New Member with a wife that has lupus

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tjwong
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/11/2009 8:36 PM (GMT -7)   

My wife and I went into the ER yesterday afternoon, we spent 6 hours there. We went in because last March she had an episode with aseptic meningitis, it scared the piss out of me. I had no idea what that meant all I knew was that it was bad and that the bacteral form could easily kill you. She had skull crushing head aches, and vomited every 10 minutes, she couldn't keep any thing down. We spend 5 nights in the hospital on that trip.

Roll forward to yesterday, we went into the ER on the doctors advice because the symptoms and the pattern was frightenly similar to last years mengingitis attack. Once we got there, the did the usual blood work up, uring samples etc. The started an IV, gave her morphine to control the headache, which of course worked for awhile. It basically lasted about 2 hours. the blood work came back negative for excessive white cell counts so they figured no white cells no infections. We explained to them about the experience with the meningitis from last year. After a couple more hours, the swabbed her nose for a culture for swine flu, and told us that we would see the results in a couple days, for any kind of flu infection.

After the doctor reviewed the old medical history from the last stay, he basically concluded it was the lupus causing the problems, prescribed 40mg dose of predesone, because it worked last  year, gave her a script for some anti vomit drugs, some pain killer and sent us home and told us she needed to go to her regular doctor the following day. Duhh, I could have said the same thing without sitting there for 6 hours. It is just so darn frustrating and I hate seeing my wife laid up in bed like it is now. I am worried about what is going to happen because she is scared I am scared, we have a 8 month old infant to take care of on top of everything else going on, thank god he is at least healthy.

Its been since Friday that this has started, it has escalated slowly which is why we went in yesterday to see if there is something they can do to stop it. Which nothing was done, so now a day later, it has escalated slightly more, and now she is vomiting, not like before but she is nauseated, this started last night and she actually puked twice today, however its nothing like before. But the head ache is getting worse, she is taking oxycodone to control the pain along with time release morphine. She only takes 2.5mg of the OC and only the time release morphine before she trys to sleep. And on top of that the doctor has her on 40mg of predesone. We are scheduled to go to the rhumatologist tomorrow at 330pm, I have no idea what he is going to tell us and I have doubts that he has much he can do about this. I feel so darn helpless seeing my wife like this, my son is too young to understand. Has any one else had anything like meningitis as part of the Lupus symptoms>


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 8/12/2009 6:25 AM (GMT -7)   
tj, no I haven't heard of meningitis as part of the lupus symptoms, but that's not to say it can't be. I just don't know.

What your wife needs is a good specialist. If it is indeed autoimmune, her rheumy will hopefully help her. If not, he should refer you to a different specialist.

It sounds like you're going through a real tough time, and I wish you the best. I hope you have help with your son.

Please let us know what the rheumy says.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/12/2009 9:44 AM (GMT -7)   
Hi and welcome I am so sorry that you wife is suffering so bad right now I have had brain inflamation with lupus but never been told it was menengitis If she does indeed have lupus the rhumatologist should be able to help her a great deal I too hope you have help with your baby I can only imagine how hard it is for you guys you will be in my prayers and please let us know what the rhumey says good luck......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/13/2009 4:01 PM (GMT -7)   
My goodness that is awful.  I think waiting for her appointment tomorrow is all you can do right now.  With her being so ill, I don't doubt that the rheumy will be very pro-active in getting her treatment.  Please keep us posted okay?
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


tjwong
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/14/2009 9:41 PM (GMT -7)   
My wife is feeling a little better. We went to see the Rheumy the other day. Basically he said what the ER doctor told us, that it was probably a flare. So he raised her predesone from 40mg/day to 80mg/day. After the first day which was yesterday she felt alot better, she even looked like her old self again. Then today I come home to find her in bed again with the headache and nausea again. The headache wasn't as bad but it was there as well as the nausea. Today they also prescribed ambian to help her sleep, it seems that the darn predesone is causing her to have a hard time falling asleep plus it seems to give her nightmares or some really weird dreams.

