As the rate of deterioration in muscle strength seen in IBM is slow, this means that helpful clinical trials for IBM need to recruit large numbers of patients with IBM, use sensitive measures for the condition, and last long enough to detect treatment benefit or lack of benefit.
A recent systematic review of all the clinical trials that have tested various potential treatments for IBM concluded that these trials were too small, too short and, most did not use sensitive enough measures for monitoring the condition. These trials therefore cannot tell us whether any of the treatments they tested do or do not work. This means that experts have no evidence upon which they can say any treatment works for IBM. Thus, decisions on treatment are left to the expert’s discretion and in fact many do not treat IBM with any drugs.
The presence of inflammatory cells in some biopsies led to suggestions that steroids and other drugs that suppress the immune system might be beneficial in this condition. However, given the lack of evidence, using these immunosuppressant treatments is controversial. Some doctors are of the opinion that these drugs can give short-term improvement and possibly long-term benefit in slowing the rate of progression, although all agree that these drugs will not prevent muscles from continuing to weaken in the long term. Other experts argue that any benefits are transient and are outweighed by long-term side-effects of the drugs.
Researchers have also studied intravenous infusions of human immunoglobulin (IVIG) in IBM. Again, the trials on its benefit are inconclusive and, given its costs and side-effects, it is not a routine treatment for IBM. An exception to this is that NHS England Commissioning policy and National Immunoglobulin Guidelines allow the use of IVIG specifically for severe swallowing problems seen in some cases of IBM.
In summary, there is currently no proven treatment for IBM. Further research into the cause of the condition will help the development of effective therapies. Clinical trials re-testing previously trialled or new treatment ideas may be ongoing, so it is worthwhile keeping in touch with Muscular Dystrophy UK, other support groups and your specialist to hear of any new developments.
What other support is available for people with IBM?
Physiotherapy: appropriate exercises can help maximise the efficiency of the relatively unaffected muscles. When walking is affected, physiotherapists can advise on walking aids (sticks, etc.). Physiotherapists can also teach people how to transfer between chairs, beds and wheelchairs if and when this becomes necessary.
Occupational therapy: occupational therapists (OTs) can provide advice and equipment to assist in tasks that may become increasingly difficult with weakened muscles. Typically, OTs will observe people in their own homes so they can advise on assistive strategies, aids and equipment. Hospital doctors and GPs can make referrals to OTs, or people can refer themselves, through Social Services.
Speech therapy: speech and language therapists (SALTs) also have expertise in supporting people with swallowing difficulties (dysphagia), which may affect some people with IBM. Dysphagia may cause fragments of food or drink to enter the windpipe, resulting in coughing after meals, or chest infections. Some people with IBM reduce their food intake, which results in significant weight loss. SALTs can advise on strategies to help swallowing, which may include other techniques, such as IVIG (see above) or permanent tube-feeding to ensure adequate nutrition.
What can I do to maintain health and wellbeing?
Even if you have IBM, it is generally beneficial to remain as physically active as possible. However, this needs to be undertaken safely as falls can cause injuries, which worsen disability. A physiotherapist familiar with muscle-wasting conditions is best-placed to advise on how best to optimise physical activity within sensible and safe limits.
The disability caused by weak muscles will be aggravated if one is overweight, so achieving and maintaining an ideal weight is helpful. As weight control can be more difficult when physical activity is limited, preventing weight gain in the first place is best.
Research into IBM is ongoing in the UK and internationally, and you may wish to get involved in the testing of new potential treatments and therapies in clinical trials. If you are interested, mention this to your physician. You can also find out more about ongoing research and clinical trials on the Muscular Dystrophy UK website at www.musculardystrophyuk.org/research or contact our research team at firstname.lastname@example.org