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

@sarahlee2 oh no! I’m so sorry! I’m just wondering out loud … since you tested positive for latent TB, whether IVIg might be a safer alternative to get you started on treatment right now. I don’t think there’s a contraindication as it doesn’t lower your immunity (if anything, you’re gaining everyone else’s immunity). Here, it’s often the path that the insurance companies will make you start with a less expensive treatment before they’ll cover you for a mostly costly one. Many start with MTX, then Rituxan, and then eventually wind up on IVIg, but who knows - having latent TB might be one way you can by-pass all that. I would certainly ask!

Yes! You can do this !! I am rooting for you 😉

@pm56
Yes!! You can do this !! I’m rooting for you !
Lisa

@pm56
Thanks for sharing your thoughts. 🙂 It's really nice to hear from some people who are also facing this diagnosis, as I don't know anyone in person who is dealing with something similar.

Unfortunately I don't think IVIG is available in Pakistan. My understanding is that it's created from plasma donations, and donating blood of any kind isn't super widespread here. It's looking like I'll be able to start the Rituximab simultaneously with the TB antibiotics, although the rheumatologist says I need to first get over this latest bout of gastroenteritis which has had me throwing up all weekend (she also told me today to start being more careful about infections, avoiding large gatherings, etc). She's not sure how much of the muscle damage is going to be reversible though and was saying that from my tests it looks like some of the muscle may have already turned to fat.

I was reading through some of the comments that have been posted in the last few days and was sad to see that it looks like you might also have some irreversible muscle damage. 🙁 Does your doctor think that physiotherapy might be helpful with this sort of thing?

@veganlady
Thank you so much for your very kind and encouraging reply. 🙂 I'm sorry to have taken a while to respond; I came down with food poisoning and it had me throwing up and in the ER for fluids and IV antibiotics.

I don't think IVIG is available in the part of the world that I live in, but I'm grateful that some treatments are available. It's feeling a bit intimidating to start the dermatomyositis treatment while also being treated for latent TB, which I just tested positive for, as the TB drugs are pretty heavy. One of my cousins, who also had an autoimmune disease, just died from what we think was an accidental prescription drug overdose, and so I'm a little worried about over-medicating.

Is it okay if I ask which you were diagnosed with first? The dermatomyositis or the CLL? And how are you doing with the dermatomyositis treatment? What are some things which have helped you to live fully with this diagnosis? My rheumatologist is saying that it looks like there may already be some irreversible damage to my muscles. What are some ways you have adapted to life with these chronic issues?

@sarahlee2 It sounds like you've really been put through your paces lately. Hoping that's it for a while for you now! IVIg is from collected plasma donations, so I understand that it might not be available everywhere. They can usually see fatty infiltration on the MRI imaging, but my understanding is that potentially that can be reversed with PT, depending on the severity. TBH I never felt better than when I was swimming 3 times a week. I was the slowest person in the lanes, but it didn't matter. The 9-year old swim team swam laps around me, BUT - it didn't hurt my muscles or joints as I started slow and just swam steadily. I built from 15 minutes to 45. Had to stop when I became unable to get out of the pool unassisted one day and was too embarrassed to return. Now, unable to drive, I'm sorry I didn't keep going as maybe I' might have retained more mobility. But mine is from steroid myopathy not DM (which is why I advised caution on staying on it for too long - I was on and off . . . mostly on over 7 years . . . and its done irreversible damage to my type 2 muscle fibers). Since I have been advised to stop driving, I started home PT 10 days ago. My PT comes to the house and I work on the exercises in between. Hoping with her help I can strengthen what I have left and then adapt my car so I can regain my independence. I'll get there. It just might take a minute (or two!). Hope you're feeling better fast and that you can get started on treatment so you're back on your feet quickly. Hang in there 🙂

