Confused and depressed

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.

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.

Love,

Pat

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

Hi Melissa,

No wonder you're confused and depressed! I think I would be a raving lunatic...in 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

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.

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!

Prayers!