I would say that my pain level is down from before I started IVIg therapy. I don't need Oxycodone in the morning. I haven't been needing my full daily prescription most days.
I have been back in the gym working out 2 hours a day, 3-4 days a week. In additional to weight lifting, this includes treadmill walking in my aerobic zone for 45 minutes or so. This is another indication that things have improved. I look forward to getting back on my bike, cycling again, as soon as the weather warms.
Tuesday, April 05, 2011
Friday, March 18, 2011
the day after
This morning my pain level was 6-7 which was hopeful but is 7-8 now at 7:00 pm. I just took 10 mg of Oxycodone to try and bring it down. The most painful area still radiates from my left heel and shoots up the back of my leg, though I have pain on the tops of both feet as well. Sometimes I get this pain when my feet are swollen but they aren't right now. I hope not to need more Oxycodone tonight.
I had a small headache this morning, but I didn't treat it except to continue drinking a lot. It went away by later in the morning and it's still gone now. I didn't take any more Predisone after the 60 mg total last night.
I had a small headache this morning, but I didn't treat it except to continue drinking a lot. It went away by later in the morning and it's still gone now. I didn't take any more Predisone after the 60 mg total last night.
Thursday, March 17, 2011
IVIg second dose
It's 11:00 pm the night after my second IVIg dose, taken on consecutive days. I talked to Dr. Shapiro about my pain level being so high (8-9) the morning after my first dose and he said that it was not unusual. I was hoping for immediate relief but that may not be how it plays out.
A headache started before I left the infusion center today, which could not be reduced with Ibuprofen. I took 20 mg of Prednisone, and 2 hours later another 20. After an additional 2 hours, the headache hadn't had any significant improvement, so I took a third 20 mg dose. Then the pain finally started to dissipate.
I left the center with pain levels 8-9 in my left heel and the top of my right foot. I waited until night before taking any Oxycodone to see whether I would need it or not, hoping the pain would decrease from the treatment. I took 10 mg followed by an additional 10 mg 90 minutes later to bring the pain down to where I could walk without wincing.
A headache started before I left the infusion center today, which could not be reduced with Ibuprofen. I took 20 mg of Prednisone, and 2 hours later another 20. After an additional 2 hours, the headache hadn't had any significant improvement, so I took a third 20 mg dose. Then the pain finally started to dissipate.
I left the center with pain levels 8-9 in my left heel and the top of my right foot. I waited until night before taking any Oxycodone to see whether I would need it or not, hoping the pain would decrease from the treatment. I took 10 mg followed by an additional 10 mg 90 minutes later to bring the pain down to where I could walk without wincing.
IVIg notes
I forgot to mention in yesterday's post about my current pain level. It was 6-8 the day prior to starting IVIg therapy without any narcotics. Last night, after my first treatment, it was 6-7. This morning it is 7-8 and I am walking with a cane. I haven't noticed any dramatic effect from the treatment.
I have not experienced any side effects from yesterday's treatment.
I have not experienced any side effects from yesterday's treatment.
Wednesday, March 16, 2011
it's been a while
A quick update:
I went off Morphine again in September and seized Sept 11. After going back on the day after, I worked with Dr. Schakkel to taper much more slowly. I am off Morphine now and got my driver's license back last weekend.
I was on Coumadin until about 4 weeks ago when I noticed a lot of blood in my urine. A CT scan showed a clot in my left kidney, which I passed later. That was excruciatingly painful. My urologist Dr. Hackett scoped my bladder and left kidney. He said my kidney looked almost completely bruised inside, just like my ankles. He said that if I go back on anticoagulants, I have a high risk of bleeding and clotting again.
As I blog now, I am sitting in an infusion center getting my first 70 g IVIg treatment. I receive another tomorrow and then another in 4 weeks. We will re-evaluate at that point. I expect it to take 6 hours or so to get that high a dose in. Headaches are the most common side effect, mostly due to dehydrating effects of the IgG antibody.
I went off Morphine again in September and seized Sept 11. After going back on the day after, I worked with Dr. Schakkel to taper much more slowly. I am off Morphine now and got my driver's license back last weekend.
I was on Coumadin until about 4 weeks ago when I noticed a lot of blood in my urine. A CT scan showed a clot in my left kidney, which I passed later. That was excruciatingly painful. My urologist Dr. Hackett scoped my bladder and left kidney. He said my kidney looked almost completely bruised inside, just like my ankles. He said that if I go back on anticoagulants, I have a high risk of bleeding and clotting again.
