I’m just getting into week two of being totally off Prednisone and it is sucking pretty hard. Joint pain in my knees, hips and fingers most of the time occasionally joined by feet and ankle pain. Fatigue is really high making it an effort to stay on task and not just sleep all day. Looking at the web, there are stories of this lasting 1-2 months after getting off of Prednisone. The really bad thing is that immuran has a rare side effect of joint pain so I don’t really know for sure if it’s the Prednisone withdrawel or the immuran that is causing the joint pain.
Results of my last CT-Scan are back and the Superior Mesenteric Artery no longer shows inflammation. So now it’s all about not having a relapse. I will be tapering off of Prednosone starting with this week at 15mg and then dropping 2.5mg each week until I am off completely.
To completely clear my system and prevent relapse, Dr Pachaidee is putting me on Imuran. She wants me to start at 25mg for a week, then go to 25mg in the morning / 25 mg in the evening, ending up at 50mg in the morning and 50mg in the evening and stay on that dosage for a year. Which seems like a really fricking long time.
Imuran is an immunisuppresant that is primarily used in kidney transplants and for treatment of Rheumatory Arthritis. It is getting a lot of off label use in the treatment of inflammatory disorders such as Chron’s disease, Lupus and Vasculitis. I’ll be getting a complete blood count test and liver function test about two weeks into the imuran to make sure that I’m not one of the 1% that have a serious problem with the drug. If that test turns out okay, I’ll get tested on some less frequent schedule.
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All the hoopla from the CT-Scan about a possible dissection and “OMG we need an agiogram now” has basically blown away to nothing. Dr Pachaidee talked to Dr Rosemblooom, the vascular surgeon, and he saw no point in seeing me. It comes back to the lack of any pain or other symptoms. As long as that is the case, my possibly unusual dual origin superior mesenteric artery is just a curiosity. Nether the radiologist that was to perform the angiogram nor Dr Rosenbloom think there is a dissection since there are no symptoms.
Had a follow up with Dr Pachaidee today, starting the ramping down of the Prednisone. It’s going to be a slow process, I am was taking 20mg in the morning and 20mg at night. Today I go to 20mg in the morning and 10mg at night for three weeks and then do 20mg in the morning and nothing at night.
Another CT-Scan and follow up in 2 months. Also Dr Pachaidee is going to talk to Dr Rosemblooom, the vascular surgeon, and have him look at the last CT-Scan to evaluate whether or not it would be worth my time to see him. Both Dr Pachaidee and Dr St George (the radiologist that didn’t do the angiogram) aren’t sure there is anything to look at in the absence of any systems and even if there was something to look at, what are they going to do? So, we’ll see what Dr Rosembloom thinks.
I talked with the radiologist who was going to perform the angiogram and he said that he saw no pressing need for the procedure after reviewing the CT-Scan report in light of the fact that I have no abdominal pain or other symptoms. He said he would request the actual CT-Scan pictures and take a look at them to make sure, but for now the additional poking of holes in my femoral artery is not happening.
I had my second contrasted CT-Scan Monday afternoon. A few hours after the scan, the radiology dept called me and told me they where faxing the results to Dr Pachaidee and I should call her office. So I called, they said they hadn’t gotten the faxes yet but would look for them and it might be Tuesday before I got a call back since they where closing soon. I put it out of my mind since Karen and I were meeting with Elegant Imagery for some pre-wedding photos Monday night. (more…)
Last couple of days I have been waking up about every 2-3 hours instead of sleeping through the night. It’s getting me to work on time each morning but starting to wear me down. Dr Pachaidee said that should would have dropped my prednisone dosage to 20mg twice a day (instead of the 30mg twice a day) but didn’t becuase of the upcoming wedding and associated stress. I’m not really feeling any stress about the wedding, at this point it’s out of my hands and I just don’t tend to stress over things that I have no control over. I am going to drop down to the 20mg twice a day dosage now instead of waiting until after the honeymoon.
Met with Dr Pachaidee for my post hospital follow up. She wants to do another CT-Scan to take a look at how the artery is responding to the steroids. Since I’ve been doing so well, she said she would normally start dropping the dosage but with the wedding coming up and stress levels along with it, she wants to keep me at the same dosage until after the honeymoon at which point I will start lowering the dosage. She was not happy with me about the sunburn. The prednisone is going to make healing from it slow going. Lots of lotion and and lesson learned again I suppose. I’ll meet with her again middle of next month to go over the CT-Scan results.
Prednisone is a corticosteroid (not an anabolic steroid so no massive pumping up for the wedding). Steroids are used by the body to regulate metabolism, inflammation, immune function, and salt and water balance. I’m taking 60mg a day of prednisone, 30 in the morning and 30 at night to suppress the inflammation of my mesenteric artery.
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A funny thing happened a few days before my 43rd birthday. Tuesday, March 25th I started having abdominal issues. Felt like bad gas or maybe constipation. I pretty much just ignored it, figured whatever it was it would work itself out. Wednesday I had a normal bowel movement which was odd since I still had the gas/constipation feeling. I continued to ignore it. Bowels moved normally Wed so that was starting to bug me a little bit. How could I have gas or be constipated if everything was actually moving along just fine? Thursday night Karen and I worked out (Biceps and Back I think) and that night the pain got really bad. It was in my stomach and in my lower back. (more…)
