Anyone here with Anti-TIF-1γ Antibody-Positive Dermatomyositis?

@kobebeef2026 yup - I’ve been on Boniva preventatively for 7 years because of it.

@pm56
Thanks for the encouragement; I really appreciate it. 🙂 It sounds like you have had a rough run of things. I really hope you get some relief soon and can be well.

I saw the rheumatologist again yesterday; she said that right now the plan is to start steroids and do two infusions of Rituximab. After that I will start methotrexate and then hopefully will stops taking steroids. They will also repeat some of the oncology blood work again in two months. Waiting for the result of my tuberculosis test before starting Rituximab (I'm American, but I live in Pakistan, and so tuberculosis is a bit more common here). Hoping that the planned treatment won't make me too immunocompromised or sick.

@sarahlee2 it’s a common protocol to do the TB testing before starting a new biologic drug. I’ve had to do it here as well (I’m from the UK but living in the US). They make me do it every time I switch to a new biologic too.

I didn’t have any serious issues with Rituximab, so I’m keeping my fingers crossed for no side effects for you either. If I remember correctly, I did my loading doses and then switched to every 6 months. Hoping you have no issues with the MTX either. Just don’t forget to take the folate with it as it helps tremendously with the side effects. Wishing you the very best with the upcoming treatment 😊

@pm56
That's good to hear about the Rituximab. 🙂 It can be infused through a normal IV cannula, right? No need for a porta Cath?

Is it okay for me to ask what the uterine biopsy that you mentioned is for? That wasn't part of my oncology screening. They did do an ultrasound. I'm not sure how well it was done, since the sonographer did a trans abdominal ultrasound with my bladder totally empty, but hoping she didn't miss anything important.

@pm56
One more question- while on Rituximab or methotrexate, have you needed to avoid being around sick people because of the immunosuppression?

@sarahlee2 yes - regular cannula for the Rituximab infusion. Bring something to do as I remember it being quite a long and boring infusion!

The uterine biopsy was done as part of my Tif-1 oncology screenings. I’m not sure why I was advised to get a uterine biopsy while you had a trans abdominal ultrasound - it could be our ages, with you being much younger at 30 and me already in menopause at 57? But I think there’s no harm in asking your doctor why “someone you know” with the same condition was counseled differently. It’s an valid question 🙂

With regard to avoiding people, again I’m not the right person to ask - I got Covid 5 times despite being vaccinated and boosted. I got DVT’s from Covid, and then I developed a mystery rash, lung nodules, more joint pain, and I was never the same. I stopped attending crowded places in the winter, declined invitations to weddings and parties unless they were in the summer months - not so much because the medicine made me immunocompromised, but more so because the repeated bouts of Covid made my symptoms more difficult to manage, so I just didn't want to risk going to big events where I’d be more likely to be exposed.

I still attend events in the spring, summer and early fall, but if I have to go anywhere at anytime of year where people are sick (like the doctor’s office, an urgent care center or the hospital), I wear an N95 mask to protect myself, wash my hands frequently and try to avoid touching my face. I get Covid infusions, called “Pemgarda,” every 90 days to try and mitigate the risk. My best advice is see how you go. If you’re doing okay on the meds and still able to go out and enjoy everything - don’t give up what you enjoy. If you start getting sick more often, try to find a balance. I am hoping that if I can resume IVIg, I will get everyone else’s immunity and eventually will not need the Pemgarda and can resume enjoying weddings and everything else during cold and flu season. A girl can hope!!🤞

@pm56
I unfortunately have tested positive for tuberculosis. 🙁 I think it might be latent, as my recent chest ct scan was clear. Really hoping I will still be able to get the Rituximab. Internet seems to be saying that it's okay to get Rituximab with latent TB as long as I take prophylactic antibiotics for it. Will see rheumatologist tomorrow to discuss it.

@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/

@pm56

Hello Pauline,
It's only natural to feel down with all of the challenges you have had to overcome as well as the ones you are facing now. I remember one particularly bad day, praying for God to have mercy on me. Sometimes things feel so insurmountable, and hopeless. I'm glad he IVIG will still be possible for you. I have read that it takes several doses to see results. I just had my second dose. I haven't noticed a huge difference yet but I remain hopeful.

I went whole food plant based, no processed, organic when possible back in 2018 when I was diagnosed with CLL. It made a significant difference. Most people with my markers progressed to needing treatment in @ 3 years. I went almost 6. I was obsessed with being perfect with it, and really never cheated, convinced my health would go downhill quickly if I wasn't perfect with it. I also started going to the gym daily, I juiced, took multiple supplements, underwent treatment, and then still developed Dermatomyositis. It was after this diagnosis, that I decided to do my best with it, and actually adopted more of a Mediterranean diet, and added eggs and fish back in weekly to try to help with muscle re building as I lost so much muscle in this condition . I do think its part of the equation, eating whole foods and not processed junk, basically giving your body what it needs to function at its best, but I also think there are plenty of things out of our control, that also factor in. I also try to do some physical activity every day. I'm no longer focusing on perfect, but just the best I can and that changes depending on the day. Some days are better than others.

I hope your PT brings you an increase in strength and independence. Know that I am praying daily for you!
Lisa

Thank you for the positivity Lisa. It came at a welcome moment. Just got back from the neurologist and the EMG confirms the severe proximal myopathy seen on the biopsy. He’s saying I’ve lost muscle and it can’t be replaced. I’ll have to try to strengthen what I have, and then be assessed by a driving specialist who assesses people who’ve had strokes, etc., to drive. If not, I’ll have to get my car adapted and then get re-certified to drive the adapted car. Not at all where I thought I’d be at 57. But spend too long searching for a diagnosis or a drug that works while on steroids - and this is where you wind up. But I’ve processed, I’ve taken a deep breath, and now it’s upwards and onwards. I’ll spend this cold weather gaining strength. I’m manifesting that I’ll be driving by the summer 🚗 😊

Thank you again for the encouragement and prayers XO