Saw my PCP today and I’m either in a flare, or having adrenal insufficiency from the prednisone tapering. I am pretty worried about both… I am just sick and tired of being so sick and tired. My brother is getting married at the end of the month and this is the last I want to worry about!!
Hey I was just wondering why you didn't see your Rheumy? He/She might be able to be of more help! Ley us know how everything goes! I will say a prayer for you!
Hey
just wondering why you didn't go to you rheumy he or she may be able to help more1 let us know what happens. I will say a prayer for you.
Piewacket
Where I live there’s no close rheumy. And we’re still looking for a good one as close to home ad possible which is almost 2 hrs. Away. Very hard to find a good one. So when I am feeling really bad I go to my PCP which is right in town. He is very smart and is actually a internal meds. Doc. my mom is also a travel nurse and she leaves town tomorrow so we need answers before she left.
So sorry to hear you are struggling right now. What does of prednisone are you tapering off of and how long have you been on it? Just wondering because I am tapering off pred also but I have only been on it for a short time so not sure if I need to be concerned about anything. Praying that you start feeling better.
I have been on it for a year I was at 60 for a few months and then 20 then 10 and for the past 6 months I’ve going down 1mg. Every month. So I was at 3mg. I did have a few high dose iv infusions too in the last yesr. But got my labs back and my inflammatory markers rose and so I’m in a flare and there putting me back up to 10 mg. I just hope I start feeling better and I’m back to my normal “sick”. Thanks everyone for the prayers I’m just thankful it wasn’t adrenal insufficiency! I’m also glad my labs matched how I was feeling it’s hard when they don’t! Anxious to see what my kidney doc will say as he doesn’t think I have lupus. But every other doc I see looks at me and says I’m typical lupus. My PCP is amazing he gives me anything I need to make my life more manageable. I got a script for a motorized wheel chair so I can go to school in the fall. I’m so excited! He also gave me a new pain medication to take once a day and it’s so much better!! So thankful for a doctor that listens to me!!! 
Thanks for sharing, I am have only been taking 5 mg for the past 3 weeks and over the next 6 weeks she is tapering me off because I have a GI specialist appt at John Hopkins in Sept and she does not want me on pred when I go to the appt. I guess with such a low dose I don't have anything to worry about. Glad that you bloodwork indicated a flare and not adrenal issues. Hope the increase in pred helps you to feel better quickly. Also so happy for you that you have a wonderful doctor, that is half the battle.
Gentle hugs!
Louters said:
I have been on it for a year I was at 60 for a few months and then 20 then 10 and for the past 6 months I've going down 1mg. Every month. So I was at 3mg. I did have a few high dose iv infusions too in the last yesr. But got my labs back and my inflammatory markers rose and so I'm in a flare and there putting me back up to 10 mg. I just hope I start feeling better and I'm back to my normal "sick". Thanks everyone for the prayers I'm just thankful it wasn't adrenal insufficiency! I'm also glad my labs matched how I was feeling it's hard when they don't! Anxious to see what my kidney doc will say as he doesn't think I have lupus. But every other doc I see looks at me and says I'm typical lupus. My PCP is amazing he gives me anything I need to make my life more manageable. I got a script for a motorized wheel chair so I can go to school in the fall. I'm so excited! He also gave me a new pain medication to take once a day and it's so much better!! So thankful for a doctor that listens to me!!! :)
I was on prednisone for many many years! I found a really good rheumy and when I feel like I'm having a flare I go to him and he gives me a shot of prednisone in the butt so I don't have to take it by mouth all the time. It works for me maybe you can ask your doc about it cause taking prednisone all the time while helpful for Lupus isn't so good for the rest of you.As for your kidney doc maybe he means that a problem you have with your kidneys isn't because of Lupus {I had that happen to me it was my medications causing problems with my kidneys not Lupus} We all know that getting a diagnoses of Lupus can be hard since it can mimic other health care problems. I would not pay much attention to one doc telling you he does not think you have Lupus when you have other that think you do. I hope everything goes well at your appt. with your kidney doc.
Hope you feel better soon
Piewacket
Thanks everyone! My kidney doc. Thinks my kidney issues were from meds. He thinks its from 1 dose of neproxin i took for a spinal headache as well as from the pantoprazol(sp) And that I don’t have lupus at all. But mayo clinic (who first diagnosed me and saw me at the beginning of all this) and the rest of the docs. said it was lupus that caused the kidney problems not meds. And the med they thought caused the problem im back on and there hasn’t been issue’s. Such a confusing battle!
He wanted me off all meds to see what my body would do. Well I didn’t make getting of the prednisone with out getting sick again so I hope he’ll see it now. My doc. Wanted to get it under control before I get as sick as when I first got diagnosed. I knew it was coming I could feel it every time I went down on the prednisone.