Tuesday, July 27, 2004
Making friends with prednisone...
Well, she confirmed that the MRIs are completely normal. This at least means we know I don't have any lesions or tumors. She did say that my neurological symptoms could be Sjogren's syndrome causing inflammation further along the spinal cord or may be too subtle to show up on a scan.
We discussed migraine prevention since the latest symptoms (trouble with speech, cognition, weakness) are worse in the presence of migraines. Ufortunately, over the past six years, I've used EVERY med commonly prescribed for that purpose. Every med either did nothing or the side effects were prohibitive (like vomiting).
So we discussed all that I'm currently doing for inflammation. I'm taking Vioxx, Plaquenil and high dose pharmaceutical grade fish oil....a pretty powerful combo. There's really only one med stronger that she feels would be feasible, and that's prednisone.
I've had two other courses of prednisone in the past year....one was a short course of high dose when my edema got bad. The other was a long course of low dose for disabling fatigue associated with the Sjogren's. Both times did help with the neuropathy, so it would be reasonable to expect these latest symptoms would respond in kind.
So I'm doing a two week high dose course in the hope that the neurological symptoms will go away and stay away. At the very least, it will give me enough energy to return to work next week. I just found out that if I don't return on Monday I could lose my workstation and my shift (but not my job).
Fair warning.....I get reallllllly happy on prednisone. So if I suddenly make 600 blog entries in the next five days, that's why. I do look forward to returning to work and being able to honestly say I feel better.
I am developing quite a bit of respect for just how strong an illness Sjogren's can be (although I'm sure the fibromyalgia contributes too). I never thought I'd require steroids three times in a year. Even the lady at the pharmacy who filled the prescription looked at the dosage and said, "Wow, you must be really sick."
I can also see that this is likely to be an ongoing pattern over the coming years, short course prednisone when Sjogren's renders me unable to function. I know the side effects are horrible, but I either take it or remain at home disabled. I hope that research on rheumatic disease will generate a safer med someday that is as effective.
Pain level: 7
Fatigue level: 8
We discussed migraine prevention since the latest symptoms (trouble with speech, cognition, weakness) are worse in the presence of migraines. Ufortunately, over the past six years, I've used EVERY med commonly prescribed for that purpose. Every med either did nothing or the side effects were prohibitive (like vomiting).
So we discussed all that I'm currently doing for inflammation. I'm taking Vioxx, Plaquenil and high dose pharmaceutical grade fish oil....a pretty powerful combo. There's really only one med stronger that she feels would be feasible, and that's prednisone.
I've had two other courses of prednisone in the past year....one was a short course of high dose when my edema got bad. The other was a long course of low dose for disabling fatigue associated with the Sjogren's. Both times did help with the neuropathy, so it would be reasonable to expect these latest symptoms would respond in kind.
So I'm doing a two week high dose course in the hope that the neurological symptoms will go away and stay away. At the very least, it will give me enough energy to return to work next week. I just found out that if I don't return on Monday I could lose my workstation and my shift (but not my job).
Fair warning.....I get reallllllly happy on prednisone. So if I suddenly make 600 blog entries in the next five days, that's why. I do look forward to returning to work and being able to honestly say I feel better.
I am developing quite a bit of respect for just how strong an illness Sjogren's can be (although I'm sure the fibromyalgia contributes too). I never thought I'd require steroids three times in a year. Even the lady at the pharmacy who filled the prescription looked at the dosage and said, "Wow, you must be really sick."
I can also see that this is likely to be an ongoing pattern over the coming years, short course prednisone when Sjogren's renders me unable to function. I know the side effects are horrible, but I either take it or remain at home disabled. I hope that research on rheumatic disease will generate a safer med someday that is as effective.
Pain level: 7
Fatigue level: 8
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