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New symptoms
micbrewski posted:
How is everyone doing? Me hanging in there. I have been posting on and off for alittle while now. There are alot of helpful women here!! Even if its just to vent. It's nice to know if you have questions they are here to help! I have some new symptoms, I feel very itchy on my face and scalp. I lose the use of my hands sometimes, only for a moment. the things I do every day and then I cant?? Still have the low grade fevers. Just about every day in the evening. The get up too about 99.6 or so. I know they say your temp is higher in the evening but every day? I have a cough. I thought its because I smoke, but its not a smokers cough. Hurts to breath in hard sometimes. I know I should quit! To much stress in my life. No excuse! I dont know if these are something to do with Lupus or what. Jessi1966 had said it could be UCTD. Are these symptoms apart of that. Well I guess you have read enough.
Thank You for you input, Roxann
rumfar6 responded:
Sounds like a flare to me but I'm not as knowledgable as others on here. I just wanted to suggest an E- ciggarette. My husband and a few friends have bought this (online and at the mall) and have found it very helpful. You can chose the level of nicotine and flavor you want and step down to nothing. They all say that the heaviness in there chest is not there in the morning anymore and they can smell things again. And yes it even has a vapor puff when you take a drag :).

I hope you feel better soon
K2isKsquared responded:
Low grade fever in every evening, extreme fatigue, arthritis, and itching are certainly part of my flares.

Flares are a little different for everyone. However, Lupus tends to be a repeat offender and go back and attack areas it has been before. Over time, most Lupies begin to see a pattern and know when they are flaring.

Good Luck,

lupusbay replied to K2isKsquared's response:
I had this also it was 100.9 up to 101.5 and a headache to boot, lotsa fun see if your rhuemy will give u a z-pak it is not just an antibiotic but an antiimflamatory also and helped me greatly
micbrewski replied to rumfar6's response:
Hi Marie,
Thank you for your replay. Sometimes its like pull teeth here. I still dont know what I have. Just looking for advide. Still dont know my flares. (learning) I guess in time. I have tried all as far as smoking goes. Im looking for answers cant find any. I would like to be normal again. I asked my Rhemmy about Fro and she said no, but I think sometimes it might be. But who knows go with the flow, sometimes safere that way.
Thank you again, Roxann
micbrewski replied to K2isKsquared's response:
Thank you for your post. I wish I knew what they are. As I said before in time. Still dont know what is wrong with me. Maybe its all in my head(. NOT!!) I have noticed the same areas time and time again. As far as the itch goes. I have an app. on tuesday Ill let her know of the new symptoms.
Thank you for you in put, Roxann
irolyne responded:
Sounds like my issue when the rashes return.I feel tingly and a sorta burning sensation. When the rash part is active, I have insomnia and go days without being able to sleep for long, One srtange thing i have noticed is that my throat swells and I get very short of breath and I begin to spit up a very thick bright white glue like substance. My lymph nodes are swollen at this time as well. I still have NO dx...but still seeing drs. so hope springs eternal!
Once this part is done, I will cycle into the severe fatigue phase which comes just as my period begins. I slept 120 hours during my last period! I have complained to Drs. even ones I worked for for a long time about not feeling right and not having any energy.
I did test positive for low vit. D, and I had an Epstein Barr Titer ran and my IgG was 690, but no one know what that means, and I never had a positive mono test.
In March my right leg began to hurt and it just got worse as time past, I saw a orthopedist and had a bone scan. I had been walking around and working on a broken leg for over a month. It was after my leg healed that my rash began and then I just finally gave into the safe harbor of sleep. I have been tying to stay out of the sun during peak hours because I have proven to myself that if I get direct exposure, I will soon break out in brand new bumps, rather than having the former ones return in the same place with each flare up.
Last night my throat was swollen. I was having dinner and suddenly my food stuck in my throat and I could Not swallow! I was choking and couldnt make a sound, My boyfriend rescued me by performing the Heimlich maneuver. It was frightening after it was over, I just really want a real diagnosis and for some Dr to LISTEN and take me SERIOUSLY!
I have seen a multitude of doctors and gone to the ER 3 times....First dx STAPH all over,,,No it wasnt...but I am not a Dr.
2nd one...Scabies Maybe? NO it doesnt ITCH!
3rd dx with a Dermatologist....NEURODERMOTITIS!?
No I promise i am not digging holes in my arms!
Finally had a biopsy on one of my lesions on my arm.
The dr gave me lab results...its not cancer.,, I never thought it was,,,but had I been tested for lupos? NO! I have had the biopsy done and a CBC in early June and a thyroid panal....all was "normal" they said. They also ignored my Shortness of breath, trouble swallowing, and swollen throat...Oh looks fine...Sigh!
I have an appt. with a Neurologist on 10/08...I have aches and pains and such but so far they;re mild.
I have complained of fatigue for years, Night sweats suddenly that soak my hair and clothes, but this comes and goes,
I have been in treatment for depression and ADHD primarily INATTENTION, So happily I have a med regimen that works well for me.
In a way it is sorta nice to find that I am not imaginating these odd symptoms and that there really is some sort of issue going on with me.
I don't really want a to be dx with Lupus but to me it is sorta looking that way! I just want answers!
Thanks and hope you have many weeks of symptom free days!
micbrewski replied to irolyne's response:
Hi Lori,
I feel your pain. Thank God your boyfriend was there for you!! I Went to see my Rhumy on Tuesday she sent me in for more blood work. I seen one test was for Lupus. I hope I get some answers. I have night time fevers, not as bad as you I thought maybe it was Hot flashes. I dont get a period any more. So I can't go by that. Its been 10 plus years since I had one.(Hysterectomy) I also had a reaction to the sun, Dr said it may have been from my Meds? I havent try it since. Maybe I should,I got cuts on my face and my head, also my arms. Now I just feel itchy. She said it sounds like a flare so she put me on Medrol pack. In the past all my test results come back normal. She said she hasnt tried this one yet, so well see. Good luck to you. I hope you get some answers soon.
Best wishes ,
HG1948 replied to irolyne's response:

I too have tested postive for the Epstine Barr Virus. At the time they thought that my IgG titer was high because I had mononucleosis. Which I probably did because my teenage daughter at the same time had "mono" and an identical titer level.

From time to time, the Epstine Barr Virus can reactivate!! (;-)
I can't remember what my titer levels were, but what the range means from "low-high" usually appears on the lab report sheet in a column to the right of the individual's test result level.

Get copies of your lab reports and you can look this up for yourself.

Good luck to you.

HG1948 replied to irolyne's response:
I just read another post and LupyLisa shared this website with someone else, re. deciphering their lab test, so I am posting the link for you here.


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