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Bugsmommy
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/4/2014 4:20 PM (GMT -6)   
Hi, this is my first time here, so I would like to say hello to all of you... I am just off my prednisone and am starting to get my symptoms back..do I call dr. Right away or give it some time ? I don't know if this is normal? If there is such thing with lupus..

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 8/4/2014 5:36 PM (GMT -6)   
Call the Dr right away, don't let the symptoms get too wild & crazy. Normally treatment has 3 parts

1) plaquenil, inhibits disease progression
2) prednisone, decreases/controls inflammation
3) one of Imuran, Cellcept, MTX - hopefully stops symptoms
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

LivePsalm91
New Member


Date Joined Jul 2014
Total Posts : 7
   Posted 8/5/2014 8:46 AM (GMT -6)   
smilewinkgrin I just want to say hello and welcome! You've already received an excellent answer for your question. I always let my physicians now when I develop new or increased symptoms and let them decide whether I should be concerned. So I can only say 'ditto'. I have dermatomyositis but notice that many of the symptoms and areas of suffering are the same. I wish you the best and hope to see you hear soon.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 8/5/2014 8:53 PM (GMT -6)   
Hi and welcome to the forum, just wanted to say hello and let you know that you've been given great advice already.

I normally call my Rheumy when I'm really in a huge flare up. I usually don't call over the smaller stuff, but I'm in a constant flare all the time, so I'd be calling the poor man every day. I just don't seem to respond to treatment very well, unless I'm on very high doses of prednisone. I've been on the stuff since 2001 and haven't missed one day of the stuff.

I hope that by now, you've called yours and he's been able to help you out and get you feeling better. This is a great forum and loads of caring and thoughtful folks here. We're not Doctors and can never say exactly whats happening with you, but if you have a question, I'd bet that someone will have had the same one or symptoms.

I hope that you start to feel better really soon, and please feel free to ask as many questions as you need.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Bugsmommy
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/6/2014 2:15 PM (GMT -6)   
Thanks for the advice. All of you and my hubby were right. I should have called right away. Spent yesterday in bed. Email dr. Last night, back on prednisone this a.m. And feeling better already.
It is what it is....

Siameezmom
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 8/9/2014 11:10 AM (GMT -6)   
Hi! Another newbie here! I was diagnosed last month. After going on prednisone and the pain in my joints got better, all I had was the random extreme exhaustion days and brain fog. I though this was not a big deal and either I don't have it or I have a light case. A few days ago I started showing a rash on my chest and back. What a mess, I've been praying it doesn't go to my face. That is when this stuff got real for me. I go back to my Rheumy in a few weeks for my first post-diagnosis check up and I'm gathering all the information I can and tracking everything I can so I can go over all of this. When she first told me it was Lupus I was like, oh, ok, I finally have an answer to all the crazy stuff I've been feeling. I didn't have a clue what questions to ask her. So I got a journal (a cool free one from The Us In Lupus site) and I'm taking pictures of my rash and tracking every little thing so I can go over everything that I now know that I need to know. The most helpful thing is having other people to talk to about this that are going through it. I've learned so much just reading the different posts.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/9/2014 2:37 PM (GMT -6)   
Welcome, newbee!
Make sure to start an introduction thread so you won't get lost in here.

Sorry you're here, but glad to meet you.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Bugsmommy
New Member


Date Joined Aug 2014
Total Posts : 4
   Posted 8/9/2014 5:14 PM (GMT -6)   
Hi siameezmom! Welcome! It. Is so nice to know others understand. Sounds like your keep great notes for the dr. I go Thursday for my first post diagnosis appt. I also am getting a rash. It sucks...the reality of it all is finally setting in for me too. It is scary knowing this is forever..I guess it will take time to find way to cope..hope you keep coming back here. Seems like a good place.
It is what it is....

Siameezmom
New Member


Date Joined Aug 2014
Total Posts : 3
   Posted 8/11/2014 3:35 AM (GMT -6)   
Has anyone gotten the rash that covers your entire body except the bottom of your feet and your palms? I started a few days ago with my chest and parts of my back, over the weekend it progressed to my whole chest, stomach, whole back, arms, legs neck and now it starting on my face. The itching is ungodly and hydrocortisone cream and benadryl don't even give me relief. I look like a freak at this point and I'm scared out of my wits that it won't go away.

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 8/11/2014 4:38 AM (GMT -6)   
Hi Siameezmom and welcome :)

I get rashes like that and they do go away eventually. In my experience it can be any number of causes. Sometimes too much sun, sometimes an infection like walking pneumonia, sometimes a flare up, allergies, even stress or being excited about something.

Oatmeal baths will help, cold helps the itch if you have a cool shower/bath or take facecloths and put them in cool water and lay them on your itchiest parts. If the skin isn't broken you can put on a vapo rub for colds like vicks and that will soothe the itch as well.

I find moisturizing is best rather than drying topicals such as calamine lotion. Coconut oil is good for rashes and healing as long as you are not allergic.

If you are scratching in your sleep put gloves or socks on your hands so you don't wake up all scratched to bits.

Is there anything you can think of that would appear to be the trigger? Do you possibly have a UTI or a cold? Have you been in the sun or overheated? Did you eat something new? Color your hair? Go swimming in a lake or sit in a hot tub? Are you stressed?

I feel for you, it is not fun. If you haven't seen your dr yet it may be a good idea.

Wishing you itch relief soon!!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/11/2014 1:29 PM (GMT -6)   
I did like that with an allergic reaction to an antibiotic. You might need to try benadryl and see if it helps.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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