Tuesday I took it easy, packing up my apartment. Pain in the legs still but the new pain killers help.
I did not sleep but 4 hours Tuesday night. Very alert and focused. Not sure if it is the Lyrica or pain killers.
Wednesday I had my MRI. Pain was not bad yesterday and only took 1 pain killer in the morning and one at night, so that was good! My MRI results should be to my doctor tomorrow.
Again, I did not sleep well at all last night. I fell asleep around midnight after trying for two hours only to wake up at 4AM wide awake and focused again. I used this time to study for the GRE in the upstairs living room so as not to wake up Tim.
I am very hyper and non-stop moving. I have no idea which medicine is doing this, but it is kind of awesome!
I am a little sore in my thighs today. It feels like I worked out. Maybe just from packing up more yesterday? I also feel sore in my neck and back, but nothing like that leg pain earlier this week.
Will update on what the MRI says tomorrow!
Thursday, June 26, 2014
Monday, June 23, 2014
Day 5
I woke up at midnight, 1:30, and 4:00 AM this morning in pain again. I did not take another of the pain killers until 4AM, but it was still before the 8 hours.
I called my rheumy and made an appointment. I was really struggling to walk when I got to my appointment. My heart rate was 111, super high due to the pain I was in. She took a look at my joints and when she squeezed them, they did not hurt more than before. They just hurt the same; consistent and non-stop. She said this is not typical and not specifically due to inflammation. If it were inflammation, touching them would hurt and the high doses of prednisone would have controlled it.
She thinks that because when I shift my body into different positions and it helps to reduce pain and since the prednisone is not working that I may have nerve damage in my lumbar. She asked if I had an numbness or back pain, but I have not any more than my normal sore back.
She has ordered an MRI for me and I am going on Wednesday morning. However, the insurance company has not yet approved. She said they have been giving her a hard time about MRIs, but that an x-ray will not show her anything about what is going on with me.
She sent me away with hydrocodon-acetaminophen for the pain and Lyrica for nerve relaxation. The Lyrica she said should help me sleep through the entire night, which I know Tim will appreciate. So far today, I have not had awful pain since I got home around 2PM. It seems that the pain gets really bad throughout the night and lasts all morning. Hopefully the new pain killer will help with the pain in the morning.
I called my rheumy and made an appointment. I was really struggling to walk when I got to my appointment. My heart rate was 111, super high due to the pain I was in. She took a look at my joints and when she squeezed them, they did not hurt more than before. They just hurt the same; consistent and non-stop. She said this is not typical and not specifically due to inflammation. If it were inflammation, touching them would hurt and the high doses of prednisone would have controlled it.
She thinks that because when I shift my body into different positions and it helps to reduce pain and since the prednisone is not working that I may have nerve damage in my lumbar. She asked if I had an numbness or back pain, but I have not any more than my normal sore back.
She has ordered an MRI for me and I am going on Wednesday morning. However, the insurance company has not yet approved. She said they have been giving her a hard time about MRIs, but that an x-ray will not show her anything about what is going on with me.
She sent me away with hydrocodon-acetaminophen for the pain and Lyrica for nerve relaxation. The Lyrica she said should help me sleep through the entire night, which I know Tim will appreciate. So far today, I have not had awful pain since I got home around 2PM. It seems that the pain gets really bad throughout the night and lasts all morning. Hopefully the new pain killer will help with the pain in the morning.
Sunday, June 22, 2014
Day 4
Yesterday I was very foggy by the early afternoon and my cognitive processing speed was ridiculously slow. I increased my steroids to 30 mg.
My ankles were a little sore and by midnight I was hobbling a bit. We had decided to go to a friends for a couple hours for game night. I had two or three drinks. I am not sure if this affected me or not. I also had pork for dinner with spinach, but then had a couple of hot wings at our friend's. Not sure if the hot sauce can cause inflammation.
At about 4AM this morning, I awoke with extreme pain my knees and ankles to the point that I was crying and whimpering. I put my head pad on it immediately and after about three minutes of the pain worsening, I took a pain killer that was leftover from a previous prescription. After about 10 minutes, the pain began to subside and I fell back asleep.
At 6:30, I awoke again with the same pain, but had no more pain killers. I took four Advil and 20 mg of steroids with the plan to take 20 mg in the evening for a total of 40mg for the day. Tim drew me a hot bath so that my joints could get relief by floating a bit. It took about 20 minutes or so and everything calmed down a bit. I called my rheumatologist's office and the doctor on call told me to take 60mg and that he would call me in a pain killer.
