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I wrote recently about making many poor decisions that left me in a terrible flare. This flare seemed to me to be the mother of all of my flares. It wasn’t the most painful, but caused me the most distress. Having already been in a MCAs flare (and having no prednisone), I started laying off of some of my Gabapentin and Tylenol.
The itchiness seemed to be bad, but not impossible to deal with. and I seemed to be handling the medication changes without any complications. Then I hit a very large and heavy wall.
Everytime I thought that it was past, it was a dirty trick. I would immediately need to go back to 50 mg of Benadryl every 4 hours. To top it off, the loss of Gabapentin caused me to have neuropathy all over. I felt the electric-like shocks amidst the horrible itching! Ugh!
I again decided to keep taking all my meds at full doses and Benadryl every 4 hours no matter what. Now, the Benadryl was wearing off after 2-3 hours. So, I decided to read everything that I could about treating MCAS.
I was surprised at some of the things I was reading. Many of the experiences of people with MCAS sounded similar to mine, but they were all taking more medication than I do. Of course, there is the standard trio: 2 Zyrtec, Singulair, and Famotidine. But there were many other drugs that were often added, especially in a flare.
There were infusions, OTC antihistamines, cromolyn, and more that provided help and relief for patients that needed extra treatment. I know that I need to see a really good specialist, because I haven’t seen one who will really find a treatment that offers emergency medicine. Otherwise, I’m going to need to go to the ER.
I’ve been beside myself with this. My balance has been bad, too and I’ve been using my cane. Thankfully, hubby has been taking good care of me.
The longer I have all these illnesses, the more I realize how little I know and understand them. Osteoarthritis is fairly black and white, but not MCAS. Mast Cell Activation Syndrome was just named in 2006 (I believe). There is much to be learned about this condition and many doctors don’t have a clue.
Some doctors don’t even believe that it’s a real condition. Just as in Ehlers Danlos Syndrome (hypermobility type), there isn’t a single blood test that can diagnose MCAS.
Experimenting with new medications can be very painful. The new medicine can make me feel worse than the old one. But the ‘practice’ of medicine means that I may have to feel worse before I feel better. I don’t know how or who, but I need to find an immunologist who might be able to help me.
Do you have MCAS? What treatment has been helpful to you?
@2022, copyright Lisa Ehrman
Disclaimer: This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please contact your personal physician.