CNS Lupus treatment, tried Cytoxan

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jlb2
New Member


Date Joined Dec 2009
Total Posts : 7
   Posted 12/22/2009 3:40 PM (GMT -7)   
 i an new to this forum and have beeb diagnosed with CNS lupus since july '09.  They put me on cytoxan with mild side effects until my RBC,WBC, hematocrit and hemoglobin all went down the tube,  they took me off the cytoxan but now they are throwing other drugs up in the air like cellcept, immuran, and rituxan,  Anyone had any success with CNS lups 
 
 

Post Edited By Moderator (aimsgirl16) : 12/24/2009 1:08:31 PM (GMT-7)


aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 12/24/2009 1:09 PM (GMT -7)   
I edited your title so members who have dealt with CNS lupus might read...

redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 12/24/2009 1:28 PM (GMT -7)   
prednisone was my saving grace. Prednisone at the right dose can work against pretty much any lupus issue to the best of my knowlegde
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


jlb2
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Date Joined Dec 2009
Total Posts : 7
   Posted 12/25/2009 7:17 PM (GMT -7)   
 I have also been on prednisonse since july but it took me over a 1 1/2 yrs to get dx/d.  the first time i started with grand mal seizures in 1/08 and after multilplr mris they came up with a dx of encephalitis and put me on prednisone in6/08.   i did well up until 4/09 which was when i began to have differerent seizures.  Finally dx.d me with CNs lupus in july.  that is why i an scared to just remain on the prednisone alone b/c they are tapering.  thanks for letting me vent 

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 12/25/2009 9:52 PM (GMT -7)   
My rheumy thinks I have CNS lupus and has increased my prednisone dosage from 7mg to 10mg per day. I'm also on 100mg per day of Imuran, for the past 18 months. I have to say that my neuro symptoms have gotten a tiny bit better (but not better enough!). But I hate to complain because I don't want to go higher on the pred!! I hate that stuff..... :(
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 12/26/2009 10:09 AM (GMT -7)   
My neuro symptoms were much improved by an 18-month course of Cellcept, after 18-months of Imuran didn't seem to affect the problem at all. Might be something you could suggest to your doctors...I feel like I have my regular brain back!!! YAY!!!

Prednisone controls the symptoms; while Cellcept manages treat & change the way the lupus is acting -- so it can effect more permanent change that pred usually does. I was on pred before, during, and after treatment with Imuran and Cellcept -- Cellcept has been my miracle drug. Other respond well to Imuran or MTX - Lupus is so unpredictable that it is up to the drs choice & trial & error to find what works for each of us individually.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 12/26/2009 10:37:29 AM (GMT-7)


MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 12/26/2009 12:15 PM (GMT -7)   
I had a fairly severe case of cerebritis/brain vasculitis. The onset of symptoms was swift and severe. My doc immediately increased my dose of prednisone to 80mg and added imuran. It responded quickly and I was able to wean down. I stayed on the prednisone for a long time until it suppressed my bone marrow and I had to come off. I hope you get some resolution to these issues! God Bless You, Judy

redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 12/27/2009 10:40 PM (GMT -7)   
I did 3 months on cellcept but it was the combo of 200mg of Imuran and 20mg of prednisone that seemed to work wonders. I am still on 20mg prednisone and 150mg Imuran. I really didn't enjoy cellcept but others swear by it. Finding the right drug for you is what is important. I may have implied prednisone alone was my miracle but I didn't mean to I am having a flare and not expressing myself as well as I would like when I am tired. but the prednisone alone stopped the progression it was just adding Imuran at a higher dose that pushed the symptoms back and got my life back to normal. I would have done better faster if we had been willing to go with a higher dose of prednisone. my doctors and I know that but prednisone is a nasty drug to depend on completely because of what it does to our bones.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


jlb2
New Member


Date Joined Dec 2009
Total Posts : 7
   Posted 12/28/2009 11:20 AM (GMT -7)   
I am still on 20 mg prednisone,my seizure medications, and plaquenil until my RBC go up enough to put me back on one of these drugs (Imuran, cellcept or rituxan). thanks for the replys

healmymom
New Member


Date Joined Dec 2010
Total Posts : 2
   Posted 12/26/2010 4:39 PM (GMT -7)   
I was wondering if user member Lynwood could reply to this? (I saw that you said your brain symptoms resolved after 18 months of Cellcept) if anyone else has any thoughts, please chime in!
My mother has been suffering from sort of auto immune related dementia for the past year. What began as looking like depression and a disconnection from others slowly, then very rapidly, progressed into a severe dementia. She has been to Mayo and is continuing to work with one of their top neurologists who is a specialist in the autoimmune dementias. She was orginially diagnosed with FTD, then a rare form of Alzheimers, and when she went to Mayo clinic the doctor there felt sure it was auto immune. Beginning in September she has been through the following treatments:
- week of steroids - via an IV (did this twice....no change)
- IVIG - no change
- Plasma Exchange (every other day for a total of 5 days of treatment) - did this twice and no change
- Cellcept (was on it for about 2-3 weeks while also having 2nd round of plasma exchange...no changes seen)

Her condition continues to deteriorate. She now screams most of the day, is always unhappy, demands food non stop, needs constant supervision and assistance to perform daily tasks (eating, getting dressed, going to the bathroom), and is unable to hold any type of regular conversation. Every now and then she seems to calm down and normalize (only at night) and can engage in conversation, smiles, talks about plans for the next day, and seems like the mom I know. However, when she wakes up, this all goes away and she once again is in a horrible horrible state. Her caretakers can barely care for her anymore, yet nrusing homes don't want to take her b/c she is younger (64) than most and her condition is so odd. At times she seems like an alzheimer's patient but at other times she is much more difficult and every now and again she appears somewhat normal again.

Several years before the dementia symptoms started, my mom was diagnosed with skin lupus (Discoid lupus erythematosus ) and Hemochromotosis. The doctors do not think that these are in any way related to whatever is going on in her brain. i noticed Lynwood posted that s/he had Lupus and also mentioned brain symptoms. Does my mom sound anything like you? Does my mom ring a bell to anyone else reading this?

The drs have basically given up. they thought the steroids, plasma, IVIG, or cell cept would do something....but non of them did. She seemed to improve for 2 days the first time she received plasma, but it quickly faded (her friends described it as a miracle b/c it was like the woman we used to know came back to life) and we never saw this again when they repeated the plasma exchange and added the cellcept. The only thing left to try, according to neurologist and the rheumatologist (just recently joined the group of dr's trying to help my mom), is Cytoxan.

We were so optimistic after leaving mayo, but our hopes have been defeated after every treatment has failed. I am hoping to maybe find someone out there who has been through this or has had a loved one or patient go through this and might be able to ffer up some other ideas that the doctors have not come up with.

healmymom
New Member


Date Joined Dec 2010
Total Posts : 2
   Posted 12/26/2010 4:40 PM (GMT -7)   
Did you have brain symptons? (dementia, confusion, etc)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 12/26/2010 8:36 PM (GMT -7)   
Yes, I had 'brain symptoms' with Lupus that Cellcept helped - couldn't focus, no concentration, confusion, a host of other things (NO dementia).

Since they have already tried Cellcept my guess is it wouldn't help your mother any...but I think I took it more than 2-3 wks before I saw improvement. You might double-check the records of how long she took it and ask the doctors if they think it was a long enough trial.

But my only experience is with LUPUS treatment - and that is a new cross-treatment use of Cellcept.

Best wishes
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde
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