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Discussion Starter · #1 ·
i would like to ask if any one else has had cerebritis.i had it.and was in hospital for 6 days.i have been put on prednisolone and quetiapine fumarate.
i also had a mri scan that show a lot of white spots on the brain.at the time i was very scarery.i would like to hear from any one who has had it.and if they had the cerebritis come back.and how they have dealt with it.thanks
 

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I'm new here too. I'm here for the same reason. I can't seem to get out of a 1 1/2 yr flare. I'm from Tampa, FL and have travelled all the way to Mayo Clinic in Rochester, MN to see the world's best neuroimmunoligists to differientiate and make sure I'm not a freak of nature that has both Lupus and MS. I'd like to know the same thing as you. We must have both registered at the same time. (I CAN'T BELIEVE I JUST FOUND THIS SITE. I BELONG TO ANOTHER MESSAGE GROUP-BUT AM BAD AND DON'T CONTRIBUTE A LOT!)
I'm on my 11th month of cytoxan. I had to relearn how to read, write, etc...after my first hospitalization. Everyone still looks familiar to me though. But am doing much better...sometimes I still walk like a drunk, but I would never need a cane now. however, I still feel rotten with horrible neuropathy, can't pick up my 5 year old, am unable to drive. I'm 34 years old.
They just bumped back up my steroids but only to 10mg---Thank you God, but it is a double edge sword. It seems to be the only thing that works for me. My anti-ds-dna levels were just checked again and there at 1,160 (my lab is positive at anything over 99). To say the least--Mayo called me that same week (freaked out again by my high levels--I knew I was in a flare (I TOLD YOU SO:rotfl:) and they scheduled my appt for Febuary after my last chemo treatment here in Tampa. I don't know what they could possibly want to do now?
My brain feels and looks the same way on MRI as you described. My spinal fluid was worse on my last visit there. I had more proteins, swelling, and O-bands.
Sorry to say it sounds like we have a lot in common.
Nice to meet you. I hope we hear from others and they forgive our foggy spelling, grammar, etc...
Caren
 

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Welcome to the forum tabsboy ! :)
It sounds as if you are having a very tough time.

Many of us have some degree of central nervous system lupus of one sort or another, which for an unfortunate few can take the form of psychiatric illnesses. Many of us have brain lesions too.
I am not the best informed here about CNS lupus, now known as NP or neuro psychiatric lupus. There are a few possible causes for similar symptoms which need careful and usually complicated investigating so as to treat suitably. There are a number of treatment options these days rather depending on what's determined to be the cause of the symptoms.

Do you have a lupus expert rheumatologist taking care of you? You might also see a neurologist at some point and evaluation by a neuro psychiatrist can be very useful.
I hope the drugs are helping you for now. No doubt you'll be having further consultations and testing and your situation will become clearer soon I hope. I hope they will soon decide on a treatment plan for you.

Let us know how we can help you further but you will find the forum very quiet over the holiday season. I know that some of the very well informed people are away . Take heart and live in hope

Bye for now
Clare
 

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Welcome to the forum caren!

I'm sorry you are not feeling better after the cytoxan. Maybe it isn't a good idea to be trying to reduce the Prednisone at this stage until you have started a steroid sparing medicine such as Imuran/ azathioprine or cellcept (MMF)

I see from your profile that you have also been diagnosed with APS so I am wondering what treatment you are on for this. I expect you know that APS can cause symptoms that resemble those of MS and transverse myelitis. One lupus specialist reckons that as many as one third of those with an MS diagnosis are in fact suffering from APS.

As for the ds DNA antibodies, well I have recently heard that some doctors aren't so sure that levels do reflect disease activity although that is the usual view.
There's an in depth discussion of the various studies, test methods, and which types of ds -DNA ( IgM /IgG ), and correlation with complement levels at

http://books.google.co.uk/books?id=...&hl=en&sa=X&oi=book_result&resnum=3&ct=result

I think that what matters is how you are feeling regardless of antibody levels.

You might get more responses to that specific question if you post on another section, maybe Tests or Symptoms. As I said to tabsboy, the forum is very quiet over the holidays.

It's very hard having to travel so far and at such expense for treatment. I suppose you have investigated if there aren't experts in FL or at least people competent and willing to do whatever tests the Mayo requires. Of course if a patient doesn't visit them Mayo don't get paid. :( so I guess they are keen to be visited.

I'm sorry it's all so complicated and difficult for you.

