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neuro symptons and lupus

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Old 02-16-2006, 02:45 PM   #1
Join Date: Mar 2005
Location: london
Posts: 469
zorm HB User
neuro symptons and lupus

Dear all,

I know i have been diagnosed with sle and sticky blood now and started treatment. i still feel i have a lot of unanswered questions. i always feel i learnt more about lupus and its diseases from this board. Also what questions to ask my rheumie.

I have been given an injection of steriod which should last three weeks. On top of this i have been given mepacrine. Its an antimalarial an alternative to plaquenil as i could not tolerate it. Im on a small dose three halves of tablet evry week. I have been on treatment only just over a week. i was doing really well when i took the steriod injection i felt a bit like myself again for the next few days and i have not been lying in bed in and out of fits and pain which is what i had ended up like until i started the treatment.

I got a bit freaked out tonight however cause my neuro type symptons seemed to come back quite strong. I get afluid feeling around my head and then i just feel a sense of unrealness and then get a reaaly bad mood swing and feel i can't keep still. Its pretty frightening but i was more in these fits than out of them before i started treatment.Its really wierd like you aware of what you are doing but you just don't feel right. i notice aswell when these things happen all my physical symptons get worse. for example when i get inflammtion of my muscles etc they are all up at this time. also i get swelling in my cheeks they are sucked in like skeletor one minute and puffed out like a hamster the next. anyone know what causes this. i can honestly say these fit type things are the worse part of the illness for me cause you have no contol over them and its scary. i geuss as well with people with lupus there is no way of really prooving neuro symptons its unlikely they would show up on a scan of any kind. however My rheumie said the excess protein they found in my spinal tap was indicative of lupus i geuss and it affecting the brain.

I self medicated on an extra half of my anti malarial tonight cause i felt i had to do something. i feel i may need stronger meds or something. One of the rheumies i saw suggested imuran anti inflammatory too.

Geuss i was feeling a bit scared again and needed to check in with you huys i know im not going to feel better over night. also i getting itchy type rashes that bleed into the skin too around various parts of my body very small however.

love zoe x

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Old 02-17-2006, 09:54 AM   #2
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Join Date: May 2004
Posts: 267
darkwater HB User
Re: neuro symptons and lupus

What injectable steroid were you given? I have only taken oral prednisone, but others who have taken the stronger steroids have told me stories of severe mood swings and unusual behavior that comes over them suddenly and they can't control it. It's like they become somebody else and they see themselves acting out, but can't stop it from happening until the "fit" passes. One friend called them "demon" drugs, but he had leukemia and was probably getting really high doses. Well, at least your bouts of pain are better, that is worth a lot, but the side-effects and weird behavior must freak you out. Yes, do give it some time for things to even out. I have read that even with the high-dose steroids, the body will adjust to them somewhat and the side-effects will become less wild and noticeable than they are at the beginning of treatment.

As for your course of treatment, many articles I have read favor an initial treatment with anti-malarials and steroids to get the current flare under control and get a person out of crisis mode. In the short-term (meaning a few months at most), steroids are truly amazing at providing relief and stopping one's condition from getting progressively worse. Then, once a person has gotten some relief and gotten somewhat stabilized, they will want to switch from the steroids to other immunosuppresives like the Imuran they mentioned to you. I am not familiar with the path taken with CNS lupus (though I think I have some neurological symptoms myself), but maybe others on the board are.

Best of luck with your treatment and with keeping your marbles together.

Old 02-17-2006, 04:33 PM   #3
Join Date: Feb 2006
Location: Oregon
Posts: 2
Shamrock17 HB User
Re: neuro symptons and lupus

I am also new to this site & am having neuro problems along with my Lupus(SLE;going on 3 yrs since dx'd) have had many tests..MRI..Brain angiogram & phy. therapy....have been hospitalized with severe vertigo in Oct '05....still walk like I am drubk..however he room no longer spins....any ideas or suggestions?

Old 03-04-2006, 02:24 PM   #4
Join Date: Mar 2006
Location: Surfside Bch, TX USA
Posts: 3
tammyd HB User
Re: neuro symptons and lupus

Originally Posted by Shamrock17
I am also new to this site & am having neuro problems along with my Lupus(SLE;going on 3 yrs since dx'd) have had many tests..MRI..Brain angiogram & phy. therapy....have been hospitalized with severe vertigo in Oct '05....still walk like I am drubk..however he room no longer spins....any ideas or suggestions?
You do not say the outcome of MRI or the other tests. Doubtful that it is the same thing but I too suffer from vertigo. Some attacks are mild and some knock me off my feet and make me violently ill. I have had some hit me that lasted for days and some only minuets or hours. They have even hit while I was asleep. My rheumatolgist could find nothing and sent me to an ear, nose and throat doc. Mine turned out to be excess fluid in the inner ear canal. I was on Diazide to try to reduce the amount of fluid. My balance is still not the greatest and some still call me a clutz but they do not happen as often or as violently as they used to.

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