Recent Near Escape: Lupus Nephritis attacks again! Seeking advice on emergency Steroid Tapering, etc

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townsend
Regular Member


Date Joined Mar 2004
Total Posts : 97
   Posted 2/3/2008 9:54 PM (GMT -7)   
Hello All; I had a pretty bad scare this past week. Vomiting and nausea, diarrea. These were some of my symptoms at the beginning of my major Kidney-nephritis episode in September.

Another thing you should know: I have had my period 3 times in the last 6 weeks. I took a procrit shot (for Anemia - I started taking it once a week in September, for the Anemia that was brought on by the September Lupus Nephritis Fiasco -- then every other week once the anemia came under control) over a week ago (Saturday the 5th), and wonder if I should wait the the full two weeks as prescribed for the second shot that I still have in my fridge. I'll ask the doctors, but maybe someone out there has some experience as well?

I did page my Rheumatologist on Friday, who recommended that I come into the emergency room if the other symptoms presented themselves: constant vomiting (dry-heaving) and severe intestinal pain. I never did develop these symptoms. The vomiting was only once a day, in the evening, on Thursday and Friday. I never did completely lose my appetite - I was able to eat breakfast only, then a little bit of food during the day. I had enough energy to do a good job teaching those days, then would go home, throw up, eat a little something else, and go to bed. Although looking back, I can notice that I was excessively tired the whole week before - going to bed as early as 8 or 9, and still waking up tired.

Saturday, still not feeling quite right, I decided that I wanted to avoid the emergency room, and another hospital stay. I called the doctor on call in the GP office, who said someone could call me Monday morning to set up an appointment for me to come in. I told him what my plan was:

I increased my prednisone to 60 the last two days, rested, and drank plenty of fluids (which may put back my plans to get the kidney biospy on the 15th - I don't think they want my kidneys too taxed for the biopsy, or in general - it's so hard to know what's the right move!).

I decided to wait to see if I would feel better. I did, and do, although I still have lingering diarrea. It is getting better. My appetite is better, vomiting is gone, and energy is improving. I know it's largely because of the steroids, and would like some advice on how/when to start to taper back down - I was at 30/20 mg (alternating) per day prior to this.

I have an idea of what's gone wrong this past week, but would like to find out for sure. I'll be going to my doctors' offices tomorrow (they're all connected in one building), and hope someone will be ready for me, at least with a script for blood work. I'm expecting someone to call me in the morning to tell me where to go, and I don't hear from them, I'll start calling, or just go in.

To sum up, here are the three things I could use help/advice with - I'll send an email asking my team of doctors as well, but maybe some of you all might have some insights to share???:
1. Prednisone: How much, for how long after a mini-flare like this?
2. Procrit shot: should I be taking this once a week, or stay at every other week?
3. Blood tests to take tomorrow - can we find out what happened through tests tomorrow? Any knowledge to share here?

Many thanks for any advice you all can give me.
Townsend

Diagnosed with Sjogrens in 1993, Raynauds and Vasculitis in 2001, and Lupus in 2004. Recent serious flare-up of Lupus Nephritis. Current Medications: Prednisone 20-30 mg alternating, with Plaquenil 400mg, plus now a couple of meds for high blood pressure (from the Lupus Nephritis) and one for the heartburn they give me.
A medication for anti-anxiety, a sleeping pill, and percoset are all taken as well, as needed.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/4/2008 8:33 AM (GMT -7)   
Hi Townsend,
 
Oh my.  That sounds awful. I'm sorry you're dealing with this.  Did your rheumy recommend the prednisone increase?  This might not be a mini flare, like you mentioned.  It could be a lot more serious than that.  Especially with the symptoms you had and are having right now.  I wouldn't go down on the prednisone until you see someone.  It won't hurt you to stay on that dose until you get some direction on what to do.  You are starting to feel better too, so that would mean the pred dose is a good one.  Just stay on it for now.  That's what I would do.
 
The procrit, I have no experience with. Sorry!
 
The blood tests will take a couple of days, unless they were ordered "stat".  What tests were ordered?
 
Let us know when you hear from your doctor okay. 
 
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 2/4/2008 3:51 PM (GMT -7)   
I dunno what advice to give except see your rheumy ASAP!
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 2/4/2008 6:15 PM (GMT -7)   
I agree with Ginny that this could be more than a little flare - it sounds like it could be serious and I am really hoping you got into see your doc today. I think your doc would be the best one to answer your questions. Please let us know what you found out from your doctor - it sounds like you have a lot going on.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 2/4/2008 8:31 PM (GMT -7)   
Hi Townsend:

I agree with Ginny and Hippi, it sounds like you need to see a doctor and the sooner the better. I hope everything turns out well. Just wanted to add my well wishes to you too.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 2/5/2008 4:27 PM (GMT -7)   
hi townsend,
i am very sorry that you are going through this, i agree with everyone on the prednisone, and i was taking procrit from '99 to '04, and i wouldnt change the shot because you dont know what your blood levels are, but the tiredness is something i remember very well, i would get 8 hrs of sleep at night and go to school (high school) and could hardly keep my eyes opened in my classes. but that would definately be something you should ask your doc. as for your bloodwork, do you usually find out the results the same day? some clinics do have their patients get their blood drawn an hour before their appt and the doc will have the results by the time you go in to see him/her. good luck
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 2/8/2008 9:43 AM (GMT -7)   

Hi! Everyone,

Just an fyi to share about prednisone, thank God for the miracle cure for me:

I used to take Prednisone every three months or so for flares, with a months course, 40mg x1 week, then 30,then 20, then 10mg, then every other day and off.  However, I have CNS lupus and was falling and sick too much, and since last Feb. have been taking 5 mg everyday, and it helps so much. In July, the dr. said your lupus is stable. I have a dexa scan for bone density every year and told the dr, risk vs benefit, walking is good, and because my b/p is not good, I would rather have osteoporosis than a stroke yeah


God knows, even if I don't....
CNS Lupus 2005, APS
Meds: Plaquenil, Neurontin, Thyroid, Voltaren, Aspirin, Atenolol and Norvasc, Prednisone prn.

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