I look like I lost a fight with a pencil eraser

During the visit with Dr. Jeff when he offered to treat the rash on my face at no cost to me, he took the "before" pics.

I was more than happy to oblige for a couple of reasons. First- he was treating me free of charge. I think a few pictures are the least I could do. Secondly- dermatomyositis is a rare disease. Most doctors may never see one case their entire career. I think it's important for medical students to have exposure to as many rare diseases as possible to help them think outside the box when trying to formulate a diagnosis. It's not uncommon for DM to be misdiagnosed for a period of time resulting in permanent disability to the patient.

So Dr. Jeff got his pictures and scheduled an appointment for my first laser treatment. I was given a topical anesthetic gel to apply an hour in advance. He also instructed me to place plastic wrap over the gel to help my skin absorb the gel prior to treatment.

You can probably imagine the looks I got walking through the hospital with my red face covered by plastic wrap. I wasn't bothered by it at all. I was used to getting looks for the red face.

On my first visit, Dr. Jeff gave me protective goggles for my eyes, fired up the laser and we were off. Even with the gel, the laser was a little painful. It felt like needles poking me in the face. Maybe comparable to a tattoo, but I've never had one to know for sure.

He treated a large area of my face in a relatively short period of time then explained what I should expect to happen next. He told me my face would look bruised. Then the bruises would turn into scabs and flake away. If the treatment worked the way he hoped, the skin underneath should be completely free of any rash. "You should never be able to tell it was there."

Once the bruising started, they were perfectly round and about the size of a pencil eraser. The big joke at work was that I lost a fight with a pencil eraser.


Over about the next week or two, the bruises turned into scabs and flaked away just as Dr. Jeff said they would. Underneath? Brand new skin. No rash at all. I was ecstatic!

I went back to Dr. Jeff for a few more treatments and more pictures of the progress. Eventually, it was all gone.

The whole time I had the rash I really never thought that much about it. It didn't bother me to go out in public, or so I thought.

I never realized how much it really affected me  until it was gone.

Starting to see improvements- but wait, there's more...

Things seem to be looking up. My hair is growing back and my muscle pain is improving. It should be smooth sailing now!

Hold on... not so fast.

One thing that is not improving at all is the rash on my face. The rash over my joints seems to be improving but my face is not changing at all. I also have noticed something new. I have have very sore spots all over my abdomen, around the edge of my armpits, at the top of my breast and the back of each arm from the top to my elbow. These are not just sore spots but there are hard knots in every spot that is sore.

It started with just a few on my abdomen. When they became extremely sore, I saw a surgeon to have them removed and sent off to find out what they were. It turned out to be calcinosis with fat necrosis. Simply put, calcium deposits with dead fat tissue surrounding them.

I went back 4 times to have more removed from my abdomen. I'm still angry that the surgeon wouldn't remove more fat tissue while he was at it but what can you do? :)

The calcium on the backs of my arms became very large and painful and when I noticed a lump at the top of my breast and up near my armpit, I wanted to have them removed right away.

Since DM can be caused by an underlying cancer, there was always the concern that something we had been unable to detect initially may pop up. I wasn't taking any chances since my mom had breast cancer (she has been cancer free for over 20 years).

I have always had a high tolerance for pain medication and sedatives. In fact, I can recall numerous conversations I had in surgery with my surgeon and nurses when they told me 1) I should be asleep from all the drugs they gave me and 2) I will not remember anything that happened. Sedatives and pain meds don't scare me but general anesthesia terrifies me.

One of my biggest fears was realized when the surgeon said I would have to be put under to have the calcium deposits removed from my arms because they were large and he couldn't safely give me enough sedative for a surgery that would last this long.

Reluctantly, I agreed and we scheduled surgery.

The surgeon expected surgery to last about 45 minutes. He would remove the large calcium deposits in my arms and the calcium deposits by my armpits and breast. Surgery ended up being 2.5 hours.

Once the surgeon started he could see the calcium deposits were much larger than expected (approx 8" long and 1" in diameter). They were also attached to the muscle tissue so he could not remove them entirely without risking permanent damage to my already scarred muscle tissue. The rest of the calcium deposits were small and easily removed. Everything came back benign as expected.

Recovery was much more painful than I expected but it was worth it to have those huge deposits out.

Now it was time to head back to the dermatologist to see what, if anything, could be done about the red face that would not go away.

We Need to Change Things Up

After being treated with Prednisone and Plaquenil for about a year, the doctor was becoming concerned with the side effects of the Prednisone.

The weight gain, water retention, infections, increased risk of bone loss, sleep issues and the fact that I seemed to hit a wall where the medicine was just not improving my condition any more were enough for him to make a change.

When you are taking Prednisone you can not just stop. Prednisone is a corticosteroid. Corticosteroids are produced naturally by your body and when you are taking prednisone, you body will slow the production and even stop producing them all together. You have to slowly taper the prednisone so your body will adjust and pick up the production on it's own.

While tapering the prednisone, the doctor had me start a new med called Methotrexate. Methotrexate is an immunosuppressant drug and works to suppress the immune response your body is having against, in this case, your body. Methotrexate is also used as a chemotherapy drug but in much higher doses than I was prescribed.

The doctor warned me that this new medicine could cause hair loss. Huh, hair loss. I had huge patches of hair missing already. What's a little more hair loss?

The doctor started me at 10mg of methotrexate. I think he thought it would be enough combined with the prednisone we were tapering. After a couple of months with no improvement, he upped the dose to 20mg.
It seemed to help but not as much as he had hoped. He really didn't want to go any higher because, let's face it, he's giving me poison to treat my affliction.

Rather than increase the dose, he decided I should take the same amount injected once weekly. I decided to do it myself to avoid weekly trips to the doctor.

After a few months of injections I couldn't believe it. Something was working! FINALLY!

The pain was beginning to ease a little and the rash on my hands, joints and scalp was getting better. No improvement in the rash on my face.

The best surprise? Not only did I not lose hair on methotrexate, my hair started growing back. I was beyond thrilled!