Does it seem like autoimmune diseases are on the rise?

Thank you for that info. I am about to give up. I'm disgusted with so many doctors and many of their nonchalant attitudes, many doctors not listening or not believing the symptoms and trying to blame it all on anxiety

Thank you Becky. I’ve actually watched Ms. Brea’s Ted Talk a couple times…very sad, but her determination is astounding. It’s on my list to watch her film. I haven’t read Brain on Fire, but did see the film and read an article about her. Another incredible journey. Our bodies are definitely remarkable, albeit not always in a good way. There are certainly doctors and researchers willing to think out of the box and do all they can to help their patients. As a liver transplant patient, I found A Surgeon’s Cut, Ep. 3, about Dr. Ascher, the first female liver transplant surgeon, to be incredible.

This is another excellent book. https://donnajacksonnakazawa.com/autoimmune-epidemic/

@joannemm30809 finding the right doctors seems impossible at times, doesn’t it? I found this article in my stash of articles this morning. Hope you find some good info
https://rarediseases.info.nih.gov/guides/pages/25/how-to-find-a-disease-specialist
Let me know if it’s helpful

I was first diagnosed with ITP (Immune thrombocytopenia) in 2019 after a pre-surgery blood test showed a platelet count of 10. After being referred to a hematologist further testing showed I also had CAD (Cold agglutinin disease) and MGUS. I've been treated for the ITP with prednisone, ivig, Promacta and now Nplate infusion. My platelet count with Nplate is now at 70 and my bruising and bleeding have gotten a little better. As I understand it, there is no treatment for the CAD or MGUS. I'll be 77 in December. I guess at this age all these conditions should be expected but I'm wondering if anyone has been cured of any of these autoimmune disorders.

Hello @hi2l and welcome to Mayo Clinic Connect. You asked a very good question and I don’t think anyone has an answer for. Most autoimmune diseases are considered chronic diseases that can be managed, but not cured. Many people, like my sister, go into a long term remission, when everything is OK as long as they stick to their treatment plan. I haven’t been so fortunate. I’m still being treated and relying on MRI’s to see how I’m doing. But, I’m doing OK.
I included this link to a discussion about MGUS that might interest you. You can read it and post any questions or comments that you’d like
https://connect.mayoclinic.org/discussion/mgus-bgus-diet/

Are you still on prednisone? And you’ve made it safely through covid?

Absolutely......my whole family has symptoms of this situation......scientists need to study this so much more. Prednisone is a no, no yet it works so well, what is the answer without the cost of a new drug that will make people go broke???

Prednisone was first treatment for ITP and did nothing but cause intense itching all over. Did Ivig next and platelet count went up to mid 20's. Tried Nplates and saw great improvement to 110. Continued Nplate for a few months when hematologist decided to try Promacta instead, only to see platelets drop to 50-60 and significant out of pocket copays for the prescription. When I complained the financial counselor arranged for free Promacta from manufacturer. After a year on Promacta I also started again receiving the weekly Nplate infusions of 315mmg and platelets went up again to a little above 100. This past August I was told to discontinue the Promacta and just come in for weekly Nplate infusions. Platelets seem to be holding in mid 70's when tested with citrate otherwise clumping will not show any platelets in CBC. I guess I'm lucky to not have any symptoms other than a bruise here and there. I'm still sensitive to the cold because of CAD but I wear warm cloths in the cold weather and get by. I'm not sure what the MGUS has to do with the ITP and CAD. Is it the cause or just another issue? But like I said before I would have never known anything was wrong with me until the low platelets showed up on a routine CBC. And yes, we made it safely through covid. My wife and I both received the Pfizer vaccinations and booster.

Hi21, you may also wish to join this related discussion:
- Autoimmune disease and thrombocytopenia https://connect.mayoclinic.org/discussion/auto-immune-disease-and-thrombocytopenia/

Went for my Nplate infusion this week and was pleased to finally see a platelet count above the normal. The count came back as 145x10*3/uL This was with the use of a Citrate Tube. The CBC results were 114 but the platelets are clumped which makes it impossible to get an accurate count hence the citrate tube draw. Anyway, it's nice to see something working. I started weekly Nplate infusions a little over a year ago and in February the hemato;ogist suggested changing the infusion to every other week since I had missed the last week because I was on vacation and the count after my return actually went up. Since then the counts got higher and higher with each new count. Is it possible that the weekly Nplates were over stimulating the production of platelets and my bone marrow could not keep up. I see the hematologist in 3 weeks and am thinking of asking if it would be safe to quit the Nplates and see what happens.