2 tablets of Alieve
        7) 30 minutes of massage

        This has reduced the inflammation, has eliminated most of the muscle pain, has allowed me to have increased muscle and flexibility. It is not a cure, but I call it the FACKTOR TREATMENT. It works for me, please try it, and spread my free treatment to others with IBM. I welcome anyone in the medical research community who wants to test it. Please remember to call it the FACKTOR TREATMENT.


        Charles Facktor
        Waunakee Wisconsin

        • Charles, thank you for the information….
          I have had IBM for 7 years now, will be 65 in May
          I am taking some of what you have mentioend and
          am still struggling. I take Whey/Soy Protein, Creatine
          and CQ10 alomst daily…. my exercise had not been as
          daily as your mentioned regimen but I am certainly
          going to try to up the exercise….My left let is weaker
          and I get swelling on my ankle…have you had this happening ?/ and if so…is there something that can
          help the swelling to go down ??
          Thank you again for your information on IBM
          Ernie D Prosperi Mar 4, 2012

        • In October of 2011, Mr. Charles Facktor posted his protocol to stabilize IBM. I am wondering how he is doing — could he please respond?

          There are so few nutritional protocols for IBM–the one presented by the Myositis Association encourages an anti-inflammatory diet. Has anyone tried this and if so, what was the result?

          Thank you for any information related to diet and nutrition and this frustrating disease known as IBM. Gerry

        • My mother has IBM. Do you have further evidence that the Facktor treatment has been successful for you. I know that she would be extremely grateful for any help. Thank you for your blog comment It has given me hope that there may be something that could help her. Elizabeth Robb

    • Terri,

      I am very curious on how the Gene Therapy worked?

    • Can you give me any information about your treatment? Your blog is two years old and I am wondering how you are doing. My 88year old mother diagnosed with IBM (who was very active lady,dance, bowling,etc) is now using a walker to get around and a lift chair to stand up. She falls often. We are close to Columbus.
      Thank You

      • John, please check out the posts under Chronicles of disability as they cover a lot of the adaptations I have made for this illness. I was diagnosed in 1996 and have never had any form of medical treatment as I was assured by the neurologists at UCSD that there were no successful treatments available. Although my weakness has progressed, I believe I am in fairly good health due to not having subjected my body to some of the medications that others have used. On the other hand, I have noticed that some female patients tend to respond better to medical treatment then do males. With that in mind, you might ask your mother’s neurologist or rheumatologist whether they think a course of treatment might be advantageous. I notice you say you are close to Columbus, so I am sure you know that there is a medical trial going on there, but so far we have not heard anything about the results.


        • Hello Mike,

          I purchased your book for my Kindle and am re-reading now, looking for the link to the plastic glasses you recommended. I purchesed one from Amazon for my husband to use. He has Parkinson’s (doctors not sure now, after 14 years with it) and my 54 yr old daughter has Dermatomyositis. Your book was so moving and inspiring….also very helpful. Your courage is beyond belief. Thank you for providing a pretty thorough guide to living with and accommodating a chronic, very serious autoimmune disorder. I hyave not seen you on this blog for awhile so I hope you are ok. Best wishes, Brenda Karnes

    • i am interested to hear that you are going for an injection. i have been diagnosed 1 year ago with hibm i am 56 years and have symptoms for 14 years , can you keep in touch how your getting on. i live in ireland.

    • Terri:

      What results have you found after the Follistatin?


  3. Yes I know about those trials. Unfortunately I am unable to participate for a couple of reasons–I cannot travel and I cannot walk, so I meet none of the criteria to be included. However I will be watching the progress with considerable interest. While I can no longer walk I still have muscles that allow me to get through the day, although those muscles are constantly deteriorating. I’m hopeful that whatever therapy eventually results could then be applied to those muscles that still have some function remaining.

    Because this illness is rare, it is difficult to find any accurate projections as to what the future will hold for an individual who was diagnosed with IBM. My case appears to be one of the more severe, although I certainly had quite a few good years after I was diagnosed at age 55.

    One thing I would suggest to anyone who is newly diagnosed is that they enjoy the abilities they currently have as much as possible. For example, we did some traveling after I was diagnosed – more than we would’ve done otherwise – but even so I wish we had done more because now I am “stuck” in San Diego County. (I know, most people would consider that to be not such a terrible fate.)

    Good luck with the trial and thank you very much for commenting on my blog.

