After struggling for breath for the last couple of months, I am finally getting some serious relief from a combination of hydrocortisone and Zyrtec. Hydrocortisone (HC) is synthetic cortisol, a substance I have a love-hate relationship with after Cushing’s. After getting out of the hospital about a month ago and starting an HC regime at home to try and keep the “carcinoid syndrome” symptoms (if that’s what they are) – breathing trouble, flushing, coughing – under control I was starting to feel like I was getting Cushing’s again. I started to get puffy, my buffalo hump started coming back and I started breaking out in acne again. Been there, done that, don’t want to do it again. I wanted to get off the HC as quickly as possible, but was facing the choice of living with the unpleasant side effects of the steroids or not being able to talk or move around without coughing and gasping for air. Steroids were winning by a mile, but I was not happy about it.
After doing a bunch of online research and upon the recommendation of some carcinoid patients, I added anti-histamines to the mix. Just as the tumors causing Cushing’s spit out ACTH or cortisol, other neuroendocrine tumors spit out serotonin and histamine. As a result, plain old over-the-counter anti-histamines help a lot of patients manage their symptoms. And, whoa, what a difference a little Zyrtec has made! It has been nothing short of miraculous. I am on 25% of the HC dose I was on a few weeks ago and am somewhat optimistic I will be able to get all the way off “the juice” by the end of the month. What’s even better is that I can almost talk and move around normally. If I get too excited or talk a fair amount, I still cough and flush. But I can walk around the house, do a few things outside, and finish complete sentences. Last night, I even went to a movie with M and a friend and managed to get there and back and actually talk a little without turning into a purple, wheezing mess. Just trying to get dressed to leave the house last week would have done me in. Now, I feel like a living, breathing human being again and not like a caged animal.
Now that I have a drug combo that is making my life tolerable, my sense of optimism is coming back too. I don’t feel nearly as hopeless as I have been feeling over the past few weeks. I really think I am getting close to figuring this out. Scratch that. I think I figured it out in January and I have at least convinced the Wizard another neuroendocrine tumor might be my issue. Now, I think I am close to getting someone else to DO something about it. Instead of spending all my energies figuring out how to make it through the day, I have the second wind I need to implement Plan D.