Quote:
Originally Posted by Southern Bell
Hi Jeff,
I take baclofen (20 mg X 3) for spasms, valium (10 mg X 3) for the stiffness, prednisone (15mg one day/5 mg next day) to keep my eyes from locking in place and having double vision, and imuran (50 mg X 3) to help control the prednisone effects. We are in the process of trying to reduce the prednisone to a maintenance level of 10 mg every other day. I know that I probably won't be able to completely be free from it but we are going to try slowly reducing the dosage. I know that some of my former post have not been clear on the dosages I take but I checked to make sure these figures are correct.
This combination has really seemed to work well although I still get stiff with too much outside stimuli and being cold. My X-neuro made the comment that he has seen patients take up to 80 mg of valium per day to control the stiffness which I can't imagine. I think he was just talking "Big" which is one of the reasons he's no longer my doctor. I really am reluntant to increase the valium because I can tell that it has had an effect on my thinking and remembering process. But I am thankful that it has helped with the stiffness and the other problems that I have experienced with SPS.
I hope this helps. As I've said the SPS really is my biggest problem and having the spasms and stiffness under control is so important.
Good luck,
Becky
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Thanks, it does help actually. She has me on the same dose of Valium (30mg/day) split into four doses instead of three. The prescription was written for up to 40mg/day, but when I started taking 10mg x 4 she asked if I'd back off to 7.5mg. Ideally, she wants me at 5mg x 4, but the spasms are too much at that level. In addition, she has me on 20mg of Baclofen 4x/day and I'm still at 35mg of Prednisone, though she wants to start trying to cut this in two months once I've stabilized from the surgery.
What I'm finding, though, is that it actually isn't the Valium doing the most good. I had been doubling up my Neurontin at night so that I could take less during the day. Once she added all the muscle relaxants, the combination put me into such a deep sleep that I was having a hard time waking up, so I started lowering the nighttime Neurontin and taking the same dose spread out during the day. Even thought it was the same dose and waking up got easier, the spasms and tightness started getting worse. I'm now working my way back up to the larger nighttime dose and things are getting back to where they were. Apparently the relaxant properties of the Neurontin in one large dose are providing the benefits, and the other meds are just maintaining it throughout the day.
My pain doc (who originally put me on the Neurontin for nerve pain) said it was okay to take as prescribed or all at once at night if it made me too tired during the day. At this point I think the neurologist takes over this med, so I may ask her if she minds if I try going even higher on the nighttime dose and maybe I could lower the other meds and spare them for when I get older.
I need to try and rearrange my schedule, though. I'm a bit of a night owl and I can't get up for work now. I'm going to try going to bed early and getting up early in order to give myself some more transition time from sleep with all the meds.
Its interesting you mention the double vision, mine never went away--even with 60mg of Prednisone. I wonder if this was because it was SPS related rather than MG. Its actually gotten worse now due to the muscle relaxants; I'm attributing that to the MG.
Everyone in my family has been concerned about my personality change since starting the Valium, but I've been thinking its a good thing since people at work are actually talking to me now (actually I'm talking to them). Apparently, their concern is that I'm continually one conversation behind, or in left field having my own conversation. It would have been nice if they had actually explained this concern a little better. I'm going to have to either work on focusing more, or, if I can take more Neurontin, maybe I can get down to 5mg of Valium and keep the good parts of my new personality and lose the bad parts. At least I know what I need to focus on now.
Thanks for your help.
Jeff