Anyone here have Cold Agglutinin Disease

Welcome @hazelschmidt107, I see you are trying to connect with other members who share your diagnosis of Cold Agglutinin Disease (CAD). This is a rather rare autoimmune condition according to the National Institute of Health. https://rarediseases.info.nih.gov/diseases/6130/cold-agglutinin-disease.

@hi2l, @leelaguna, and @coldagglutinin01 have mentioned having Cold Agglutinin Disease and may have some suggestions or information to share with you.

Hazel, I was diagnosed with Cold Agglutinin Disease a year and a half ago. I’ve been checking on this website for a long time but have never seen anyone with CAD.
My first treatment was a round of Rituximab. That really was not helpful in bringing up my hemoglobin. I then had a round of Bendemustine and Rituximab combined. I found out in November that this treatment did not help my red blood cell destruction. Tomorrow I will have my third Enjaymo infusion. I feel like I’m beginning to feel better and am able to do more.
I’m sorry to hear you’re having joint pain. I do have lots of side effects, but I don’t have joint pain.

I joined a group on Facebook that is great and gives you loads of information. I’m on my second infusions of Ritux and hoping it will help.

I just joined today, May 28. I was diagnosed with cold agglutinin disease in 2015. I experience joint pain as well.

Welcome @tobytink, The National Organization of Rare Disorders has some information on cold agglutinin disease that might be helpful - https://rarediseases.org/rare-diseases/cold-agglutinin-disease/. You might also find the following organizations websites helpful for more information.

--- Cold Agglutinin Disease Foundation: https://coldagglutinindisease.org/
--- The Autoimmune Association: https://autoimmune.org/

Have you found any treatments or therapies that help?

Hi,
I just found this group. I have CAD as well. I was diagnosed on 2020 during the height of the pandemic. That was fun. I have not had joint pain but when I start to hemolyze my heart will pound, I become breathless and insanely weak. Winters are tough but the seasonal changes are the hardest to adapt to. A/C is my enemy.

@alithea38. Welcome to Mayo Clinic Connect! Members here try to encourage and support each other thru their common illnesses. What accommodations have you had to make with your family and job because of CAD?

I have primary Cold Agglutinin Disease. I was diagnosed with AIHA in 2014 and was told about CAD in 2021. I have had many blood transfusions and Rituxin infusions since 2014. My disease appears to be getting worse because now I am in hemolytic crisis every year and sometimes less than a year. I have never fully had a workup for this disease. I am desperately looking for a CAD expert in the Ohio area. Any suggestions???

Welcome @drdixievet310, The Cold Agglutinin Disease Foundation lists some specialist for the Ohio area on their website here - https://coldagglutinindisease.org/specialists. Have you considered seeking help at a teaching hospital or major health facility like Mayo Clinic?

Thank you for your reply! The list needs to be updated. The doctor's are hematologists/oncologists, but they are not specialists in CAD / AIHA. I did find one at the Cleveland Clinic, but they are not on the list. I think our foundation needs to update the list. We have a teaching hospital nearby, but again, the doctor that was recommended from the foundation is unavailable and the other doctor isn't anymore special than the doctor I currently see. Hopefully the doctor at the Cleveland Clinic is good and if so, I will recommend his name for the foundations list.