OK I guess this is a personal diary because although I am extremely active politically I find myself lately at point non plus specifically for personal reasons.
I have Crohn's disease and I've had a major relapse, or what I call a "spectacular crash and burn" where despite warning signals and many attempts to avert my exact situation nothing worked. Yeah, I saw the wall coming, I hit the brakes hard, even the auxiliary ones and yet SPLAT!
So I eneded up in the hospital loaded to the gills with dilaudid for pain, Prednisone for inflammation and various vile potions to get my "sewage" problems under control so that an X-ray could see inside and give my doctors a better idea of why yet again I found myself in a place that I hated.
I don't hate the hospital because it has no purpose. I'm a nurse and generally I prefer to be on the opposite side of the stretcher helping those that need it. I really hate being on the side of the stretcher needing that assistance. No, more than that it is difficult for me to admit I need help, never mind actually taking it.
But this visit I determined that I would behave. I would be the patient. I would listen to the doctors and nurses rather than argue with them about the details of my treatment. Well it worked! Kinda, sorta but mostly except when they decided (in the absence of my GI doctor- who had the nerve to be off for Memorial Day!) to stop my Humira.
What is Humira? And why would they stop a main part of successfully keeping me in remission for years. Let me explain: there is a class of drugs called biologics including enbrel ,Remicade , and Humira.
They all have one aspect in common they are anti-tumor necrosis factor blockers. Because of my Crohn's disease, as well as my Rhuematoid arthritis, I have too much circulating tumor necrosis factor. So what the heck is that when it's at home. The simplest answer is that it is part of a normal response that your immune system, in this case your lympohocytes produces to keep you from developing tumors and other assorted health disasters. Cytokines are normal proteins that assist in this process. Tumor necrosis factor alpha.
So what's the problem? Well in the case of someone (moi) in the throes of an auto-immune disease such as Chrohn's, Rheumatoid Arthritis, Lupus, psoriatic arthritis, Reiter's syndrome etc... we all have too damn much circulating TNF factor and it attacks our joints, our GI tracts, our eyes and our skin - believing that we are the enemy. These cytokines leave much damage in their wake.
An overly hyped ctyokine response was responsible for many of the deaths in 1918 from the Spanish flu pandemic and a "cytokine storm" or a severe immune reaction to the unknown quantity of new virus did its damage before science had quite caught up with it yet. It did of course, and this is how life has changed from someone who lived on high doses of Prednisone and a combination of low level chemotherapy using Methotrexate, a drug used in high doses for certain cancers and given IV on a protocol. I take it weekly orally, at a dose of 15 milligrams because it is thought of as a "bridge" drug between the biologics I take, and as they lose effectiveness over time the MTX provides some coverage until the next dose. That's right the drugs like Humira etc...are only effective for varying amounts of weeks before your immune system goes right back to producing still more tumor necrosis factor. Blech! So some are taken at home subcutaneously and some are given IV over several hours - the doctor and your response determines which one you use.
I used to have a Remicade party at my Rheumatologists every 6 weeks with people in a similar position as I, most had straight up RA, others had psoriatic arthritis etc...but we were all there in our lounge chairs for 3 hours with blankets ( it can make you pretty cold and sleepy) and we brought our lunches and chatted on diverse topics often cheering on the newbies who were unsure if this would even help them. It was great and Remicade gave me my life back. I exchanged three hours of time ( and some down time later at home) for a pretty much symptom free six weeks, and best of all no Prednisone!
So what happened? Well, Remicade was a fairly new agent in 2000, not widely prescribed because the patient had to meet many criteria to get insurance or Medicare approval. But I met the criteria and so I was put on a regimen that eventually worked very well for me. BUT...Remicade is a chimerical drug made up of part of mouse DNA and part human DNA. My doctor worried about this, but I hushed him because I was fine, I was doing well ...why worry?
Indeed. In 2008 the whole party came screeching to a halt and before I could even say "Oh, Noes," I had crashed and burned. Nausea returned full bore, I was fatigued, my abdomen swelled to a convincing 6 months or so pregnancy belly. And I was placed on high dose steroids in an attempt to avoid the hospital.
So follow me over the fleur de kos for the rest of my journey.