    • I am wondering if you could give me more information about the follistatin clinical trial. My husband has had all of the tests, biopsies, etc at Johns Hopkins, and even several letters of recommendation to Dr. Mendell to include him in the trial. We have not heard anything in awhile and my husband feels very discouraged. Do you have any other suggestions for us as far as who to contact? Do you have any other information about the trial that would be helpful to us? Thank you in advance… Heidi Bradbury

  4. My best advice is to check out the two forums listed under “Please Visit” on this site: Myositis Support Group and The Myositis Association (click “Community” on their site to find the forum – you need to be a member to enter their forum). I have heard the trials were to have started by now but have been delayed.

    • Hi Brad,
      I also live in Australia and have just been diagnosed. I am 45. have you continued with the hormone treatment. .. has it worked? I found a hospital in china that does stem cellbtherapy… whats your view on this? Sorry… I have so many questions! I have a friend with MS who has received funding for physio, chinese medicine etc to keep her in the workforce as long as possible. .. as yet I cant find any sort of financial assistance for IMB… do you know of any?
      Cheers Gaylene

  5. Hi everyone,

    I am in Australia and have had IBM for 0ver 15 years ( I’m 53 ). I have tried pretty much everything to slow its progression, and I think I have managed to achieve that. I have over the years had high dose steriods, methatrexate, rutuximab and just about everything else that various people had reported may have helped.

    I started HGH ( Human Growth Hormone ) about 8 months ago, .4mg daily and I really beleive it has helped. I am still very weak and cannot get up stairs or out of low chairs but I can walk 8 miles a day and my falls have drastically reduced. I also feel both mentally and physically better. I also have been having IVG every 2 weeks for the same period of time, so I have no idea if its both working together or one or the other.

    It has also enabled me to go to the gym 4 days a week, only light excersizes but it all seems to have helped.

    I have also been following very closely the Follistatin story. You can purcahse Follistatin through the body building network, but it seems bodybuilders have been having severe problems with tendons after they have used it. There also seems to be a lot of medics that beleive it may only be beneficial when used with healthy muscles.

    I am also trying to get on the trial in Ohio as it seems the only real positive solution that may be currently available. I can only pray that it works.

    Good luck everyone.


    • Hi Brad
      My husband has been diagnosed with IBM so we are trying to do as much research as we can. I read your entry and wonder if you could please tell me what IVG is. We are also in Australia and find that there seems to be very little information relating to this disease in Australia.

      Hope to hear from you.


      • I am Richard Hinder, 74, from Canberra, Australia.
        I was diagnosed with IBM in 1992.
        Since then I have contacted many organisations and people regarding IBM. The results have been consistently the same i.e. Inclusion Body Myositis is an idiopathic, degenerative myopathy with no known treatment or cure. I am able to use elbow crutches in the house and a manual wheelchair elsewhere – with masses of support from my good wife.
        Contact me if you wish.

  6. It seems like the problem with Follistatin from health food store is delevering the dosage to specific locations of the body that need it. I think all of us hope the Ohio trials work. At least their approach is in a new research direction.

    Regards, John

  7. Brad and Jenny I also live in Australia. I am in the proces of being diagnosed with IBM, a very long and painful process. Are you aware of any support groups for IBM in Australia, or any particular doctor I should be seeing to continue my care?

    • Ron
      I am In Australia also and have just been diagnosed with Ibm and are also looking for any support groups to gather as much information as possible
      I am 59 and have noticed changes for about 10 years mild at first but only in hind sight do I now realise what was happening, at least I know i didn’t cause it., like the rest we drew the short straw. Trying to remain positive and are thankful that I have the time to put some things into place before the worst comes I was given respose of (no cure no treatment ) apart from light physio and exercise and from my point enjoy it while i can

      • I am in Australia too, have had IBM diagnosed recently. Previously I had been told for years by experts that I had Dupuytren’s Contracture in the hands. Unfortunately started to notice weakness in left hand and arm wastage in 2006 which has become progressively worse. I’m 83 now and notice condition worsening. Have just started a falls class physio programme. We sure did get the short straw. In the years following 2006 I used to wonder why my legs used to become so tired after being on them for a couple of hours, now I know!

