Hello Pauline,

Thank you for your response. Its good to be able to speak with you!

I am so sorry about the journey you have been through. I can only imagine how frightening it has all been and how much uncertainty you must still feel. I hope that your holiday with your children was enjoyable. It is not silly at all to want your time with them too feel joyful and to have normalcy. We are mom's, and never want to worry or burden our children. We want to be the strong and healthy ones so that we can always be there for them. It is my worst feeling of anxiety when I feel I cannot be present for them and show up for them in the way they were used to.

I also understand what you mean about the fear that can arise the more you read about this disease. I certainly also felt that way when I was diagnosed with CLL. I am heartened though to have this and CLL at a time when medical research has and continues to provide more and more options to improve our quality and quantity of life with these conditions that even 10 years ago did not hold such promise. There is hope for a good life that is pretty close to normal once we find a medication regimen that gets the inflammation of our disease under control. Unfortunately, each persons combination is usually found by trial and error and can take some time find. In the meantime, I try to focus on the hopefulness and positive aspects of the future and daily improvements no matter how small, and am grateful for the support of others who have gone before me in this journey.

I have read a great deal, and I am wondering if these new immunotherapies which are intended to block specific aspects of immune cell behaviors and replication also cause specific changes to the cell itself which then results in those cells not looking the same and our bodies then attacking them thinking they are foreign, and no longer our cells. Perhaps a new type of protein to the cell surface? We will likely never know, but it is a theory I have. Also, so much of these autoimmune diseases seem to pop up in women around times of key hormonal shifts, such as menopause, pregnancy, puberty.. Hormones profoundly affect the immune system and this is why I felt my starting HRT and having my first known symptoms of this within 2 weeks of my first dose is a likely contributor.

Of course, I also think that there must be a predisposition to the disease in the first pace as this does not happen to everyone who takes these immune therapy medications. It is very complex and the research just isn't there yet. However it is hard to not keep trying to understand the why.. at least for me it is.

I too had all the cancer screenings. Mammogram, Colo Guard, CT of Pelvis, Abdomen, Chest, and an Ultrasound of the pelvis as well as ovarian ca tumor markers. Thank fully, they were negative and I will get these tests every year for the next 3 years even though it is possible that my CLL which is a lymphoma type of a blood cancer was the cancer accompanying my Dermatomyositis.

I did have several of the tests for Dermatomyositis. Of these, my ANA was elevated, Creatine was low, My skin biopsy was non descript, my markers were negative with the exception of TIF-1. I never had an EMG or a muscle biopsy as my symptoms were so textbook, my Rheumatologist, and Dermatologist both agreed that any results would not affect any treatment decisions or add much value .

I have had multiple bone marrow biopsies which have a horrible reputation for being painful, and I did to find them to be as bad as I worried they would be. So, hopefully if you need a muscle biopsy you will find the fear to be worse than the actual event. I always would get myself worked up for days before the biopsy and was so relieved it was over. I did ask my doctor for anxiety medication and pre med with pain medication prior and this was helpful.

I'm so sorry to hear of your hospitalization. I am grateful the IVIG was helpful to you! It appears from what I'm reading that it is a very effective and well regarded treatment for our disease, especially the scalp issues and hard to treat skin problems that our marker seems to have more of an issue with. I only receive a once a month infusion and my second infusion will be on February 3rd. I have seen an improvement in my stiffness and ability to move and bend and even walk more naturally and without the limitations and discomfort I had before. I'm hoping that my miserable scalp will be improved in time with more doses.

I'm so sorry about your recent development of the clot in your brain.. As clots are a possible side effect of the IVIG, are they thinking it is related to your IVIG treatments? When is your angiogram?

Are you currently taking any medications other than steroids? Are you employing any natural or lifestyle interventions that you are finding helpful at all?

I don't know if you are a person of faith, but I am, and will pray for you in this, and that there is the best possible outcome and that your team will be able to determine the best way to get your disease under control.

Best,
Lisa