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Posted 2/17/2013 5:16 PM (GMT 0)
mad  Diagnosed with lupus 3 years ago.  Got sick at christmas, and things have gone down hill from there.  Feeling unwell, dizzy, headaches, hands and ankles hurt, headaches, swollen right eye and cheek, now have protein and blood in urine,  now am having trouble getting my words out.  Can anyone help me.  Taking imuran, prednisone, hydrochlorothazide, ramipirl, and cipralex.

 

Posted 2/17/2013 7:56 PM (GMT 0)
I am so, so sorry that you are going through this. I was going to write this morning to vent as well because I am also in a flare. I started to get sick with one of the crazy bugs running rampant through the school I work in, and last night I also felt the flare come on-malaise, fatigue, joint pain, skin pain, a facial rash. The cold I had was fairly mild....sore throat and head cold. This morning I woke up with a low grade fever, swollen feet and every joint screaming. What helps me is lots of rest, doing as little as possible and being kind to my body. I am used to this. It sounds like you may need to see your doc, especially with blood and protein in your urine. Hang in there!!! And remember, this is a good place to vent. We understand what you are going through.

Laura
Posted 2/17/2013 8:27 PM (GMT 0)
Have you ever had facial swelling or trouble getting out your words.  Been on prednisone for 2 weeks, started out at 60 now tapering down, now they have me back upto 60 for 5 and then down to 50 for 5 etc.  don't understand why i keep flaring while i am on all these meds.

 

Posted 2/17/2013 8:32 PM (GMT 0)
Thanks Laura,
I am very confused and don't know why this is all happening been to er 4x in last month sent for 2 ct scans, and facial ultrasound. This all came on after the flu and then i got a sty, and then 1 week later shingles, they say my blood work is fine can't get into rheumatologist unti mid march, very frustrated right now.
Posted 2/18/2013 1:49 AM (GMT 0)
I completely understand your frustrations. I have not experienced facial swelling, just the rash and heat that goes along with it. There are times that my brain doesn't work and I do find myself searching for words. It's really a drag when it happens at work. It sounds like your body is having a real difficult time beating back this flare. I would call the Rheumatologist's office and see if they can at least squeeze you in. Or get placed on a list if there is a cancellation. It's not right to be feeling so miserable. I will keep thinking good thoughts for you.

Laura
Posted 2/18/2013 2:06 AM (GMT 0)
Were your shingles on the face. My face and eye swelled when I had shiingles on the left side of my face. Hope you feel better.
Posted 2/18/2013 5:02 AM (GMT 0)
No shingles were on my left, back of neck and went down shoulder and arm. Not being able to get my words out is very frustrating and embarrassing. Don't understand what is happeing to me.
Posted 2/18/2013 10:25 PM (GMT 0)
I get like that...having trouble getting the right words out.
I get very foggy and confused at times, too.

I just try to relax and take my time in talking. If I push the thought or word it gets worse.
Posted 2/28/2013 5:10 PM (GMT 0)
I am new here and I know just what u mean abt the verbal stuff. I believe that I have been a fairly educated person and although I'm not working currently I don't feel that I'm ignorant. But...having sd that, I have been having terrible issues in the memory dept! I go to speak and right in the middle of my sentence, I forget a word....a word I have probably used a thousand times before...but it just won't come out. I feel so very stupid at times that I just don't talk becuz I'm afraid this will happen while I'm talking...lol. My Rheumy referred me for an EEG, and they found some lesions, but the doc that did it sd he was mainly concerned abt ruling out MS and did not feel that this was the case. He felt that it was prob fr my Lupus and that was that! It seems to be getting worse, and at times I think maybe it's becuz I'm not working.....using my brain?? shocked IDK.... I hope you get some answers but maybe u could possibly just drop the word EEG to your doc? Possibly give u some peace of mind? I think I'm going to try and do some crossword puzzles or something to get that gerbil running on that wheel in my head!! Best of luck to you;)
Posted 2/28/2013 5:35 PM (GMT 0)
The gerbils are walking, not running, due to Lupus activity...nothing will be found in the brain scans. Your inflammation markers may be high (or they may not). Take some Methyl B-12 and ask your Rheumy if it might be time to consider some more aggressive medications...like Imuran, Cellcept, or MTX. These are all commonly used with Lupus.

18 months on Cellcept gave me back my brain...mine was much worse than just language recall. And Cellcept seems to have made my Lupus very quiet. ("Quiet" being the word they prefer over "remission".)
Posted 2/28/2013 11:18 PM (GMT 0)
I've resorted to doing hidden object computer games and suduko to help tease those gerbils from their sleep. They nap a lot with me during bad flares. Most days they meander alone. ;)

I had testing done to find out why so slow. The doctor said I had above IQ but my processing skills were in the 14% group. It's there...it is just slow getting out of the gate.
Posted 3/1/2013 6:17 AM (GMT 0)
I'm not sure who you were responding to or if it was a general response, but I am on Cellcept and Methotrexate for the Lupus and many other meds to manage back symptoms....speaking of which I have more compression fractures so I'm in a real pickle as far as pain goes....oh and awful shoulder pain, I guess it's the Bursitis. Depression is climbing up quickly due to all this. I do my best cope, but a lot of extraneous factors coming in right now too....grrr. Ok, shutting up....is there a place to blog here...maybe that would help? I have to talk...it's just me. My poor husband...I try not to put him on overload cuz he already worries so much.... Is my siggy too long?
Posted 3/1/2013 6:43 AM (GMT 0)
If you want a special thread just to vent and talk it out start a new thread and name it "Angel's Worries". We'll throw in some comments now and then but vent away.

Do you see a psychiatrist or psychologist? They are great in venting to. I've been seeing one for 3 months now and am feeling so much better.
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