I find it interesting that we can be classed as "in remission" just on blood work. I achieved that status recently for the first time since diagnosis more than 15 years ago, but am not able to lower any of the meds I am on (Medrol, CellCept, sulfasalazine and neurontin plus others for Hashimotos and Chronic hepatitis). If I so much as lower the Medrol by 2mg I suffer greatly. I do take lots of omega 3 supplements, B-1 and B-6 in addition to the prescription meds. Why can't I lower any of them??????????View Thread
I don't tolerate prednisone well, so my doctor uses Medrol (which is a form of prednisone) which works great for me. Had to use the pred for a few months when the other was unavailable and just found it wasn't effective for me. Ask your doc-if it is only every other day it will be a small dose and you should be OK. Good luck!View Thread
I've had osteo arthritis in my feet for years! As a primary grade teacher, it was an almost constant problem. Unable to take most arthritis drugs, I just put up with it. Being on steroids for the Lupus has helped. Now that I'm retired it is lots better.View Thread
I have been on Cell Cept for about 3 years (daily) and although I'm only on 500 mg 2x a day now, I have never heard about this. My doc says I will never be able to go off it. Was on triple this dose for almost a year when I was in a constant flare. I'm one of those who'll probably never be able to take advantage of meds which might get me off steroids. I have latent TB and chronic hepatitis-two conditions which although under control have a big influence on what I can do. Like you, I only take antibiotics when really needed. NancyView Thread
Welcome, and sorry you need to be here, but the help from others going through the same things is tremendous! I was diagnosed about 15 years ago and was blessed with understanding friends. Could never tell my mom, who was my only close family at the time-she was in a nursing home. I found the book Living with Lupus by Sheldon Paul Blau MD and Dodi Schultz a help to me.. It's written pretty much in laymen's terms. I don't know if there's a newer edition as the one I have is from 2005. Wishing you the best of luck and remember we are here! NancyView Thread
Here but having lots of issues because my body reacts to the severe swings in temps and weather we've been having in our area (metro NY). I mostly read, but don't post often Hope you are well and will have a great New Year!View Thread
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!View Thread
Looking and feeling more like spring here in NY with 60 degree temps! Guess that early snow was a real tease for us. I am an online shopper-can't pound the mall pavement as it hurts too much. Most stuff is on the way. I really bless the internet! My house is decorated almost completely and I'm busy baking. Have learned to take breaks while I'm working or else I end up in bed for days! Have a good week! NancyView Thread
Hi! Sorry to be a day late. Good Thanksgiving, but was disappointed when I tried to enter a clinical trial and couldn't because I also have latent TB. Doctor wanted me to treat it but two other docs say "no" because of all my drugs and the chronic hepatitis. This was one where I didn't need to go off meds -so I am disheartened that they won't take me. Guess it is best for me not to try. My regular rheumy confirmed my decision. At least I found a younger rheumy in case mine retires!View Thread
I took it when first diagnosed and turned out to have a terrible allergy-not to the sulfa, but to the quinine in the drug. The itching was unreal and took 3 weeks to get our of my system. I do take sulfasalazine-another sulfa drug that doesn't act like one. My rhuemy told me not to take any others because some regular slafa drugs can cause flares.View Thread
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