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My test results are back and it's not very good news!
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Lupylisa44 posted:
According to my rheumy,my urine protein has increased again. It went from 1300 mg 6 weeks ago to 2300 mg. This is obviously not good news.

He said to continue trying to increase my dose of Cellcept to at least 2000mg per day. It sounds like a simple solution, but I have been having trouble going higher that 1500 mg because it rips my stomach to shreds! Every ttime I have gotten the dose above 1500 mg, I vomit. this problem never existed with the brand name version of cellcept, probably because it has an enteric coating which the generic does not. I purchased some empty gelatin capsules from the health food store and will put the pills in them to see if that might lessen the effects on my gut.

The last thing I want is for my lupus nephritis to get out of control like it has in the past. I may just have to bite the bullet and fork over the $2500 for the brand name! Which I really cannot afford!

Lupylisa
With love, with patience and with faith, we'll make our way.
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lisaisweavebee responded:
Aww...Lisa!!! That just plain sucks!!! Can you contact the makers of cellcept to see if they can help with the cost? I wonder if folic acid would help? I know they gave it to me with the metho. To help with nausea.

I hope the gelatin capsules help because $2500.00 is just plain highway robbery!!!! I was looking at my costs for this year and I have had 49 office visits (so far), 3 surgeries, 7 ER visits, 3 CAT scans, 17 sets of labs....oh and I have 2 MRI's schedule for tomorrow... The cost is crazy!!! I can not imagine having a drug that costs that much!

When do you see him again? Is there any other meds that work for nephritis?

I am so sorry your news wasn't better! Wish I could help some way but know I am here pulling for you!!

Lisa
 
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robertafive responded:
I have the same problems as you. I take Cellcept and I am at 3000 mgs a day but each time they increased my dose I vomitted. But it only lasted one day for me. My dr prescribed Pepcid to help. Have you tried something like that? I take it first thing in the morning. Then 30 minutes later I take my Cellcept then 1 hr later I can eat breakfast.
I am scheduled for another kidney biopsy friday and I am supposed to start with infusion treatments in the next couple weeks.
Having insurance doesnt mean all your (financial) troubles go away either. I have a $2000 deductible and an out of pocket expense requirement each year. My biopsy friday is costing me $700. Lupus is very expensive!
Roberta
 
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nancyj95 responded:
If your rheumy will write to the insurance company, you may be able to get a generic exception so you can get the branded at a lower price. I have one for pravachol because the generics send my liver enzymes thru the roof (I have autoimmune hepatitis in addition to Lupus and Hashimoto's). I am lucky that I have no problems with the generic cell-cept as I've been on it since it came out. I was up to 2000 for a year, but have been able to back off to 1000. My rheumy says I'll probably never be able to go off it completely. It can't hurt to try. Wishing you good luck and better health!


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