Why you should get a bone density scan if you have SM

Photo shows Doctor explain bone mass density
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Anyone living with ISM should go immediately for a bone density scan to make sure they do not have the beginning stages of osteoporosis.
With any drug treatment, you must weigh the benefits against the risks.

I have lived with indolent systemic mastocytosis (SM) almost all my adult life. I was diagnosed in the year 2000 but went undiagnosed for many years before that.

In 2021, I discovered that at the age of 51 I have severe osteoporosis caused by indolent SM, or ISM. I started treatment immediately with denosumab injections every six months. My doctors warned me about the importance of dental hygiene before starting the treatment.

Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.

Recently, I had a tooth that got bad, and the first dentist I consulted with said the tooth needed to be pulled. I had taken the injection three months prior to finding out about my tooth. I had to call and talk to the doctor who gives me the injections to figure out the best course of treatment.

Read more about SM signs and symptoms

Pulling a tooth while on denosumab can increase the risk of developing osteonecrosis of the jaw. This is a serious condition in which the jaw does not heal well. I was told that I would need to wait until the end of the six months and then not take my next shot until after the tooth was pulled. I would then need to wait another three months before I could start treatment again. 

Another problem because of all this is something called rebound effect. A sudden discontinuance of the drug can lead to serious side effects. These include vertebral fractures and bone loss. I was in a precarious situation and did not know what to do about it. I decided to go and get a second opinion about the tooth that was bothering me, and the second dentist decided that he could save the tooth by performing a root canal.

Weigh the benefits vs. the risks

Because of this decision, I was able to get the tooth fixed, and I did not have to stop the injections. 

With any drug treatment, you must weigh the benefits against the risks. It was a scary decision even to start the injections for the first time. I discussed it with my family doctor and the doctor who treats me for ISM. There are so many risks. But at 51, living with severe osteoporosis, I had to make the decision to start the treatment. 

Anyone living with ISM should go immediately for a bone density scan to make sure they do not have the beginning stages of osteoporosis. If doctors catch it early, there may be safer options that can help you instead of finding out it’s severe. 

My injections are working, thankfully. I just do not want anyone else to have to go through all of this if it can be helped. Until I found a doctor who specialized in ISM, I was never told I needed a bone density scan. This is another reason it is important to find a doctor who is knowledgeable about this disease. 

Do your research, and take care of yourself to the best of your ability. Talk to your doctor and ask questions. Stay strong, and never give up on yourself.