More stuff

So I decided I would go back on the plaqunille so I could get the methotrexate to get of the steroids. So I called the rheumatologists nurse and told her I would agree to the rheumatologists plan of care. 3 weeks later and three phone calls later asking when they were going to send in the prescription we got a call monday from the rheumatolgist blowing off all the phone calls we made and not acknowledging my calls saying I would agree to her plan. GRR! Then today when I saw the kidney doctor he read parts of her notes and she completely lied in them! Needless to say I will no longer be seeing her.

I went into see my PCP on monday as I was just not feeling right and I have not been able to eat food for almost two weeks. I take a few bites and I am ready to throw up, and my right side is hurting SO bad, I can hardly even drink water. So yet its another thing on top of everything else. I have already lost 6 pounds in less than two weeks!! He thinks my ulcers might be back as this is what happened when they first found them almost a year ago. So I see the doctor who does the EGDs April 7th which is along ways away if I cant eat. I also saw my kidney doctor today and he ordered a ultra-sound of my gallbladder to make sure that's not it as my white blood count is a little high nothing to concerning but it is a little high so he wants to make sure. But the good news is I am finally on my way to lowering my prednisone dosage!!! I will be going down one mg a day every month. So since I am at 10mg in about 9/10 months I should hopefully be off prednisone. I am a little worried I will never come completely off of it, my PCP did say there is a possibility that may happen, only time will tell. I am just thankful that my kidney and PCP are finally working together and trying to figure out a plan.

Praying for you!

I made it down to 5 mg of Prednisone every other day but I couldn’t totally get off of it…
My docs don’t want to prescribe anything much for pain so I guess I will be on the Prednisone forever. I can only take 1 Vicodin 5 times a day and it doesn’t help much at all. Good luck! Prayers for you!

10 mg is such a small dose- so considering you were in kidney failure just a few months ago- not sure of the rush to get off especially since you don't feel well . Sometimes you just can't get off prednisone or sometimes you can only to have a relapse where you have to restart the whole cycle again- high dose slow tapering etc. Me I prefer to prevent the acute relapses which can cause permanent irreversible damage - that hospital stuff is not fun!!

They want to try there best to get me off as it is just devastating my body. They think now its causing thrush, so yet it is one more thing. Thankfully my mom called and they were able to move my appointment from April 7th to this coming monday! YAY!!! Had the ultra-sound today and I am not sure what to think. there was "slug" but the lady said thats normal. And then she asked "you have lupus right?" I am like yeah... and she then went on to ask if it has affected my kidneys. So not sure if she saw old stuff or new stuff. I guess we will find out. I just want food as this point tried eating yesterday and I was sick all over again/

Thrush is so not a big deal - swish some Nystatin for a couple of days- gone. One thing to be careful is that it may be your illness that is causing your symptoms- only time will tell