Approved Treatments for IBMPFD

While there are no "approved treatments" for the inclusion body myopathy or frontotemporal dementia (although some non-approved activities may help, see sections on nutrition and exercise), there are approved treatments for Paget's Disease of the bone.

Use the following link to read a news release on the latest approved prescription drug for Paget's Disease: Reclast.

The following link contains some more information about Reclast:

Additional information about the uses of Reclast can be found at:

Check with the prescribing doctor for the exact parameters, something like a dose is 5mg IV with calcium and vitamin D supplements for two weeks prior.

Treatments for Symptoms

While symptoms and rates of degeneration vary significantly between affected persons (even siblings with the identical mutation), some of the symptoms can be treated with nutrition, exercise, and equipment. See those sections for specifics about some items that have worked (or not worked) for one or more affected parties.

Cardio-Vascular Problems:

Within 10 years, I went from playing basketball (albeit poorly) to not even being able to shoot a basket or raise a basketball over my head. This coincided with having to go from walking fast to partial use of a manual wheelchair to full-time use of a powered wheelchair. During the same time frame, as my ability to properly exercise declined, numerous other problems surfaced, including high blood pressure, edema (swelling, primarily in the feet), poor circulation, a decrease in "good" cholesterol, and an increase in triglycerides. While changes in lifestyle (diet) may help counter the loss of good exercise, some prescribed medications have also helped.

As my blood pressure went from a nominal ~ 120/80 to ~ 170/100, I did not notice any effects, but my doctor stated I must do something. After a few weeks, just a prescribed diuretic and blood pressure medicine has returned my blood pressure more acceptable values, e.g., ~ 130/85. The swelling in my feet has been almost entirely eliminated and I have better circulation, i.e., my lower extremities do not get and stay COLD. Since the probability of a debilitating stroke or similar was much higher than the probability of a fatal heart attack, taking a medication is decreasing the probability that my caregiver will have to provide even more support (which could possibly have been avoided).

I am trying supplements (more flax seed oil, since I am allergic to seafood) to help with the lowered HDL (good cholesterol) and some additional diet changes to help with the triglycerides (lower carbohydrates, an ounce of alcohol every day or so, cranberry juice).