Confused and depressed

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Regular Member

Date Joined Aug 2007
Total Posts : 39
   Posted Today 10:55 AM (GMT -6)   
Hey everyone. New here, just found this place while looking for people with lupus stories to help me get through mine. I was diagnosed with SLE when I was 16, and now 5 years later it turns out I have lupus nephritis. I was in the hospital for a week and begged to be brought home (they let me because I can take all my meds orally). However, I don't feel any better, if anything I feel worse. I was wondering if it was the meds that has me feeling this way. I had in the hospital three 1gm pulse doses of prednisone, and now it's a 60mg per day taper. Nexium, lisinopril, zrytec, plaquenil, oscal, and cellcept are all in total. The fluid retention from nephritis is making me very uncomfortable as well. I'm swollen so much that it hurts to eat or laugh. I was just wondering how long it would take for me to get better again, for the cellcept to start kicking in. Anyone else been on cellcept? What are your experiences with it?

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted Today 11:12 AM (GMT -6)   
Hi melissa and welcome. First let me say how sorry I am about everything that you have been through and that you have had to deal with this starting at such a young age. I don't have experience with nephritis. I had some very very mild kidney involvement a while ago that thankfully resolved, so I don't know the answers to some of your questions.

We do have members here on Cellcept who have had some very positive results from it, but I don't know how long it took for it to kick in and start working. I also don't know if it takes longer for people with nephritis to see results.

How often are you seeing your docs? I would hope they would be able to tell you a little more about when you might start feeling some relief - I hope they are staying in close contact with you since you have a lot going on with your health.

Although I can't be a lot of help with your med questions, I can say that you have found a wonderful forum for support. We have a great group of people here who are so supportive of each other. It's so nice to be able to come here and know that you are among people who truly understand what it is like to live with the ups and downs of this disease everyday. So, feel free to ask any questions and we are also here for you if you are going through a rough time or if you need to vent about something.

Take care of yourself and I'm glad you joined us.
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



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Co-Moderator: Lupus and CFS Forums

Regular Member

Date Joined Aug 2007
Total Posts : 39
   Posted Today 11:32 AM (GMT -6)   
Thanks for the response. It is comforting to know that people deal with this all the time and I suppose thats one of the things I wanted to hear. I've been out of the hospital for a day now, and I see my doctors again in three days. I'm really impatient; I hate all this waiting.
Thanks again for the response, I'm glad I joined too.

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted Today 11:34 AM (GMT -6)   
Hi Melissa,

It sounds like you have been going through a real rough time and I'm so glad you have come here for help and support. Hippi said it all. We are a wonderful little family and help each other get through the rough times we all experience with this disease.

I don't have lupus nephritis but others here do and I'm sure you'll hear from them. 60mg of prednisone is a huge dose. What is your taper schedule? I was on 60mg for 2 months and it really helped stop the progress of my disease. I've now tapered down to 7.5mg a day. The side effects can be pretty rough, as I'm sure you know, and any time you want to rant and rave about that, feel free to. One of the side effects I had when I was on a high dose was water retention. I know what you mean about it hurting to smile. And I only wear pants because my ankles are so swollen that they resemble those of an elephant, or an old lady. :)

I'm also on CellCept. I've had to lower my dose from 2000mg a day to 500 mg a day because it was hurting my kidneys, but boy oh boy, did it help me feel better within a couple of weeks. I got more energy, had less pain, and my brain fog lifted. I haven't had any side effects at all from it other than the fact that my creatinine levels went up. I think that's just an unusual side effect. It's a fairly new drug and as you know, it's mostly prescribed for lupus nephritis. It sounds like you have a good rheumy.

I have a daughter who's about your age and it breaks my heart to see someone so young having to go through this. You can do it, though, and we're here to support you, to listen to you, and to offer whatever information we might have. You're now part of our family and I hope you'll check in often. There are people of all ages here, and I'm sure we have members who are your age as well.

Hopefully you'll soon feel the effects of the meds you're on and you'll start to feel better. Please let us know how you're doing.


Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Aug 2007
Total Posts : 39
   Posted Today 12:15 PM (GMT -6)   
Within the next two weeks my taper of prednisone will be down to 40mg a day. The doctors said they'll take it from there seeing as how I do.
I've read other good things about cellcept and I hope that it begins to work soon. The thing I don't get, I suppose, is that one of the symptoms was water retention, and now a side effect of the medicine is water retention? How do I know I'm getting better? I get thirsty easily, I drink water, I get bloated, my clothes won't fit and everyone tells me I have to leave the house. It's all very frustrating and I can't seem to concentrate to do anything that I like.