        • What help is there in Australia ?? I too have IBM and it’s a “Pain”(everywhere !!) I live in Queensland and surely there is an anti inflammatory process that at least able to keep us in a “holding pattern” till a viable move forward is an option ? ( have you tried immunoglobulin therapy? and if so did it help at all?) I am 67 and am not keen to roll over and fall off the perch just yet.
          What of the Follistatin gene transfer tests in ohio in 2013 and their early promising results ? See Below :-

          Article Highlights:
          A trial to test the effects of injecting follistatin genes encased in AAV1 viral delivery vehicles into the thigh muscles of men with Becker muscular dystrophy (BMD) or sporadic (nongenetic) inclusion-body myositis (sIBM) is being conducted at Nationwide Children’s Hospital in Columbus, Ohio.
          No adverse events in the men with BMD have been seen.
          Preliminary results show four BMD-affected trial participants have increased their walking distance at various time points after receiving the gene injections.
          No adverse events occurred in three adults with sIBM who received low-dose follistatin gene injections into thigh muscles; efficacy was not expected at this stage.
          Testing of follistatin gene transfer in ambulatory adults with sporadic IBM is underway.

          Look forward to hearing from someone out there,

  8. Hi Brad, my husband has been dianosed IBM since year 2000 and unfortunatelly neurologists at the Prince Alfred Hospital did not recommend any therapy in that time. It was until 2010 that my husband had two sessions of IVIg, but it seemed for him that in every session he deteriorated instead of experiencing an improvement. I am his wife and carer and I am doing all treatments at home. Hospitals and Gyms are quite scary for my husband, he suffers panic attacks and does not adjust to do exercise in crowded environments and noisy environments. So everything has to be done at home in quite places with a lot of patience. Residential Respite did not help him, even though it is needed for my own health as a carer. So there is no respite for me as a carer, and my husband is having all suplements you can imagine to help him to function. Lots of water I believe is a key factor to have your body working and gentle exercises in upper and lower limbs and back. I am happy you are still doing well after so many years diagnosed.

  9. I am a 50-year-old draftsman in Texas who has been blessed with good health, and I found your site while researching ADA showers. It is moving and humbling. I am also a Latin and Swing dancer, and I enjoyed the link to wheelchair dancing. Your paintings are beautiful, too.

    Thank you for sharing your story, and may God bless you here and in the hereafter.

    Charles, thank you for the information….
    I have had IBM for 7 years now, will be 65 in May
    I am taking some of what you have mentioend and
    am still struggling. I take Whey/Soy Protein, Creatine
    and CQ10 alomst daily…. my exercise had not been as
    daily as your mentioned regimen but I am certainly
    going to try to up the exercise….My left let is weaker
    and I get swelling on my ankle…have you had this happening ?/ and if so…is there something that can
    help the swelling to go down ??
    Thank you again for your information on IBM
    Ernie D Prosperi Mar 4, 2012

  11. I have had IBM for fours plus yrs and have really noticed more changes of weakend muscles. Columbus has called me back to measure my muscle mass to see how the disease as progressed and I’m hoping they will have another round of clinical research after this one is done, cause I can tell I’m getting weaker. But has anybody looked into other treatments like stem cell?

  12. Thank you so much for this blog.
    I was diagnosed with IBM in 2006.
    when doctors took 2inches of muscle from my left bicsep. They thought I had ALS.
    When the results got back they said that they had good news and bad news good news not ALS bad news IBM….?
    I didn’t know anything about this rare disorder.
    I am a musician, singer, actor and a performer.I live in Toronto On. Canada.
    I’m still singing and playing my saxophone and performing and writing songs, but I do move a lot slower now and starting last spring I’ve had to use a Cain for added balance
    I’m finding that my main task is to slow down the deterioration.
    I’ve been going to a nutritionist that has a machine.
    It’s called a quantum biofeedback machine. The creator of this machine is named Bill Nelson,please look it up.
    This machine has been a tremendous help to me. It actually diagnoses and treats.
    This along with proper diet and light exercise and massage theropy has kept me going so far.I also have a T-zone vibration machine which gives my body a complete light work out for 10 mins please look into that as well
    I truly appreciate this blog , before I kind of felt alone dealing with this because there is no cure and so rare
    Please feel free to contact me
    I just turned 64 yrs this Nov
    I’m also very interested in the new trials going on please keep me informed.
    If you like smooth jazz please visit our music site
    I will be returning to this blog periodically
    Keep our heads up and endure!!!

    Demo Cates

  13. Just wondering if anyone of the above posters had IBM iduced by taking ststin medication ?? My Name is Brad Adelaide Australia and i along with many others suffer debilitating muscle weakness wasting and pain which has been induced by statin medications. Ploease feel free to message me at

    • In my case I have never taken a statin – my cholesterol has always been quite low. However I have read that statins can cause muscle wasting.

