@sarahlee2
HelloSarahlee2,
First, let me say that I am so sorry that you are going through this. Especially so young. I know this feels incredibly scary and everything feels upside down right now. Having said that, please know that the treatments and advances in this condition are moving faster than ever imagined. The understanding of the drivers of inflammation that causes our condition are being aggressively studied and this is now a condition that can be overwhelmingly well managed.
Some people even experience a full remission after 3 to 5 years of aggressive therapies. Everything I have read tells me that Anti-TIF1-\(\gamma \) positive dermatomyositis (DM) can be successfully treated, with many patients achieving remission through aggressive, multi-modal therapies.

While associated with a higher risk of malignancy, especially in adults, treatment is highly effective when it involves immunosuppression (steroids, IVIG) and treating the underlying cancer.

This type of DM does have its challenges though. There are many studies with statistics on the internet . One such study below states that the Prevalence of malignancy was 42.6% among patients with Anti TIF1-γ.https://www.sciencedirect.com/science/article/abs/pii/S1568997223001982

However, if these statistics are to be believed, that means almost 60% do not. We do need to be more vigilant though than other markers, with special attention paid to skin, GI and reproductive cancers as well as lung and breast cancers being the most prevalent when cancer does arise. TIF1-\(\gamma \) is a protein involved in regulating gene transcription. In cancer, mutations or loss of this protein might trigger the immune system to produce antibodies that then cross-react with skin and muscle tissue.
Also, after 3 to 5 years studies show that the risk returns to that of the general population, so it seems the risk does not last forever.

I myself have a history of blood and lymphoma cancer , a chronic cancer called CLL that affects my B cells and T cells and therefore my immune system is dysfunctional. I am currently in remission from my CLL as I completed immune therapy treatment a year ago.

Treatments such as IVIG are incredibly effective against our type of Dermatomyositis and combat the inflammation while adding some protection to our immunity instead of compromising our immune system. Plaquenil does help immensely but with the skin symptoms it just doesn't knock it out.

There are many effective treatments to suppress our body from attacking itself in this way, but there is a drawback of immune system suppression which increases the risk of infections and in some cases lymphomas, because suppressing the immune system which is designed to go after cancers and foreign invaders is suppressed with these meds and can have these unintended consequences.

No disrespect to your rheumatologist, but you may want to get a second opinion if you haven't, to ensure that you are comfortable with the options before you. Steroids really shouldn't be a long term option. Methotrexate is a frequent recommendation, but there are many more options out there, and it's good to know what's available. I have a very good rheumatologist, but the one thing I learned in my CLL journey is the importance of being an advocate for yourself, and seeking out specialists in their field. General Rheumatologists may be very good, and follow the algorythm, but there is no substitute for someone who lives and breathes your disorder, and has their pulse on the latest research and advancements. I have a very good Rheumatologist locally, but still went to the Cleveland Clinic to get a 2nd opinion from a rheumatologist very acquainted with our disorder.

If you go onto https://www.myositis.org/ you will see several opportunities to read and see videos of patient stories and outcomes as well as their journeys. Many, many people are living well with this disorder and from what I have read and learned, the first few years are the most challenging and anxiety producing as we try to find the right med and treatment combination for us. Each person is a little different and has to go through some trial and error.

I try to think positively every day and tell myself I am one of those people. I believe in the power of positive thought and the importance of surrounding yourself with people who speak in terms of healing and living with good quality of life.

Our lives may not look like the picture we envisioned for ourselves. Let yourself grieve that and seek out all the support you need . This site is a good start! You aren't alone in this.

Lisa
https://www.myositis.org/patient-support/support-groups/find-support-group/
https://www.myositis.org/category/patient-stories/
https://www.myositis.org/patient-support/living-with-myositis/