Question:
Hi everyone, The neurologist seems to think these are prednisone-induced hallucinations and that I shouldn’t worry about them unless they get worse or don’t improve as my dosage gets lowered. I only wish they weren’t causing me to become dizzy. That’s definitely the worst part. I hope everyone is doing well and has a good weekend. Mel
Response:
<<The neurologist seems to think these are prednisone-induced hallucinations and that I shouldn’t worry about them unless they get worse or don’t improve as my dosage gets lowered. I only wish they weren’t causing me to become dizzy. That’s definitely the worst part.>> Sorry to hear this. Has the Prednisone dose then been pretty high? I’ve heard of others on high doses having hallucinations. My daughter hasn’t had that, though it only takes about 40 mg./day to turn her into an emotional basket case. We’ve not had the courage to try anything higher than that after seeing what she’s gone through at 40 mg./day. Not everyone responds to it this way at this dose. I’ve known others who were taking 60 mg. or even, in one case, 80 mg./day and been okay. I think though that if my daughter were to try that, she’d probably be hallucinating too. Sandra
Response:
Thanks Sandra, I was on 60 mg from mid-December up until last week. I’m now on 40 mg. I was on 60 because of the solumedrol IV and the gamma globulin IV I had at the very end of December that caused me to have the worst migraines of my life. The high dose of pred was a mistake, I should have been coming down in dose since the first or second week in January. But due to my lack of knowledge about the effects of the high dosage, a six-week hiatus between appointments (during which I caught the flu), and an untimely vacation on her part, I was stuck with the dose for a long period of time. Hopefully it will come down a lot now that she’s aware of the problem. I am not happy about the dose I’m on. I was down to 7.5, but then I got sick again. I think that she took it down too quickly and didn’t wait long enough for the immnuosuppressants to kick in. Sorry for going off like that, I’m still a little bitter about the whole thing. Mel "SCroyle909" <scroyle…@aol.com> wrote in message
news:20010218011912.04534.00000565@ng-ce1.aol.com… – Hide quoted text — Show quoted text -> <<The neurologist seems to think these are prednisone-induced hallucinations > and that I shouldn’t worry about them unless they get worse or don’t improve > as my dosage gets lowered. I only wish they weren’t causing me to become > dizzy. That’s definitely the worst part.>> > Sorry to hear this. Has the Prednisone dose then been pretty high? I’ve heard > of others on high doses having hallucinations. My daughter hasn’t had that, > though it only takes about 40 mg./day to turn her into an emotional basket > case. We’ve not had the courage to try anything higher than that after seeing > what she’s gone through at 40 mg./day. Not everyone responds to it this way at > this dose. I’ve known others who were taking 60 mg. or even, in one case, 80 > mg./day and been okay. I think though that if my daughter were to try that, > she’d probably be hallucinating too. > Sandra
Response:
Tapering Prednisone is always tricky for those with lupus. It’s often not a straight forward taper and there has to be a lot of up and down adjustments. I do hope though that you’re eventually successful at getting the dose to a more comfortable level. I don’t envy you at all in what you’re going through. I know how difficult it is. Sandra
Response:
I know just how you feel Mel.I had almost the exact thing happen to me and I’m still suffering the stupidity of the GP who was treating me while my rhuemie was out of the country. I think if I had known more there would have been a law suit. That is why I try to learn all I can about my treatments now.Ask lots of questions and take an aggressive attitude in your health care.Doctors are not perfect and do make mistakes although most won’t admit it. Sorry I got on my soap box but it really gets under my skin. Hang in there Becky
Response:
<<That is why I try to learn all I can about my treatments now.Ask lots of questions and take an aggressive attitude in your health care.Doctors are not perfect and do make mistakes although most won’t admit it.>> I think you have a very good approach to your own health care. You do have to be informed as well as being an active participant. Also, doctors do indeed make mistakes, even the best of them. I think that most try very hard to avoid mistakes, but it’s not easy. Medicine is not a pure science. Very few situations offer clear cut solutions. Sandra
Response:
"SCroyle909" <scroyle…@aol.com> wrote in message
news:20010228234357.00856.00000418@ng-cj1.aol.com… > <<That is why I try to learn all I can > about my treatments now.Ask lots of questions and take an aggressive > attitude in your health care.Doctors are not perfect and do make mistakes > although most won’t admit it.>> > I think you have a very good approach to your own health care. You do have to > be informed as well as being an active participant. Also, doctors do indeed > make mistakes, even the best of them. I think that most try very hard to avoid > mistakes, but it’s not easy. Medicine is not a pure science. Very few > situations offer clear cut solutions.
It must be incredibly frustrating to a physician to try and alleviate Lupus. Every patient is different, what works for one may be harmful to another. Sometimes you’ve got to be a bit sorry for them . . . but some are totally worthless and should not be allowed to see patients! Judith In SoCal where it’s raining *again*
Response:
I’m sure it’s frustrating to the drs. but it is even more so for the patient. When you have something going on and you are scared and can’t get any answers from those that should at least give an idea as to what is happening.Being treated like you are crazy. I developed hives and was given steroids and benadryl they just got worse so the doctor just kept upping the steroids until I was on 125mg a day an still no relief!Hives went to the lungs,mad dash to ER and then heard him call his brother who is a dermatologist and say I don’t know what to do with her now.It seems to me he should have ask that question a whole lot sooner. I ended up in the hospital on selou-medrol in an IV the hives were gone the next day. They did biopsies but the cause was unknown. I’m sure you can figure out th problems I started to have after that. My rhuemie was shocked when saw me . That is why I say be very active in your health care. I could go on but won’t. Becky in Carson City
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