    • Hi, Brad,
      I was just wondering if you ever had a muscle biopsy to determine if you have IBM. I ask because when my husband took statins and the doctor wasn’t monitoring his blood properly, he became extremely weak and could barely move for months. We thought he had ALS. It turned out that once he was removed from the stains, he increasingly got better. No IBM or anything else!
      Unfortunately I’m the one who was diagnosed with it instead. I eat right, always exercised, but had Chronic Fatigue Syndrome and Epstein Barr Virus for 28 years. I think this disease stemmed from that! After switching to eating VERY clean, I got rid of those two viruses finally but am left with IBM!

  14. I am in new Zealand, was diagnosed with IBM 2 yrs ago. It has been coming on for years. My legs are getting increasingly unstable, have to push myself up out of a chair and cannot climb stairs. I am also very giddy, has anyone else got this symptom? My drs just tell me no treatment is of any help. I do not know of any one else in NZ with this disease. My hands are becoming weaker which once runs me greatly. I am a positive person and try o look on the bright side of things. I would love to hear from anyone via the above email. I keep looking up! Regards Phyllis

    • Phyllis,

      With a population of more than 4 million of which 70% are of European origin, there should be at least 2 dozen people in New Zealand who have IBM. just a simple search for inclusion body myositis New Zealand brings up a number of organizations and studies that might give you a connection to finding help. Here is one of them: You might also contact the Department of Neurology at Auckland Hospital. I am afraid that your doctors are giving you the right information at this time about the lack of a suitable treatment, however there are several studies going on that might offer hope not too far down the line.

    • Hi Phyllis It was only yesterday that I was told that I have IBM it has been progressive over 4 years.The many times I have told doctors the problems I have and got sent to physio and said it was due to my age.I had to change doctors a lot till one actually noticed I had muscle wastage and lacked strength.
      To help my self I use a walker ,toilet frame and a commode chair in the bed room which has two uses firstly it helps me to get out of bed which is lower than I would like and I will be raising it so I will not have to push up to get out of bed.The other reason having it close to the bed it is like having your own ensuite .
      ..My girl friend gave me her mothers walker the one with the seat as she knew I took a bad fall on the foot path wrecked my glasses hurt my nose and had strangers pick me up and take me home I could not thank them enough.
      I am like you positive and if it takes all these things to make it easier then that’s it.
      I use the disability toilets and one day not being used to them I forgot to push the lock and just as I got my pants pulled up some one walked past and it flew open I was shocked and have never done that again.

    • Hi Phyllis

      My Father in Law has had IBM for many years. He is 81 now and has just entered Caughy Preston Home here in Auckland. I know he is in touch with other IBM Sufferrers in NZ and also a Society here in NZ. Would you like me to ask him for the details?

      Jo Fitzpatrick

    • You have my sympathy , i will tell of my own condition,but from what i gather no
      IBM condition s arent the same
      My weakness started 2001 mainly falling easily, dropping things, suffered heart failure previously and medication for this was the excuse for my ailments.
      Carried on falling and having to walk with a stick, eventually a biopsy was taken and IBM diagnosed
      I now need a stair lift, walk on level ground very slowly,can only sit on riser chair,toilet raised by 4 inches(100mm) need a wheelchair to go out, and feel uncomfortable in it. Do what you need to do now !!! dont wait. Please reply Chris.(ive tried to beat ibm but fear i cant, good job my wife is very caring,because although i look ok nobody else really understands)

    • Hello Phyllis
      I am from Auckland New Zealand.
      I had sIBM diagnosed about 5 years ago.
      I think some exercise that was recommended with a dyna band recently, has caused damage as I have been in acute pain for about 3 weeks.This followed a fall in May when I broke my wrist..
      I am under a doctor in Auckland Hospital who I see annually. He just does resistance tests,tells me how much worse I am, and that is it for another year!
      I am very frustrated and live in hope that the research that is being done will come up with something to give us hope.
      Kind regards Jan

  15. Good luck to all suffering this terrible disease

  16. Have IBM diagnosed via muscle biopsy. Am on Methatrexate, but don’t see that it is doing much or anything for me. Nice to hear from all you IBM people.

    • I cannot imagine why a doctor would prescribe methotrexate for confirmed IBM these days. Some doctors prescribe it as a trial when the diagnosis is not certain, since polymyositis does respond to immunosuppressants. It is especially important right now to avoid taking anything that could cause harm since there are some very promising new drugs in development that could be available within a few years.

