So, I'm new to this world of lupus. I was diagnosed in May and my dr. isn't real forthcoming with info. I'm wondering if what I'm experiencing is a flare. Since Thursday night I've had fever of no more than 100.5. I only get this fever in the evening into the night. When I get the fever, my lower back hurts as well. I am totally wiped out too. Does this sound familiar to anyone?
Dear Nates tired mom,
I am not a full lupus diagnosis, but just the wiped out feeling is common to all autoimmune diseases, add the temp, it sounds like a flare to me, either that or a mild flu, which also seems to be common with autoimmune. Here is a link that may help you from the National Lupus Foundation.
I hope that you are feeling better soon. There will be others who will respond and be more helpful, but I do hope that you will feel much better soon!
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutfaq.aspx?articleid=381&zoneid=19
Hugs,
SK
Thanks SK, I appreciate any and all feedback. Its just a comfort to know there are people out there who can sympathize
Hi nates tired mom,
How long have you been on plaquenil?...as plaquenil can cause a fever as that's a side affects.
Otherwise it does sound like a flare and fatigue is a very natural thing with Lupus it can totally drain you out at times but if you temp persists and goes high you should either see your GP or attend ER just to make double sure.
I'm adding a link here which will help you regarding flares and symptoms and both yours are in it....even if i'm not in a flare i get temps and go hot around teatime onwards.
http://www.everydayhealth.com/lupus/understanding/what-are-flares.aspx
All my love Terri xxx
Thank you Terri. I've been on Plaquenil since May. The only change to that med was from taking it at 5pm to 8pm so it wouldn't upset my stomach so much. It's so strange to me that a fever goes away during the day and comes back every night. I wake up clenched in pain too! Right now I take tylenol for pain and it usually takes about 2 hrs for the pain to subside in the morning. I could really do without this!! As I'm sure everyone feels that way
Rosie
Hello Rosie,
You've been on the plaquenil 4mths then really it can be that doing it and that is a large?....i was on plaquenil 2yrs back had horrible affects off it and pulled myself off the drug, then i was asked to go back on it but to start with i was taking it at 2pm in the day in between other drugs and someone advised me to take it at night an hour before i go to bed, i take it at 11pm and no side affects otherwise but i get the sweats off the Lupus and they're worse when i flare comes.
Try the plaquenil before bed time instead and if it persists i'd see your specialist about the drug because it causes cramps in the stomach also.
Read this link and any severe affects you need to see your GP.
I often get fevers in the night, some as high as 103 which just makes the pain worse, I also get the low back pain and my dr says that my kidneys are my weak spot and feeling wiped out is common, Dont be alarmed Ive been fighting this since I was 26 Im now 47 still kickin, Learn as much as you can recognize your limitations and excersize even if it is in small time frames, I wish I had excercised more Be good to your self
Hi Kate,
You've made some good points regarding symptoms with Lupus but it may also be the plaquenil still having side affects on Rosie...really she should see a doctor and point these issues out, as plaquenil does cause bad stomach cramps because she's only been on it 4mths....some peoples bodies take longer to adjust than other's where side affects are concerned. xxx
kate said:
I often get fevers in the night, some as high as 103 which just makes the pain worse, I also get the low back pain and my dr says that my kidneys are my weak spot and feeling wiped out is common, Dont be alarmed Ive been fighting this since I was 26 Im now 47 still kickin, Learn as much as you can recognize your limitations and excersize even if it is in small time frames, I wish I had excercised more Be good to your self
Well I just got back from my GP, since my rhuemy is quite content to say, "I don't know." or "That's not typical Lupus". What is TYPICAL for lupus? Anyway, it was my GP who told me that what I'm describing is exactly a lupus flare. She put me on prednisone (yuck!) for 6 days. I love the info I get from everybody...keep it coming!
Rosie
Hello Rosie,
I am pleased you went and saw somebody because stomach cramps alone are'nt pleasant.
"Typical Lupus"....is what member's are suffering daily on the threads...i've never known such rubbish comments which rheumo's give out...mine was the same and my Dermo was'nt pleased with his attitude and he's now refered me back onto another just waiting for an appointment to arrive.
