Last Saturday, I started tapering down off steroids by 10 mg. By Sunday night, I was in a ton of pain again. I didn't really sleep, and I was starting to get upset because of how much pain I was in. I chose to see this as a positive thing. Since coming home from the hospital, my pain had been under fantastic control - to the extent that I had barely been taking pain pills for "breakthrough pain." I had been given two strengths of breakthrough pain pills, and I hadn't even filled the script for the stronger med. I had an old bottle of it with a few pills left, so I figured I could use that if I grew desperate. Sunday night was my desperate night, and I took the pills! Monday morning, I decided that I did need to fill that script after all!
On Monday, I went to see Jack Black (Pain Dr) for a follow up. He was very sad to hear about my insane epic-length hospital stay, but happy that my pain has finally been under control with the new med. He had discussed going on this med with me a few months ago, but at the time, I wasn't ready to take the plunge. This med has really been a life-saver for me, and I'm very thankful that I went on it!
Jack Black gave me some trigger point injections to help with the pain in the neck/shoulder area. Unfortunately, I don't think that they really made much of a difference, but at least we tried. He also gave me a script for a pain relief gel to put there. It has turned out to be somewhat helpful for the pain, but it does not absorb, so it sticks to clothes and leaves a residue everywhere it touches.
I had to catch him up to date on a 5.5 week hospital stay, and I was added on to his schedule, so after quite a long wait, it was a long visit, then after he left, I thought of one more question. After waiting about 20 minutes to get an answer, I decided that they could call me - I had been there for 3.5 hours.
Tuesday morning, I had a 10:00 appointment with the new Rheumatologist. It lasted until 1:30. The Nurse Practitioner came to get me from the waiting room herself right at 10:00 on the nose. She took my history, went over my medical records with me, and examined my joints for an hour and a half! Then she had me read what she had typed up to make sure it was accurate. Very thorough.
Then the doctor came in, accompanied by a med student, who awkwardly stood in the room and didn't say anything. ;) The doctor's opening comment was: "Wow, on paper, you sound like you should be dead! You look really amazing in person for what's going on with your body!" I am not quite sure how to respond to that. You've heard of invisible illnesses? Well, I have one, and guess what? I am really quite tired of being told that I don't look sick... even by my doctors when I was in the hospital! Ugh. Sometimes I wish I looked and acted as sick as my body actually is. I think that might help with the doctors not really believing me when I say something's wrong or that I don't feel well. But then again, at least I still have my looks! ;) Just kidding. I look like an inflated chipmunk right now, thanks to the steroids. My face and body are so swollen (nearly 20 lbs up! And 34 pounds up from my lightest weight back last April!). So I was flattered that she thought I look good.
Aside from that comment, I really liked the doctor. They are organized - they printed me a list of my meds, and highlighted the ones that they were changing the dosages on, and put a little arrow to indicate if this was an increase or a decrease in the medication. She also printed me a list of what she wants me to do. I like lists. My old rheumatologist did lists, too, but not to this extent.
She discussed several treatments that she would consider putting me on. Some of them were a little scary to me, and I told her that. She said, "We could change up your medications, but what I'd really like to do is maximize the therapies you're already on first. I'd also like to give your body about 2 months to see where it's going to settle out after all the trauma you've been through at the hospital for the past several weeks." I thought that this was a very good approach.
It is time to taper off the steroids. She planned a very slow taper - dropping 2.5 mg every week - which will take over 12 weeks (later, after she called my Endo Doc, they changed this to dropping every 5 days). She is almost doubling the dosage on my immunosuppressant shots, and we are going up by 50% on one of the nerve pain meds. I need to take a vitamin every day and stretch all my joints every single day. She said that with arthritis, you either use it or lose it, so it's important to stay limber.
She told me that the shots can take up to two months to show any effect. Also, she said it's normal to experience increased pain for about a week every time I drop on the steroids... and I'll be dropping every 5 days. So, I asked her what I do in the meantime as I taper off steroids and wait for the shots to kick in. She said that I have pain meds for a reason... this is the time to use them if needed until we get the inflammation under better control. I truly, truly hope that the shots will help so much that I'll be able to get off pain meds!
She wanted to get a bunch of labs, so on Thursday, I went to my PCP. This appointment was only 2.5 hours. ;) She was very sweet, as always. I had a lot of questions and concerns, so it was very helpful to pick her brain and get her perspective on how and where things are going. Both she and my pain doctor indicated that these abdominal infections may continue to occur intermittently throughout my life, in addition to having to deal with my arthritis and adrenal issues and POTS on a chronic basis. Sort of depressing, but I was glad that they were honest with me.
Okay, I think that this was about long enough, haha, so I'll just wrap up by saying how glad I am to be home again!! The meds are now on a very reasonable schedule, which is great. Most nights I am sleeping, although there have been a few nights of difficulty sleeping due to pain. Overall, I am feeling better and stronger each day! Thank you for your prayers and encouragement!