There is one important detail about living with indolent systemic mastocytosis (SM) that I learned the hard way and might never have been an issue if I had been treated properly once I was officially diagnosed: SM causes osteoporosis. Now it is my mission to spread this information.
The long road to the right treatment
It took over 10 years for me to find a diagnosis. Then another 21 years of telling each doctor that treated me I had SM. As my symptoms worsened over the years I eventually had to research and find a specialist myself — and then demand my doctor send a referral out of state to get me seen. I needed actual help from a doctor that was familiar with this disease.
I was only worried about the symptoms I had getting worse. My skin was terrible. My bone pain and gastrointestinal problems were severe. Brain fog was creeping in more all the time. These are just a few of the symptoms that never went away. I was miserable, and no one seemed to take the time to research any way to help me.
I had no idea that SM could cause osteoporosis until I made it to that appointment in Texas. That was the first test they ran on me. A bone density scan. Imagine my horror finding out at 51 years old I had severe osteoporosis. After all I had been through with this rare disease, now I had a new diagnosis that stopped my life in its tracks —- and as I would soon learn, had way more to it.
Osteoporosis and oral health
I was sent to another doctor to discuss different medications and treatments to build my bones back up. I learned that they were going to start me on denosumab injections every six months. Not so bad. I could manage that. But then they sat me down and explained the side effects of this drug.
The worst ones were osteonecrosis of the jaw and unusual thigh fractures. Also, there is an increased risk of spinal fractures if the treatment is stopped or delayed.
Osteonecrosis of the jaw is a rare, serious condition where jawbone cells die and bone becomes exposed. It often follows dental procedures like tooth extractions. Problems with teeth run in my family in the women after childbirth, even with proper care — and of course not knowing about having severe osteoporosis had not helped my teeth either.
Before I could begin the treatment, I had to go to my dentist for an exam and get any needed work done prior to that first injection. I had several extractions and two root canals.
What patients with SM need to know
I am passionate about spreading awareness about the risk of osteoporosis in SM patients because of what you must deal with if you are ever put on these types of drugs.
For the last five years, each time that I have gotten the injection I’ve first visited my dentist to get my teeth cleaned and make sure there are no problems.
If there are problems and you need dental surgery, it should be done four months after the last injection. Also, if you need extractions you will not be a candidate for dental implants. Keep that in mind.
To reduce the risk of osteonecrosis of the jaw you must keep good oral hygiene. Brush twice a day and use antiseptic mouthwash.
It is especially important to make sure the doctor who is treating your SM knows that you are at an elevated risk of osteoporosis and bone density scans are necessary. Talk to your doctor now about preventative measures such as vitamin D3 and calcium supplements.
Rare diseases wreak havoc on our bodies in many ways. It is so common to have more than one diagnosis. With proper care, some can be prevented. But you must do your research. You must advocate for yourself. If you do not feel like you are getting the proper treatment, find another doctor. Preferably a specialist. In my case I must go out of state for proper treatment.
Find a doctor that knows about SM. Take the supplements. Have bone density scans. And take great care of your teeth! I waited too long to make my demands and it was too late for me. So now my concern is for you. Do not let this happen to you! Be proactive and take care of yourself!
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