Nona43 you mentioned that you had brain inflamation, did that cause you to have bad headaches? Last year she had these skull crushing head aches and uncontrollable vomiting, I rushed to ER and we ended up for a 5 day stint in the hospital, they gave her a spinal tap to extract some spinal fluid and she was so out of it that she don't remember that at all. They found proteins in the spinal fluid indicating some kind of infection, they didn't know what so they flooded her with anti-biotics for 4 days. The cultures came out all negative for the most common bacteria and virus that they thought they should find in her spinal fluid. So the called it an aseptic meningitis. That is what they are suspecting this time, the last time they also gave her predesone to reduce the swelling which really helped, it took her 10 days to get over it to a point that she could regain enough strength to function again.
 
I hope this ends real soon, my little boy really misses mommy :(

nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/14/2009 11:03 PM (GMT -7)   
Hi Tj, yes I did have bad headaches also got a spinal tap found elevated protiens but no infection I was also treated with alot of steroids it took a little while but it finally came under control I still take alot of steroids and also a med called cytoxan and this seems to keep those really horrible complications at bay I really hope your wife gets better soon I know that baby really misses his mama I will pray for you guys! ......nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


tjwong
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/15/2009 7:39 AM (GMT -7)   
Another question, did they give you predinsone? If so did you have trouble sleeping? My wife is on 80mg per day and she is having problems sleeping, even after being prescribed ambien she still can't sleep well. She says that she her brain is like very active, and has very vivid dreams making it real hard to get a decent nights sleep.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/15/2009 8:43 AM (GMT -7)   
80mg of pred is a lot and sleep will be difficult for her unfortunately.  Vivid dreams and a "racing brain" is very common on those high pred doses.  Hot baths, warm milk and bananas before bed might help her.  Those are all comfort things that might be beneficial. Hopefully the high dose is short lived and she can taper it down soon and get back to a better sleep.
 
Keep us posted,
 
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums


tjwong
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/15/2009 10:50 AM (GMT -7)   
Ginny thanks for the reply. She backed off the Prednisone on her own to 60mg. She has a script for ambien but it isn't helping much. Someone on the Lupus.org forum mentioned a herb called valerian have you heard of that?
 
 

nona43
Regular Member


Date Joined Jul 2009
Total Posts : 42
   Posted 8/15/2009 4:57 PM (GMT -7)   
Hi Tj, to tell you the truth ambien gave me crazy dreams but as ginny said pred can do the same thing hopefully going back to 60 mgs will help her out in the sleep department it makes you feel worse on top of everything else when you cant sleep well I surely wish you guys the best of luck!....nona
dx Lupus,whith  brain, kidney ,heart invovment
Rhumitoid Arthritis ,seizures ,autoimmune hepatitis.
Meds-planquanil, lamictal ,lopressor ,imdur ,nitro, vtaminD ,metformin,
synthroid, lortab, phenergan, xanax ,prednisone ,kenelog injections
cytoxan, remicade
 
  Never Give Up!
                          nona


StillMovin
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 8/18/2009 8:06 PM (GMT -7)   
When I was first dignosed with lupus I suffered from severe migrains, all the test in the world came back normal. i was told there called Lupus Migraines, nothing worked for me until they put me on inderal, a beta-blocker. One of the things it helps control are migrains along with a dozen other things. taking that everyday has helped much. I still get them but no where near as much or as strong. When I do get one I take an ambiem, puts me right to sleep an wake up feeling better. Ambiem can give you nightmares. Along with the high does of preg. With me , when I get a flare it seems to end with a juciy migraine, I know Im at the end of my pain when that happens, almost like it starts at my toes, goes threw the rest of my body an ends up at the head, if that makes sence. Ask about the inderal to help control them. Good luck. my daughter was 2 when i started all this. I know the feeling. The right meds at the right time hopefully will help. Good luck. A nice cold compress on the back of the neck helps to.
SLE Lupus, dignosed 13 years. I take Celebrex everyday, Inderal for the migrains, Plaquenil on and off ( I know thats BAD), Somo for muscle pain. Ativan for the wonderful anxiety, and ambiem as needed. And a Margharitta here an there.....

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