@sarahlee2
Hello! No apologies necessary:) We all have a lot going on.. I'm so sorry to hear you were unwell. I hope you are on the mend. I was diagnosed with CLL in 2018. I was on watch and wait until 2023, when I started treatment via participation in a clinical trial. I finished my treatment in February of 2025, and a few months later I exhibited the symptoms of Dermatomyositis. Muscle weakness, significant skin disease, with hair loss. It was a dark time. My doctors are puzzled by my diagnosis, as typically when it is associated with a cancer, it is usually a solid tumor within 3 years of diagnosis. I underwent scans and blood tests and now they are feeling like the associated cancer is likely the CLL. This is a rare combination for sure, but has happened. We will continue yearly scans and blood tests though for the next three years just to be vigilant. It is possible that the immune system dysfunction from CLL as well as the medications on the clinical trial may have cause changes to my B and T cells that resulted in the Dermatomyositis. We will likely never know for sure. Its been a long 8 years for sure. But overall, I am thankful for the good quality of life I have been given even through these ordeals thanks to a strong support system, spiritual care, and trying to maintain a positive outlook and gratefulness to be honest. That is not to say that I don't experience fear, or depression, or disappointment or discouragement. I have and still do. It is especially difficult around appointment times where I have the most anxiety. The first three months around my diagnosis were especially difficult. I could not even apply the prescribed cream to my body, and relied on my husband for so much of regular daily living. I could not dress myself, slept a great deal due to the debilitating fatigue, suffered from a burning itching rash all over my body, and had my hair falling out in clumps. I modified my shower with seats and grab bars, my husband helped me with dressing and I mostly wore elastic pull on clothing. I could not cook or even wash dishes or brush my teeth due to upper arm weakness. So, we ate a lot of salads and smoothies and very easy heat up meals. It honestly was the darkest time of my life. Once I started on the Plaquenil though things slowly improved and I noticed as each week progressed, I was able to do a little bit more. Today, I have been on Plaquenil 6 and a half months and have had 2 IVIG treatments. I am able to do most of what I did before my diagnosis, with a little more stiffness in the morning or after being sedentary for even a couple of hours. My hair is starting to grow back but I fear it will never be the same in thickness or texture. I have not had any side effects noticeable from the Plaquenil. The results of this treatment have been nothing but positive. It did a lot for my muscles and I would say my strength is very live able, even if it isn't back to baseline for me. It hasn't done much for my skin disease though. I can live with where I am and continue to go to the gym 3 x a week to do weights and try to gain back strength. I don't know that I will ever recover all that was lost, but I am so much better and can now care for myself normally, cook and clean the house again, and am back to work.

Prior to my diagnosis, I was very active. I did some activity daily. I do believe this helped me. Examples would be :A long 3 mile walk, pickleball with friends, or riding bikes or swimming. I also did QI Gong for flexibility. Once diagnosed, even in my exhaustion, I still moved every day, though modified, whether it was a short walk around the house, or down my driveway, or yoga stretching, or doing some short 5 or 10 minute stretching or 2 lb weight exercises. I was determined to keep what function and strength I could. I listened to my body though. If I was tired I gave myself permission to rest. I tried to be in nature as much as possible, even if I just sat on my porch, and most importantly to me anyway, I prayed. I prayed a lot!

I went whole food plant based in 2018 after my CLL diagnosis. After this muscle loss associated diagnosis, I have added back in occasional eggs, & fish to try to increase my protein intake more easily. So, we basically follow a Mediterranean diet now with most protein sources still coming from plants. I take Turmeric Supplements and Omega 3 plant derived supplements daily as well as vitamin D and a Multi Vitamin. I drink a glass of green tea a few times a week. I try to spend time outdoors and with my family as much as possible as they raise my spirits and make me laugh.

Something I started doing when I was diagnosed with CLL and then Dermatomyositis, was to research autoimmune disease and things that increase inflammation in the body and promote gut health as we now know the center of our immune system is the gut. I know that diet, and exercise and supplements is not going to cure any of my conditions. However, I do believe that they are helpful to my overall health, my levels of inflammation, and how my body recovers and handles stress, and also gives me something about this disease that makes me feel like I have some control.

One of my favorite doctors who talks and researches autoimmune disease is Dr. Brooke Goldner. She had Lupus and was able to reverse her disease through a combination of meds, diet and lifestyle. She had the best attitude towards her disease, and it really inspired me. She says that she decided early on that she would live her best life and not put off doing things because she was sick. She said she would be sick no matter what, and she could be sick and enjoy what she could, or be sick and not try to do anything , and just let the sickness take over her life and relationships. That really resonated with me, and I am trying to be that kind of a person.

I hope this helps you in some way, and that your road to recovery is near.

Lisa