But I'll pull through and try to be patient. Thanks a lot for the response. They're making me feel better already.

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted Today 3:00 PM (GMT -6)   
Greetings Melissa! Welcome. I am so sorry you are dealing with such a terrible disease at such a young age. My daughter is almost your age and, like Patty said, you are much too young. Your rheumy sounds very focussed, however, and I hope you start feeling better very soon. You are young and I know it is hard to "get out" if you are uncomfortable about the water retention and with how your clothes fit. Maybe you could put on some nice, comfortable sweats and at least go to a movie with a friend? It helps to get your mind off things for awhile and this is why everyone is trying to encourage you to get out some. You have a whole new set of friends here, too, so you can come here often and complain, cheer successes, gripe, be happy, be sad, or whatever with us! Again, welcome! Audrey Ann
Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted Today 5:16 PM (GMT -6)   
Hi Melissa, welcome to the group. I just read your post and I am so sorry you are going through all of this. I'm 50 years old and I hate it. I can't even imagine what it is like for somone your age to have to deal with all the crap! Yes sadly that is a side effect of predisone. I have a love hate relationship with it. If I don't take it I can't move if I do take it I can get out of bed and swell up like a ballon and roll through the house. They just got to come up with somthing better. Or what would be better yet is to get rid of the flipping disease already!
anyway welcome to the group. Hang in there and keeping posting we love to hear how everyone is doing.
huge hugs
God Bless
Lupus, possible Crest, COPD, Cervical Cancer survivor. Osteoporosis
Prednisone 5mg, Plaquanil 800mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Apr 2005
Total Posts : 1529
   Posted 8/20/2007 12:04 AM (GMT -6)   
Hi Melissa,

No wonder you're confused and depressed! I think I would be a raving fact I am quite often and I haven't gone through what you have!!! So sorry that you were diagnosed in your teens and now this only 5 years later.

That's the bad news. Now the good news: sounds like you've got good docs taking care of you; you found your way here which means now you've got a place to come for information, to share whatever is going on with you, ask questions, help us out when we need it, etc; and now we will help always be here for you!

Keep us up to date on how you are doing. The pred is NO FUN at all. Cope as best you can and when it gets too much, vent here. We love to hate pred with others!

xoxo emmie

SLE, limited scleroderma, Sjogrens, Hashimoto's Thyroiditis, seizure disorder, Raynauds, Hashimoto's (or Autoimmune) Enchephalopathy

Veteran Member

Date Joined Jan 2004
Total Posts : 4151
   Posted 8/20/2007 10:38 AM (GMT -6)   
Hi Melissa,

I don't have anything else to add that hasn't been brought up by our wonderful members but I did want to add my welcome to you :-) I hope you enjoy the site and the great members here. You will find a lot of support. :-)

Take Care
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements

Regular Member

Date Joined Aug 2007
Total Posts : 39
   Posted 8/20/2007 8:23 PM (GMT -6)   
Thanks for the welcome everyone. I took Audrey's advice and went to see a movie. I'm also going to go shopping tomorrow because it turns out I'm having a real wardrobe problem now. My stomach has swollen a lot and I look like I'm pregnant. I'm hoping that it will ease a bit soon. I'll be seeing the doctors again in two days and I can't wait to bombard them with questions.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 8/20/2007 8:45 PM (GMT -6)   
Hi Melissa,

I don't know much about Lupus Nephritis, but I wanted to welcome you to the forum. There are some members here who are very educated in this area. Try starting a new thread and use the words "Kidney and Nephritis" in the topic tile. That way, the members who are knowledgeable can jump in and help.

I hope you make some good friends here.

In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator

Audrey Ann
Veteran Member

Date Joined Jul 2005
Total Posts : 815
   Posted 8/20/2007 9:06 PM (GMT -6)   
Melissa, good for you! I am so happy you were able to take in a movie! I hope it took your mind off things for awhile. My next suggestion is to go to any funny movie you can find. Laughing is very good for us as it helps our brains produce serotonin and this helps us elevate our moods. Renting funny movies is an option, too, if you promise to make it a fun trip to the rental place with a friend! Also, you might want to jot down all your questions for the docs - it is amazing how much we forget when we get into the office!

Audrey Ann
Diagnosis: Lupus and RA
Medications: Plaquenil (400 mg), RelafenMethotrexate Injections, Folic Acid, Aldactizide for High Blood Pressure, Lipitor for High Cholesterol, Actonel for Osteopenia, and Allegra & Patonel Eye Drops for Allergies.


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