  17. Are any of you excessively tired. I am tired most of the time and need to take naps often.

  18. Diagnosed apx 3 years ago but felt progression 2 years prior immediately after knee replacement/surgery. 5 months after surgery developed dropped foot and overall weakness. Thought there may have been a connection to statins as mentioned above or even Blood transfusion during surgery. Muscle bx confirmed IBM and on IVIG for 1 year which seemed to help a bit…just had a minor stroke which I understand could be attributed to the IVIG so had to stop treatment. Very overwhelmed but determined to see if there are other options, alternative meds, holistic, etc. Thanks for some other options in the blog.

  19. Hi,from Calgary Alberta, Canada. Diagnosed IBM at 58,now 77.I call it the disease that never sleeps. Now at the stage of total inactivity to make things easer for myself and care giver my wife shopped & shopped for access clothing and found none that she was satisfied with for me. She then began cutting up my clothes and doing her own sewing. The results are great, such that care givers, OTC’s ,visiting nurses,legions of friends have
    Persuaded her to manufacture same. Would you grant us permission to include your beautiful web photo on our web site now being designed ?

    Regards, Dr. Jack & Jackie Cameron, Calgary, Alberta, Canada.

    • Came across this blog during initial research … My biopsy results came in yesterday at which time I was diagnosed with IBM … so am in process of going off the steroids prescribed for polymyositis. It was quite a blow to learn that what was to be a recoverable condition is not.

      Dr. Jack, I would like to see your website, please send the link to me at

    • Hi Jack & Jackie,
      my husband & I live on a farm in South Africa.
      My husband was diagnosed with IBM 2013.
      I would really appreciate information about the clothing your wife is producing

  20. Hi,
    I am also from Calgary and also likely had Statin’s as a trigger 10 years ago, (elevated Ck levels) with formal IBM diagnosis 5 years ago. I am now 58.

    It was suggested to me by my Orthotist to try Creatine, and my ? today is whether to continue it. After an hour of web research, reputable agencies do seem supportive, if taken properly. Have others had +ve experiences w it, and if so, how long are you taking it for? I continue to walk on the treadmill 5 days/week (as I have for 25 years), and hope to sustain the healthy muscle as long as possible. Good luck everyone!

    • Hi Herb,

      I was just diagnosed in Sept of 2013. I’m 54 years old and live North of Boston. I probably had it as much as 3 -4 years ago. I started noticing it playing Hockey ( yes I’m a Bruins fan). I was losing the grip on my stick.

      At this point I have given up hockey, and have begun a light exercise regimen which includes light or no weight. I work my legs and Arms concentrating on the adjacent muscles.

      At this point I would just like to be able to maintain my ability to golf for as long as possible. I’m not sure what the future holds but I am hopeful. It is hard to find people in their 50s who have the disease. The affect on people in their 50s is very different from someone who is retired or in their 70s.

      I have been reaching out for practical direction and I just picked up Creatine today. I am investigating the supplement as I write this blog. One of the IBM patients I contacted in NY suggested that she takes 750 Mg 2 X a day. the bottle I picked up suggested 2100MG 2 X /day. The recommendation I received from Johns Hopkins Myositis Ctr in Baltimore was 3000 MGs/Day so 1500 2X per day.

      I’m not sure if this is specific to my Body at 6’0″ 210lbs. the recommendation of supplements is detailed below.

      We routinely recommend creatine monohydrate at a dose of 3 grams per day to help maintain muscle bulk. This can be obtained over-the-counter at most vitamin or nutrition centers. This natural supplement is very safe, without known side effects, and has been shown to improve muscle strength in patients with different muscle diseases.

      Other supplements are less well studied, but some have at least a theoretical benefit in patients with IBM. The so-called “mitochondrial cocktail” has been recommended by some physicians given that abnormal mitochondria are a common feature of IBM muscle pathology. This cocktail includes Coenzyme Q10 (CoQ10 at a dose of 50-600 mg/day), L-Carnitine, alpha-lipoic acid, B complex vitamin (avoid excessive doses as can cause neuropathy), and other antioxidants such as Vitamin E. While these supplements are generally safe and well tolerated, there is little or no evidence that they are beneficial in IBM, and some of these, such as CoQ10, are very expensive and can interact with other medications.

      I hope you are well and maintaining as much strength as possible.

      Best of luck.

      • Hi Ed,

        I do also live in central MA. I was diagnosed with IBM in 2011 at age 52 after a muscle biopsy. It started in 2005 with unexpected loss of my left leg, falls and weakness. Then I had the same thing happening to my right leg. I had lots of tests done in the 6 years prior to my diagnosis and they also found that I had a spine stenosis in my neck that caused numbness to my arms. Then I had a surgery in 2012 to correct it but now I feel that something was shifted (not 100% recovered).

