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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/19/2007 8:48 PM (GMT -7)   
I haven't posted in a while.  I had to change my user name, because I forgot my old one and have a new email.  Anyway,  I used to post under Judy.  I have had major problems recently with NP-SLE.  I was wondering if anyone else had experienced this type involvement.  It has truly been a devastating experience.  It started out with brain fog and became more and more aggressive.  I started having difficulty articulating my thoughts, stuttering, visual disturbances, numbness in face/arms,  short term memory loss,  severe headaches, involuntary movements in arms, head, severe depression,  my thoughts became very unorganized and I became very irrational.  I was already taking cellcept, imuran and plaquenil when this started.  I was put on 60mg of prednisone which made an amazing difference (although I hate the stuff).  I have just had reoccurrences every time I try to wean off the steroids and it seems to be more aggressive every time.  I have never experienced anything like this.  I am a nurse.  I consider myself to be very grounded,  emotionally stable person.  I cannot describe the impact this has had on my life and self esteem.  Has anyone experienced NP-SLE?  Is the scariest thing that has happened to me thus far!
                                                                                                                  Judy

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/20/2007 8:51 AM (GMT -7)   
Judy,

I haven't experienced NP-SLE but I can just imagine how scary it must be. I do have brain fog and although that's not scary because I've gotten used to being not as sharp mentally as I used to be, it's stable. But all the symptoms you're having sound like it must be hard to function. I'm glad to hear that the 60mg of prednisone make you feel better, but I know how hard it is to take that much prednisone and what the awful side effects are. What does your rheumy tell you? I don't remember hearing of anyone who takes cellcept and imuran plus the prednisone and plaquenil, so your doctor really knows how sick you are. Sometimes the 60mg of prednisone will not only help you feel better, but it can also stop a major flare, which it sounds like you're having.

I also understand your feelings about the impact all this has on your life and self esteem. Just writing in this forum I realize how much I've declined mentally because often when I go back and read what I'm getting ready to post I can't believe how disjointed I sound. And sometimes I realize after the fact that I really didn't absorb the post I was responding to. The other day I ran into a woman who had been a client when I was in the financial industry and she didn't recognize me. When I introduced myself I could see in her eyes the shock and disbelief that I was the same person she had known. For a few seconds she was at a loss for words.

I know how bad it makes me feel, but what you're going through is so much worse. I do hope the increase level of prednisone helps and that you can find a solution so that you won't flare worse when you start to taper. Remember that your loved ones know who you really are and they will realize that any changes they see are caused by your disease. It helps me to talk to a therapist so that I can stay somewhat grounded.

I'm glad you've come back to the forum and I hope you find some solace here.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/20/2007 4:02 PM (GMT -7)   

Thank you for your response.  I have been on plaquenil, imuran and cellcept for a year.  I had a major flare last summer which attacked my heart.  I had to have a pacemaker put in.  I also have end stage renal disease from the lupus.  I do hate the prednisone!  The side effects are horendous,  but it just is amazing how the cerebritis has responded to it.  It's funny that you used the word "disjointed".  I have used the same word to describe how my thought process (or lack there of) gets.  I also have a hard time reading and comprehending now and retaining what i've read.  I really appreciate your compassion.  It does help so much to have a place to come and have people understand.  God Bless,

                                                                                                         Judy


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/20/2007 5:50 PM (GMT -7)   
Judy,

You have really come to the right place. Since you have been here before, you must be aware that there are some pretty amazing folks here and they have become like family to me. If anyone needs compassion, it is you Judy, and I do hope you'll come here whenever you need to vent or just when you need an understanding ear. While my lupus is much milder than yours, by far, I do understand what it's like to be chronically ill and it helps me so much to come here and be among friends who know what I'm going through.

As far as hating prednisone, many of us are right there with you. It has changed so many things about me and although I've tapered down, I do better when I increase the dosage. It's a real tightrope that we walk.

Are you on a waiting list for a kidney transplant? I believe there are people here who have had transplants and hopefully they will share their experiences with you.

Hang in there and let us know how you're doing. We're here for you.

Love,

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept 1,000mg, neurontin 1,200 mg, prednisone 5mg, plaquenil 400mg, synthroid .15mg, triamterene 37.5mg, tramadol prn, lunesta 3 mg, actonel, tri-est (compounded estrogen) 7.5 mg, cymbalta 30mg, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/21/2007 7:25 AM (GMT -7)   
Judy, it's good to have you back, but I'm really sorry about all that you are going through. I don't have experience NP-SLE, but it sounds miserable. Like Pat said, I'm glad it responds well to prednisone, but prednisone is such a double edged sword. It can help us feel so much better but it does terrible things to our bodies.

It's interesting how you and Pat talk about feeling disjointed in your thoughts and I definitely experience that. I have found that when I e-mail people or write things on the forum that when I go back to read what I have written, sometimes whole words or missing or I typed a completely different word than I meant to. I've learned to proof everything I've written before sending it.

Hang in there Judy and I hope you'll keep posting and let us know how you are getting along. ((((Hugs))))
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/21/2007 1:07 PM (GMT -7)   
((((Hippi)))) thanx so much. I am not on a transplant list yet. My kidney function has to get pretty low before I get put on the list and right now, Thank the Lord, I am holding my own. I am weaning off the prednisone and so far it is going good, besides the usual steroid withdrawal. I am going to see the neurologist on Monday.
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