The relief from the Advil lasted only about 30 minutes. By 8AM, I was in screaming pain again, even in the tub. I called back my doctor and he said he recommended that I go to an Urgent Care.
By 9AM, we were at the Urgent Care. Throughout that time, it was the most pain I have ever been in my life. When I first had lupus before I was diagnosed and treated, it would hurt to walk and put weight on my knees and ankles or if they were touched. In this case, nothing was even touching them and it felt like that pain times 10.
After we checked in and got me settled to see the doctor, the pain subsided a bit. After an hour, the pain was nearly gone. This was before I even got any pain killers to kill the pain. I think the steroids kicked in at this point.
The doctor had them give me MORE steroids in the form of the shot. Boy am I going to be cranky today. Poor Timothy. He also prescribed me Tramadol to take when the pain comes back. I have not taken any yet because I am feeling pretty good.
I felt silly after my pain went away due to the steroids, but I honestly felt like something more was wrong than just joint pain because of the severity of the debilitating pain. I thought maybe it was something more serious like a blood clot, so I am very very glad that we went to the Urgent Care anyway. It was too much pain to have to just sit there and wait for the pharmacy to open at 10AM for the pain killers, especially if something more could have been wrong.
I plan to talk to my rheumy tomorrow to explain what happened and discuss my future Benlysta infusions. The doctor on call said that that kind of pain is not typical, but that some joint pain is. We will have to see what my rheumy says.
My ankles were a little sore and by midnight I was hobbling a bit. We had decided to go to a friends for a couple hours for game night. I had two or three drinks. I am not sure if this affected me or not. I also had pork for dinner with spinach, but then had a couple of hot wings at our friend's. Not sure if the hot sauce can cause inflammation.
At about 4AM this morning, I awoke with extreme pain my knees and ankles to the point that I was crying and whimpering. I put my head pad on it immediately and after about three minutes of the pain worsening, I took a pain killer that was leftover from a previous prescription. After about 10 minutes, the pain began to subside and I fell back asleep.
At 6:30, I awoke again with the same pain, but had no more pain killers. I took four Advil and 20 mg of steroids with the plan to take 20 mg in the evening for a total of 40mg for the day. Tim drew me a hot bath so that my joints could get relief by floating a bit. It took about 20 minutes or so and everything calmed down a bit. I called my rheumatologist's office and the doctor on call told me to take 60mg and that he would call me in a pain killer.
The relief from the Advil lasted only about 30 minutes. By 8AM, I was in screaming pain again, even in the tub. I called back my doctor and he said he recommended that I go to an Urgent Care.
By 9AM, we were at the Urgent Care. Throughout that time, it was the most pain I have ever been in my life. When I first had lupus before I was diagnosed and treated, it would hurt to walk and put weight on my knees and ankles or if they were touched. In this case, nothing was even touching them and it felt like that pain times 10.
After we checked in and got me settled to see the doctor, the pain subsided a bit. After an hour, the pain was nearly gone. This was before I even got any pain killers to kill the pain. I think the steroids kicked in at this point.
The doctor had them give me MORE steroids in the form of the shot. Boy am I going to be cranky today. Poor Timothy. He also prescribed me Tramadol to take when the pain comes back. I have not taken any yet because I am feeling pretty good.
I felt silly after my pain went away due to the steroids, but I honestly felt like something more was wrong than just joint pain because of the severity of the debilitating pain. I thought maybe it was something more serious like a blood clot, so I am very very glad that we went to the Urgent Care anyway. It was too much pain to have to just sit there and wait for the pharmacy to open at 10AM for the pain killers, especially if something more could have been wrong.
I plan to talk to my rheumy tomorrow to explain what happened and discuss my future Benlysta infusions. The doctor on call said that that kind of pain is not typical, but that some joint pain is. We will have to see what my rheumy says.
Saturday, June 21, 2014
Day 2
I woke up feeling pretty energized. Throughout the night I had to wake up to use the restroom 2-3 times.
As the day went on, in the late morning I began to feel very stiff. My chest felt very locked up and not much was helping it. I went to the chiropractor and he adjusted me and I snap, crackled, and popped more than I have in years. He told me to go home and take a warm bath and place a heating pad on my chest to help with the cartilage in my chest.
I saw cross-legged on the couch doing some coursework for an hour or so. During this time, when I went to adjust myself, my hips were in immense pain.