        I was involved in physical activities and I know how you feel. Now my physical activities are limited. It’s like I have a rechargeable battery and when my energy is depleted, I get really tired and I have pain in my legs.

        I also try a mixture of vitamins (CoQ10, Niacin, B-complex, D, and Omega 3) but did not feel any change. Now I take 50,000 units of D vitamin three times a week (because I have a low D count) and a multi-vitamin and B-complex every day. One thing that really bothers me is that prior to my IBM symptoms, I was on three different medication for high cholesterol for over 15 years (LIPITOR-80mg, ZETIA-10mg and TRICOR-57mg) and I am wondering if the statins and the mixture had something to do with my IBM.

        I hope you are well and thanks for the info!

        Best regards.

  21. I am a 66 year old woman who was diagnosed in February 2014 via muscle biopsy, but have had this disease since before 1998. What complicated my case was neuropathy from a back injury I sustained in 1987–the injury required surgery at the L5-S1 area of the spine.

    My question for this blog is this: do any of you have numbness in your IBM muscles? Is numbness a common symptom of IBM?

    My IBM is mostly on my left arm and leg and my left leg–my right arm continues to be fairly functional. The numbness I experience is in my legs, not in my arms. It is not painful, but it is very annoying and irritating, especially at night.

    Thanks for any help or information and thank you for this informative and caring blog.

    • Gerry, if you haven’t already, you should definitely join The Myositis Association. Their webpage has a message board that contains a huge amount of information provided by others dealing with the disease. I did a quick search of the IBM section and found one person who brought up numbness. Not sure how severe your numbness is, but peripheral neuropathy is a common condition for those of us with IBM and that might be what you are noticing.

  22. Good afternoon I my self have ibm I am only 53 years old I live in the UK and I see most people on this board live all over the world after biopsy 18month ago I was told I have ibm I would like to tell people about a new trial for treatment for ibm it is called bym338 if you put that into Google and have a look online and I hope this will be some help to you

  23. Also I forgot to say in my last post the new treatment for ibm bym338 is made by Novartis I hope this will be of some help to everyone

    • Hi David.thanks for the info on Novartis . Are you participating in the clinical trials? I live in Canada have IBM and there aren’t any trials here at present.

      • Hi Angela. I also live in Canada and cannot get much info.I would like to get in touch with or hear back from more Canadians, particularly in BC. I live in Richmond, near Vancouver. I am starting to find driving more difficult because my right leg extensor is not responding well to shifting from gas to brake pedals.I am trying to find some adaptative orthesis. Has anybody with IBM found how to adapt to driving with the leg muscle weakness other than adapting the car?

      • The bym338 trial is well underway in the uk and 14 sites around the world 240 people are takeing part we will no a lot more about it by the end of this year I hope to have bym338 treatment in 18 months from now but please google bym338 I think when you look at the Novartis website for a update bym338 is to be used for two things Copd and ibm good luck to everyone

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  30. I was diagnosed with IBM in May 2014. am 59 year old male. Don’t know what is going to happen to me. have weakness of the legs, and somewhat in the arms. My doctor is treating me with Betamethasone 4 mg at my own request, I get an injection every two weeks and it improves my leg strength some, but am terrible worried about what will happen in the future or weather I will end up in a wheel chair I walk the threat mill for one hour every two days and it helps a little but it don’t cure at 2.4 miles per hour when I was normal I used to run at 4.0 miles per hour. then 3.0 m/h and now 2.4 m/h I can still go to the second floor of my house slowly one stair at a time

  31. Good morning everyone like everyone on this board I have ibm where I live in the uk the ucl in London are doing the trial for bym338 looking at a lot of posts on this board are very good a lot of you have tried a lot of new drugs why I beleve in the Novartis drug is two things one the company is world wide with reserch and two they are cash rich and also bym338 is now going into stage three of the trial which I only hope that everyone with ibm can get this drug Asap like everyone hear ibm has changed my life that’s why I am sure with this drug we can all try and get some life back it would also be good if a lot of you nice people can look into the reserch of the drug bym338 and post what you think of the drug I will look forward to hearing from you all good luck everyone

  32. Anyone with IBM have issues with low hemoglobin? What do you do for it?

    Taking medication that is somewhat working or slowing down the disease?

    Have any skin issues because of the disease?

    What do you do for posture and core?



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