I know that I’m lucky when it comes to medical treatment, and I’m ever so grateful for what I’m given.
That being said, it’s still scary whenever treatment plans change. I’ve been very sick the last few months, and unfortunately came pretty close to being admitted full time to the hospital. That was scary. I preferred to treat at home, though another hard crash/flare up and that likely wouldn’t be MY choice again.
A few weeks ago, after multiple rounds of antibiotics doing nothing for my system, and even having an allergic reaction to one, we decided to put me on steroids again. This time I agreed to 30mg a day, taper down on a 12 day program; 20mg a day for a few days, then 10mg the last few days. Two days from now that program would end with me taking my last 10mg pill.
The first day I took prednisone, I was BACK! Completely different person than I’ve been the last 5/6 months! I was up and going for days straight! Sleeping normal at night, it was like a miracle drug entered my system! The swelling in my body was gone within my first 30mg, and the new few days I looked better and better!
Then I tapered down. And it was hard. Just 10mg down – From 30mg to 20mg. My sinuses started to swell again. I saw a specialist (ENT) about my chronic issues in my nose and throat. He said it was the Trigeminal Neuralgia and Fibromyalgia. These two, along with my rheumatiod disease, I’ll deal with the discomfort and pain in my head and face for the rest of my life. Fun.
Bedtime came, and I was exhausted but couldn’t sleep as well. I was exhausted after doing something as simple as eating a piece of fruit. Who needs to nap after eating a handful of food? This lady!
So, before tapering down again, I called and left a message for my Dr, letting him know my symptoms were returning. My lungs were getting the sensation of being filled with cotton again. My throat feels huge. My knees were creaking. Everything that was putting me up in the hospital on a large scale had returned on a small scale, just 10mg down. And I was to taper down and off these meds?
I’ll die. I will die. I could feel it.
The issue with autoimmune diseases is that they attack your system. Turn off the immune system with steroids and I feel like the hulk! Take some of that away and let the immune system peek back in, and BOOM! It’s attacking me again. It’s scary, it’s painful, and it’s not what anyone wants. But looking term steroid use on a high scale is DANGEROUS!
So today we sat down and discussed my options.
My digestive system doesn’t work: We need to continue to treat gastroperisis, all my food allergies, and the suspected crohns. We’re trying to get me into a new GI. So we continued multiple meds for this alone. I have 5 pills I take multiple times a day just to manage from my mouth to my tailbone.
My immune system is in fill attack mode, and it’s obviously on my respiratory system right now. Last we checked my rheumatiod factor it was 15, which is right in the boarder of needing immunosuppressive therapy. Based on my symptoms, on the drug reactions, and my body acting up immediately after lowering the steroid, we decided it’s time for me to go back on drug therapy for my rheumatiod disease.
He wanted me to go on Methotrexate, or another stronger medication, but I chose one I know my body can handle; Plaquinel. We’ll keep me on 10mg of prednisone as a stabilizer, and add the plaquinel to control the immuno-attack response.
Now, this is scary stuff for me, because this is my first time being on both. I’m aware that it’s common for treatments for illnesses similar to mine, and I’ve watched this combination work great first hand. I’m still very nervous, because it takes time and my body adjusting to these changes.
Not only this, but this mixture will completely shut down my immune system, and I’m going to be susceptible to getting very ill from acute bugs. This means viral or bacterial infections are that much more dangerous, and this scary flu bug going around is terrifying!
I’m very scared what this means for my social life temporarily, but I have a good feeling overall. I think we’ve made a good decision in the long term treatment of my life.
When I went into my Drs office today, I didn’t plan on leaving “double dipping in the immunosuppressive therapy drugs”, but I feel as though this approach is much better for my body and long term treatment plans.
I need to reach back out to the local Rheumatologist and let them know I have taken a turn for the worse, and need this type of treatment. Knowing that I’m actively needing treatment might push them to take me as a patient, even though they’re “full on the amount of Medicaid patients they can take right now.”
I simply don’t want to die. I don’t want to greet death this young. I don’t want to leave my babies behind AS BABIES. The medical community has a hard time taking care of the chronically ill, and we have to work extra hard to be taken seriously. Because the type of medications we’re trusted with at home, we have every chance to abuse the system.
It’s painful to me that so many abuse a system put together to save our lives, and double dip in other ways, such as going to two different doctors for the same treatments and same medications. This puts a damper on patients ability to get treated, because as long as I’m seen as “taken care of” I am swept under the rug by so many specialists. When in reality, I’m barely holding on, my Dr is just trying to keep me alive, and the specialists should be taking me in.
Today was emotional in that I had to make a very serious decision on my health, and my life. It’s hard and I wish I didn’t have to make these decisions. I’m so incredibly lucky to have a great Dr that listens, takes me seriously, and knows I’m not a DRUG abuser. Knows that when I come in saying that these steroids brought me back from the dead, I’m not seeking to get high. I’m seeking to find a way to keep me alive.
I’m human just like everyone else. If that means I have to take double the immunosuppressive therapy to get up and do my damn laundry… then so be it. It’s worth it.