Skip to main content

Endocrine and Rheumatology Follow Up Visits

I had my endocrine and rheumatology follow up appointments last week. I was scheduled to see endocrine anyway, but the rheumatology appointment ended up happening a few weeks earlier than I was scheduled to see them. 

My endocrinologist was stumped about all that had gone on at the hospital - so many tests and such severe symptoms that it seemed impossible that they found nothing that would explain what was going on.  My hemolysis seemed to get a lot worse while I was off dapsone, my hemoglobin dropping below 10.  Because of all this, she thought it was reasonable to stop the dapsone all together, as it may be a cause of the symptoms I have had, but wanted me to check with rheumatology first to see if they agreed.  I also had labs to check that my ACTH came down, and my electrolytes were normal.  

I emailed my rheumatologist to see if he thought it was okay to stop the dapsone, and he asked me to come in the next day to discuss options.  Immediately I knew I didn't have a lot of options if they wanted me to come in the office, usually this kind of thing can be done over the phone or email.  The drug he recommends is Rituxan, which has to be infused via IV.  It comes with a risk of severe allergic reaction, infection, and my most hated side effect - nausea.  I can deal with pain no problem, but make me too warm or nauseated - forget it.  

I asked if there were any other options, like plasmapheresis, which where they take my blood plasma,  which holds antibodies that attack my red blood cells, and infuse a donor's plasma which has correctly functioning antibodies. He didn't think this would be a good option because I would need either a central line, or PICC line, to handle the frequency of these treatments, which could be as frequent as once a week.  Having these lines also means increased risk of infection, blood clots, and of course, more time in the hospital. 

I am very hesitant to try the Rituxan, because of the dangers and side effects, but my only other option would be plasmapheresis, or a bone marrow transplant.  He did say we could watch my blood counts for a while and as long as my hemoglobin stays above 10, we can wait to treat this, but I have a feeling the hemolysis is a part of the hypoxia and shortness of breath. 

I just don't know what to do.  If any of you have experience with Rituxan or hemolytic anemia let me know!  

Comments

amazon audible

Popular posts from this blog

Cushing's Awareness Challenge - Day 9

The only potentially permanent treatment for Cushing's is surgery.  Whether you have a pituitary tumor, adrenal tumor, or ectopic source of ACTH, most often, you will eventually need surgery.

For me, the first step was a pituitary surgery to try to remove the tumor in my pituitary gland. They went through my nose to access the pituitary gland, which means you have no visible scars after.
I was very nervous heading into the surgery, but didn't have much time to dwell on it, as my surgery was scheduled about a week after my IPSS.  I talked to a lot of people before, about their experiences, and heard vastly different stories from each person.
The only thing I remember from before my surgery was being rolled down what looked like a basement hallway (all concrete), while passing maybe 30 operating rooms.  I saw patients in the hallways on stretchers waiting for surgery, I saw into the small windows in the doors to operating rooms, it was a very scary experience.  Obviously, not ev…

Cushing's Awareness Challenge - Day 4

I have often said, I wish I had cancer instead.  Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?  
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was.  I wouldn't be questioned by my boss when I called in sick.  My friends and family would be more supportive.  My doctors wouldn't question my symptoms.
Maybe my life would be easier.
But, maybe this would not be true.  I am not looking to find out.  Chronic illness is lonely.  It seems, from the outside, that cancer is not.  Most people know someone with cancer.  Most people know what cancer involves.  Endless appointments, surgeries, maybe even chemotherapy or radiation.  Cancer is life threatening. Did you know that a lot of chronic illnesses involve all of the same things?  
With Cushing's, a lot of people have multiple surgeries.  I have had 3 directly related to Cushing's, and…

Cushing's Awareness Challenge - Day 12

Today's post is a little bit out of my comfort zone. We're going to talk about weight.
One of the most common symptoms of Cushing's is weight gain.  Some people only gain 30 pounds, some gain hundreds.  I always have a hard time quantifying the exact amount I gained because I was a teenager, or even a young child when I first had Cushing's symptoms.  My best guess is about 150 pounds, only because that is close to what I've lost after treatment.  
When you weigh almost 300 pounds, people treat you differently.  I know this, because I've also seen how people treat me now.  
I was obese, due to Cushing's, throughout college. In my opinion, this is one of the most difficult times to be heavy. My first year of college, I was often left out of plans.  My two roommates were very close, and I always felt like the third wheel.  One of them even left a letter she had written to a friend out for me to see.  It was one of the cruelest things I had ever read.  She was wis…