As I blog now, I am sitting in an infusion center getting my first 70 g IVIg treatment. I receive another tomorrow and then another in 4 weeks. We will re-evaluate at that point. I expect it to take 6 hours or so to get that high a dose in. Headaches are the most common side effect, mostly due to dehydrating effects of the IgG antibody.
Thursday, July 29, 2010
Coumadin, Morphine, and June 30 seizure
Dr. Leitch and I are still working to arrive at a Coumadin dose that will keep my INR in the 2.5 to 3.0 range. Today my dose increased from 3.5 mg to 4.5 mg, yesterday's INR was 1.5. I am wondering if my body is fighting to keep my INR down, that even as my dosage increases, it fights harder to stay down. I had INRs of 3.3 and 3.2 on consecutive days on 4.0 mg. Now on nearly the same dose, I am down at 1.5. We will continue working at raising my INR through increased Coumadin doses.
I stopped taking Morphine right after my last post on June 21st. I had another seizure on June 30th. My neurologist Dr. Fiol and I believe that the major contributing factor was the decrease in my use of Morphine or that I wasn't taking any at all that lead to my last seizure and the winter seizures as well. My pain manager Dr. Schakel put me back on Morphine, 30 mg three times daily, but we are tapering my current use down at a MUCH slower rate. Last fall it was a 15 mg taper twice weekly. Now it will be a 15 mg decrease every 2-3 weeks. I will still be taking Morphine, just at a lower dose, maybe 45 mg total daily.
During the week or so I was off Morphine, some of my major side effects ceased: I could urinate without stream interruption, my constipation went away, and I could ejaculate for the first time since August. I was like a new man! That was a huge boost to my self esteem and mood in general. My overall outlook on life improved dramatically.
Once I started taking it again, the side effects came right back. We are hopeful that the decreased dose will minimize the side effects so I can be that confident man again. I will be working closely with Dr. Schakel to get a workable plan not only for pain management, but also managing the side effects. I am no longer willing to live with these to the degree with which I have been.
I stopped taking Morphine right after my last post on June 21st. I had another seizure on June 30th. My neurologist Dr. Fiol and I believe that the major contributing factor was the decrease in my use of Morphine or that I wasn't taking any at all that lead to my last seizure and the winter seizures as well. My pain manager Dr. Schakel put me back on Morphine, 30 mg three times daily, but we are tapering my current use down at a MUCH slower rate. Last fall it was a 15 mg taper twice weekly. Now it will be a 15 mg decrease every 2-3 weeks. I will still be taking Morphine, just at a lower dose, maybe 45 mg total daily.
During the week or so I was off Morphine, some of my major side effects ceased: I could urinate without stream interruption, my constipation went away, and I could ejaculate for the first time since August. I was like a new man! That was a huge boost to my self esteem and mood in general. My overall outlook on life improved dramatically.
Once I started taking it again, the side effects came right back. We are hopeful that the decreased dose will minimize the side effects so I can be that confident man again. I will be working closely with Dr. Schakel to get a workable plan not only for pain management, but also managing the side effects. I am no longer willing to live with these to the degree with which I have been.
Monday, June 21, 2010
Coumadin
I started Coumadin (Warfarin) this morning. The plan is to replace Lovenox injections with Coumadin oral tabs. I get my blood checked Wednesday and Friday with a possible dose modification next Monday. 2 mg daily for now.
I have mostly tapered off Morphine. I have had nausea lately, which I recognize from November's taper. So I have stayed with my morning dose, enough to take care of the nausea.
I have mostly tapered off Morphine. I have had nausea lately, which I recognize from November's taper. So I have stayed with my morning dose, enough to take care of the nausea.
Wednesday, May 19, 2010
100th post!
Wow, 100 blog posts since I began back in early 2006. This has proven to be very useful for me and many others as well.
The pain in my feet continues, though it's better in the morning than it has been, but much worse at night, especially after use. The more use, the worse the pain. The right is worse than the left.
Continued lack of ulcers is very surprising. Perhaps an indication that something we are doing is working well. The Lovenox injections maybe?
The pain in my feet continues, though it's better in the morning than it has been, but much worse at night, especially after use. The more use, the worse the pain. The right is worse than the left.
Continued lack of ulcers is very surprising. Perhaps an indication that something we are doing is working well. The Lovenox injections maybe?
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