Posted 6/11/2007 8:17 PM (GMT -7)
Oh ((((((pat))))), I'm sorry I just got to your post. I remember you replied to my post about feeling good and the fear of when it will end. You had told me you were feeling good too. Dog gone it! This disease really bites! I know absolutely nothing about cellcept I just wanted to let you know I understand how you feel and Just want you to know I'm keeping you in my thoughts and prayers. I'm glad however the your doctor is being cautious with your kidney's You don't need that on top of everything else. Hopfully they can find a way to work around it and get you back on the meds that make you feel human again.
Lots a love
carol
God Bless
 Lupus.Possible CREST,COPD, High B/P, Oteoporosis
xanax,triam , vicodin.5x3, Evista,. oxygen Plaquanil800mil, . effexor. spiriva, xopenex. pred.5.mil.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 

Posted 6/12/2007 1:55 PM (GMT -7)
Thanks Babs and Carol,

I feel better today. Go figure. I don't know why, but am so glad that I do. And I just stopped on my way home from the yarn store at a vegetable stand and bought the best fresh homegrown peaches, tomatoes and cucumbers, I came home and ate a peach and a tomato. If that won't make you feel good, what will!

I appreciate your sweet messages.

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 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Posted 6/12/2007 5:10 PM (GMT -7)
Yay    I'm so glad that things are looking up again.  Enjoy your fresh produce 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: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 6/12/2007 8:52 PM (GMT -7)
Thanks. It was great Hippi. I made cucumber onion tomato salad and what a reprieve from this heat! It was so good. My granddaughters ate peaches until I thought they'd be sick.

Funny how things can go up and down so fast! The next time I get down remind me how short lived it was.

Sleep tight.

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 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Posted 7/2/2007 4:27 PM (GMT -7)

Hi:

I do not have lupus, I am writing you about Cellcept.  I have hemlytic anemia and ulcerative colitis, both auto immune disorders and they feed off each other, when one acts up it seems to be a chain reacton.  Anywho... Cellcept has been suggested for me and I'm afraid of it, I'm on pred. now and have been on it almost a year different doses, I respond to it, it just takes time and then when I try to get off all havoc breaks loose.  I know Cellcept is not that old and hasn't really been tested much, but wondered how you came to the decision to go on it.  Don't you have to be on it for a long time?  Can you ever get off it?  Is it expensive? 

I know how you feel, I too am depressed now that my bloodwork is not good and I have to go on high doses of pred. again, my diseases really such too.

I'm sending you a hug and hope you will write me back, any info is appreciated.

Thanks.

Karen

Posted 7/2/2007 4:51 PM (GMT -7)
Karen,

I can imagine how depressed you are if you're going to have to go on high doses of prednisone, and since you have had to do so in the past you are well aware of the pros and cons of the high doses. I've been on prednisone for about three years or so, but it wasn't until last year that my former rheumy put me on 60mg a day and kept me there for a couple of months. The side effects were horrible, as you know. My new rheumy knew that I couldn't tolerate methotrexate and that I was desperate to taper down from the higher doses of prednisone, but my labs still didn't look good, so she suggested CellCept. I had enough faith in her and felt so bad that I didn't investigate the drug, so I didn't know how new it was or what the side effects might be. As it turned out, it made me feel much better fairly quickly. As I mentioned in my original post, my brain fog decreased, my energy level improved immensely, and my joint pain improved. I was devastated when I had to decrease it to 1000 mgs a day.

Yes, it is very expensive - over $100 a month, but my insurance covers most of that. I have not asked my rheumy how long I should expect to take it, but I do know that unless it causes too much damage to my kidneys, I'll stay on it as long as it continues to make me feel better. I haven't noticed any side-effects whatsoever from it.

Your questions are some I should ask my doctor when I see her next week. I've been sick for over three years and was so anxious to try anything that would make me feel better that I went on blind faith.

To have hemolytic anemia and ulcerative colitis acting up at the same time must make you as anxious as I was to find something that helps. If you do try it, I hope you have as much success with it as I have.

Good luck.

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 6 mg, actonel, tri-est (compounded estrogen) 7.5 mg 2xmultivitamin, calcium w vit D, fish oil, aspirin

Posted 7/2/2007 4:58 PM (GMT -7)
Pat:
Thank you very much for the quick response. I'm glad to hear you don't have side effects on Cellcept, I hopefully will not either.
I will keep you posted. I just e-mailed the doc that wanted me to try cellcept, so we'll see what he says.
Thank you so much, your words are appreciated.
Hang in there..
Karen

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