I went home and soaked in the bathtub, which helped a bit. I have been sitting for a few hours with the heating pad on my chest. I am feeling very unfocused and my school work is getting harder to do as they day progresses.
I feel very achy in my joints and still stiff in my chest.
I also am SO ravenous. I have been very hungry ever since the infusion, eating a ton of food and nothing is satisfying my hunger.
As the day went on, in the late morning I began to feel very stiff. My chest felt very locked up and not much was helping it. I went to the chiropractor and he adjusted me and I snap, crackled, and popped more than I have in years. He told me to go home and take a warm bath and place a heating pad on my chest to help with the cartilage in my chest.
I saw cross-legged on the couch doing some coursework for an hour or so. During this time, when I went to adjust myself, my hips were in immense pain.
I went home and soaked in the bathtub, which helped a bit. I have been sitting for a few hours with the heating pad on my chest. I am feeling very unfocused and my school work is getting harder to do as they day progresses.
I feel very achy in my joints and still stiff in my chest.
I also am SO ravenous. I have been very hungry ever since the infusion, eating a ton of food and nothing is satisfying my hunger.
Thursday, June 19, 2014
Day 1.5 - Post Infusion
It has been about four hours since my infusion ended. I zonked out during the infusion, likely due to the Benadryl injected into my before my infusion to prevent any reactions. It took about 2 hours for my infusion instead of one. She wanted to make sure to go slow with the drip the first time, because apparently that helps!
I came home and tried to do some macroeconomics coursework, but drifted off while listening to the lecture on my computer. I feel fine so far, just a bit weak and sleepy. No other side effects to report yet.
I came home and tried to do some macroeconomics coursework, but drifted off while listening to the lecture on my computer. I feel fine so far, just a bit weak and sleepy. No other side effects to report yet.
Day 1 - Start of Benlysta
Today I start my first Benlysta infusion.
I have been feeling off and on the past two weeks since summer started. Naturally I knew that my lupus would get worse after a week or two off of teaching, as the flares are always delayed.
I also stopped taking Cell Cept in May (after having taken it since September) because it was causing excruciating migraines that lasted 1 to 2 weeks at a time. At that time I restarted Plaquenil (they had taken me off it in March after I had been taken it since January 2013 because I was experiencing extreme nausea after adding the Cell Cept).
That being said, I have been feeling okay and taking 20 mg of prednisone a day, 10 in the morning, 10 at night. My joints have been sore and I was taking a mile walk a day with my dog in the mornings to try to keep moving. By night time, typically my body ached and it was difficult to fall asleep. A few nights I kept waking up in sweat after breaking night fevers and would have trouble falling back asleep.
Four days ago I was feeling a ton better, still on 20 mg of prednisone, but not as much pain. Then yesterday I took Tim's nephew and cousin to the children's museum for 3 hours. I felt fine energy wise, but when I went home to begin packing up my apartment for my upcoming move, I was exhausted and walking was painful for my ankles and going from sitting on the floor to standing was killer for my wrists.
Prior to my infusion, I feel very stiff this morning and overall just kind of crappy.
I want to update this daily so that I can best understand if Benlysta is working for me and also so that I can note anything that triggers flares (or makes them better).
I have been feeling off and on the past two weeks since summer started. Naturally I knew that my lupus would get worse after a week or two off of teaching, as the flares are always delayed.
I also stopped taking Cell Cept in May (after having taken it since September) because it was causing excruciating migraines that lasted 1 to 2 weeks at a time. At that time I restarted Plaquenil (they had taken me off it in March after I had been taken it since January 2013 because I was experiencing extreme nausea after adding the Cell Cept).
That being said, I have been feeling okay and taking 20 mg of prednisone a day, 10 in the morning, 10 at night. My joints have been sore and I was taking a mile walk a day with my dog in the mornings to try to keep moving. By night time, typically my body ached and it was difficult to fall asleep. A few nights I kept waking up in sweat after breaking night fevers and would have trouble falling back asleep.
Four days ago I was feeling a ton better, still on 20 mg of prednisone, but not as much pain. Then yesterday I took Tim's nephew and cousin to the children's museum for 3 hours. I felt fine energy wise, but when I went home to begin packing up my apartment for my upcoming move, I was exhausted and walking was painful for my ankles and going from sitting on the floor to standing was killer for my wrists.
Prior to my infusion, I feel very stiff this morning and overall just kind of crappy.
I want to update this daily so that I can best understand if Benlysta is working for me and also so that I can note anything that triggers flares (or makes them better).
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