Well you know what your dealing with more with a flare and the link i gave you will help alot...i was offered prednisone when i was admitted to the day unit a few years back and refused it being a steriod.
Rosie as your flares going on and more symptoms occur just ask any questions you want as we're all here for you.
All my love Terri xxx
If your skin is compromised your 'thermostat' can't work effectively. I get the shivers & shakes & do NOT have a current infection.
Hope this small bit of info adds to your knowledgebase (so to speak).
Kind Regards Kaz
(Cutaneous Lupus 70% of body skin lesions)
I'm happy to report that the steroids are working (even though I hate being on them). No fever, no pain or stiffness. I have notices that my skin itches like crazy though! Thoughts, anybody? Does a flare cause your skin to itch too? Since my current rhuemy (I'm getting a new one) does not do a good job communicating/educating me, I am loving all the info I get from you guys.
Rosie
I x 3 times developed MRSA in my 'spots' (from scratching)? Was on Prednisilone & Advantan Fatty Ointment BUT nothing helped the insane itch at night.
Specialist said O.K. to Phenergan at night, that plus ice pacs & generally keeping myself a bit 'cold' helped somewhat. Also when I had old sheets & doona cover on bed I used a layer of Calamine Lotion as well & it was soothing on legs.
Kind Regards Kaz
Hi Rosie,
I hate the prednisone too. But when I have a flare it’s the only thing that gets me back on my feet. Even if I’m 85 pounds heavier. I hope you feel better by tomorrow morning. Keep a journal of your vitals. As you progress through the disease the journals will help you identify when the flares happen and what may be triggering them.
Best,
Michelle
Thanks Michelle,
Today (8/8) I feel great! I haven't felt this good in about a year. No joke! I cleaned my house, cooked, baked cupcakes and even rearranged some furniture. I have no doubt I'll be paying for it later, but as I told my husband, "I just wanted to enjoy at least 1 normal day." The journal is a great idea, I've been working on one.
Rosie
Congrats on the good day, Michelle, gotta grab them and take advantage of them when we can, never know when the next one is coming around!
With me, my flares are different. I'm still learning about them, too, even though I was diagnosed 5 years ago.
I do suggest that you keep a daily 'diary' of your flares and symptoms. Write down the different changes you feel in your body everyday so you can remember when you see your doctor.
Hope this helps. And hope you feel better.
Hello Rosie,
I am pleased to hear the prednisone up lifted your body to going mad.lol
Mind you wen you do get that good mentally alert besides your body bouncing into action that's when alot of member's get things done.
Like SK (susan) said you never know when the next ones coming....how you been feeling today though in general?
All my love Terri xxx
Today's going pretty good. I had a little pain this morning in the elbows and wrists. I figure that's probably b/c I'm decreasing the prednisone. I did go on a morning walk (2 miles)! Haven't done for a while. Even my mind is alert...I don't feel so absent minded. I know when the prednisone is done, things will change. I'm taking advantage of just feeling "normal" for a few days. How are you feeling?
Rosie
Hello Rosie,
I am pleased today as'nt been to bad either and sorry about any spelling mistakes..it's because i wear gloves while typing.
That's the trouble when you have something that kicks into your system quick and then when you start slowly taking it down BANG your feeling the aches again....good god woman just becareful 2 miles after pulling out of a flare, i'm only concerned because of the prednisone just picking you up.
Mind you i can understand in a way you wanting to take advantage of your mind being alert...i'd give anything to be back how i was...my legs are paining me constant to walk and my left is going darker and even my hubby said give it a couple of years you'll be in a right mess with your legs concerning moving as this muscle wastage is just stripping me of strength and i've had more hot sweats in the last couple of days but that could be due to me not being long back on the plaquenil, mind you i have it off the lupus besides.
Well enjoy the rest of your day and hopefully you'll relax.
All my love to you Terri xxx
nates tired mom said:
Today's going pretty good. I had a little pain this morning in the elbows and wrists. I figure that's probably b/c I'm decreasing the prednisone. I did go on a morning walk (2 miles)! Haven't done for a while. Even my mind is alert...I don't feel so absent minded. I know when the prednisone is done, things will change. I'm taking advantage of just feeling "normal" for a few days. How are you feeling?
Rosie