Bye for now

Clare
 

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Hello again caren :)
I forgot to mention that we don't care about spelling and grammar here.
If we did most of us wouldn't be able to post ! I check my posts as I go along and again before posting but I often don't see the mistakes until the post is on the board and frequently have to edit several times.

Just now I have corrected 5 typos & slips of the finger or brain or both.

:)
Clare
 

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Discussion Starter · #6 ·
hi msluped
thank for your reply.but when i did have my freak out.you think you are the only one.that has got it.and i found it hard to tell anyone about it.hope every think goes ok for you at the mayo clinic.i have a appointment at the lupus clinic on the 18th dec.will post the results for every ones opinion
best of luck
tabsboy
 

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Discussion Starter · #7 ·
hi clare t
thanks for your reply.i am been treated by the lupus clinic at st thomas.so i am in good hands.my doctor is dr d d,cruz.i will be back at the clinic on the 18th dec.because the the doctor was thinking about putting me on immune surpreesion.will post results on her soon has i can.i have only posted one question on here so far.and finding that i have got so good replys.and i am not the only one with cerebritis
best of luck
tabsboy
 

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Hello again tabsboy :)

You certainly couldn't be in better hands ! Several of us here are patients of Dr D Cruz, me included. A variety of immunosuppressants are used to treat lupus.
I'll look forward to hearing what Dr D Cruz suggests for you.

Bye for now and I hope you are feeling much better before long.

:)

Clare
 

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I had a very big bout of cerebritis a few years ago. In St. Thomas' a fortnight.
It is a scary and disorientating thing. I was well looked after and mine has never returned to the same extent. I had mine at pretty much this time of year and even now my mind goes back to it. Take things very calmly,no stress.
x Lola
 

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Discussion Starter · #10 ·
hi lolalola
thanks for the reply.glad that your cerebritis has not return.did it take you a long time to get over it?and were you on steriods?i am on prednisolone.and they have started to cut it down.to see what happens.by the time i cut it down to the lowest dose.iit will be march 2009.they said it had to be done this way because of the mri scan results wich show lots of little white dots on the brain.
thanks
petertas
 

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I wanted to say Hello and welcome you to the board.

I have never dealt with this and know nothing about it but I hope they get it under control for you.

Keep your chin up and enjoy the holiday.
 

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Discussion Starter · #12 ·
hi karolh
thanks for your kind words.since i left hospital and was put on prednisolone[steroids] and
quetipine fumarate.things are a lot better.and i am having regular check ups at the lupus clinic[st thomas],so i am in good hands.hope you and every body on this site has a great christmas and new year.
thanks
petertabs
 

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Dear Peter, Yes I was on a hefty dose of steroids. The only snag I had was when I tapered down below 15 mgms the symptoms started returning but an extended spell on 15 mgms did the trick. It actually took me two years of hard work to taper the steroids, despite steroid sparing medication.

The other thing I found was that a lot of the memories of that period really faded and got confused over time. Also it was quite a long time, probably about 6 months before I could discuss it really rationally with the Docs. Before that I often thought I was making sense when I was talking nonsense!

You probably feel everything in your life is in sharp focus at the moment. I found it quite a strain because I started developing compulsions that I had to do things perfectly,cook wonderful meals, be a wonderful parent etc. I felt like I had to make each day count when I was recovering. Don't know if this makes any sense to you but I am telling you just in case it helps.
x Lola
 

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Discussion Starter · #16 ·
hi lolalola
i found your last reply very helpful.i am on 20mg of prednisolone[steroids]and in 2 weeks i will have to start to reduce the dose.to 17.and keep reduce it every 2 weeks.and i was just wondering.what the effects could be.i will be posting what happens when i do start the reduce my steroids.and what happens to me.once again thanks for your help.because it is always good to hear from some one who has been thou it.
kind regards
tabsboy
 

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Dear Peter, I found my brain getting a bit manic, my co ordination was not good and I felt as if I had a urinary infection. You may be different. What is important to remember is that the effects of the taper were nothing like as frightening as the original illness.
Hope this helps.
x Lola
 

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Discussion Starter · #18 ·
hi martine
thanks for sending me the link.it was very intresting.have a great christmas and new year
tabsboy
 

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Discussion Starter · #19 ·
hi lolalola
glad to hear that the effects.were not has bad has the original illness.because thats what i was worried about.because i have to start to reduce my steroid intake.from 20mg
then 17.5then 15mg and so on.and when i had cerebritis.i had very very hallucations.
and would not like that to happen again.because it was very frightening.for for all your information.it had been very helpful.happy christmas and new year
tabsboy
 
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