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Discussion Starter #1
Okay, now I know this is going to sound weird, but bare with me please. I am waking up with either one or both of my eyes nearly swollen shut and the tight tingling sensation in my lips with them swollen too. It doesn't happen everyday. In fact 10 days ago, I went in to see my doctor because this was the second time that it happened within a week. They thought the first time that it was an antibiotic, I stopped it and went on a different one that I had taken many times before. All was well. 3 days after finishing that antibiotic I woke up again, went to see the doctor, said it was something but not sure. My lupus doc called me that day to ask how I was and I told him about my swollen eyes and lips and he said it was probably due to the antibiotic in the mouthwash that he gave me 3 weeks earlier. Great, now we know what it was. I stopped the magic mouthwash. Now it is 10 days later since that last appt and my face is swollen, especially my eyes and lips. I am wondering if it could me my lupus? I was outside yesterday, 14 hours at Cedar point, with multiple applications of SPF 70 and still got some sun pinking on my chest, but my face got burnt. Once I got home, I was completely achy and still am. I see the doctor this morning and will ask her, but she isn't my lupus doc, so I don't know if she would think of it. She is more concerned with my Blood sugars. She diagnosed me as Diabetic 10 days ago and I am goin in for a meter check ( She won't like the numbers they were from 200 to 600) and to see if I am tolerating the Januvia. I am wondering if I should call me Lupus doc too?
 

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Hello Mali,

You remind me of a time long ago when i had blood poisoning.

I wasn't diagnosed with lupus back then and I had a bump on my head that my doc at the time thought might be infected, so he gave me an antibiotic.

That weekend my daughter and I went to the beach. Of course, we walked the boardwalk, again wasn't diagnosed with lupus so didn't even think about sunblock.

A day or so later, on our way home, i just kept itching all over. By the time i got home my entire face was swollen. I had welts on my body that kept spreading. I had to take a cold shower to relieve the itching.

I finally, got to see the doctor that Monday. He did a simple test of writing my name on the back of my arm with an unopen pen (no ink). By the time he finished checking my face i could see my name as clear as day in red from the swelling.

He said i had blood poisoning from the antibiotic..

If i remember correctly he gave me something similar to benadryl but in pill form.

It was a tiny little pill but very potent, as it cleared up the swelling instantly, but put me to sleep for almost a day. I think it was an antihistamine. I'm not sure.

Antibiotics and sun don't mix.

As far as telling your rheumy about what is going on.

I tell both my doctors i will be informing the other doctor of changes made. I don't want what one doctor does to clash with what the other doctor does.

Sorry to hear about your diabetes. I'm borderline myself.

I hope it all works out for you.

Good Luck
 

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Discussion Starter #3
Had my appt with my GP this morning and she got my lupus doc on the phone during my appt for a conference call. They believe it is some type of sun sensitivity and contributited to the methotrexate. I am to stop this, but not happy because it is the only thing that works other than the prednisone. I am to see both of them on Sept. 5 and they will review my plan of care then after the metho is out of my system. They have put me back on 60 mg of prednisone a day to help with the joint pain and the sun swelling. This obviously not what I wanted to hear, because the prednisone plays havoc with my already out of control blood sugars. I just hate having to stay in the house and not be able to go outside for a day and enjoy my family. But if anyone other than friends and family would see my face, they would think that something is seriously wrong with me or that my husband beats me. Just not fair, but deep down in my heart, I have to say that yesterday spent with my children was totally worth it, although I am seriously paying for it today.
 

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Well mali at least you have supportive doctors that are looking after your best interest.
I guess we have to have patients when our meds are changed like that. Especially when they work,,, but the side effects are not worth staying on them.
Maybe wearing a scarf about your face will help hide the swelling. Or better yet plan some events in the evening if that is possible.
I hope it all works out for you,,
take care
 

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Hi Mali, I just wanted to say that this time I sincerly hope that you have the
right answer. I know what you are going thru must be very painful. But
try to stick with it and see if it works. My rule of thumb, any changes in
your health or meds, always make sure that your Rheumy gets told about
it, it has to get into your chart. Wishing you well, smile.
 

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I'm not sure if this is the same but after I took antibiotics for a sinus infection my mouth (lips, tongue, and throat) all became swollen. I also formed ulcers in my mouth as well. Doc says it's the lupus reacting to the antibiotics. Next time I will weigh my options between a sinus infection and a swollen mouth.
 

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Discussion Starter #8
I ended up in the ER on Monday night with Cellulitis of my eyes. Still don't know what the rash is from other than it gets worse when I am heated or in the sun (Even using all Lupus sun precautions). I saw my doc today for a 2 day follow up. My doc took me off of ALL my medications. All antibiotics, my lyrica, my metho, my folic acid, my b12, my Januvia, My glucotrol. She left me on my Toprol for my BP and is still having me take the prednisone. On top of it, she started me on Insulin. I am scared to death of the stuff, but I did okay with it tonight and my BG numbers have been better than before. I have an emergency appt. tomorrow with a dermatologist. My Lupus doc was in agreement with her again, so I will follow the course.

Does anybody have any suggestions????? I am so overwhelmed and confused right now. I am also uncomfortable, It feels like I have sand in my eyes and shards of glass stuck in my eyelids.

I just need to make it until tomorrow.
 

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Hi Mali :hug: I cannot imagine having cellulitis in your eyes :eek: it's a very serious condition from what I have just read.

I'm afraid I don't have any suggestions Mali :( (((((((((hugs)))))))))))) but I do hope you get some and fast tomorrow. Let us know how you get along. Whilst the Dermy may be able to sort the rash out, you may need to see an Optho for the actual Cellulitis . What did they give you for it, I have just read that they often keep people in hospital with it and on IV antibiotics.

sending hugs,

love Lily
 

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Discussion Starter #10
Update

Hi all!

My "rash" is some kind of lupus rash that is exacerbated with heat and sun. I guess I can no longer go out during the day even with SPF 70, longs sleeves and hats. It got infected therefore causing the cellulitis. I was put on a steroid ointment and am now taking IV antibiotics at home. The nurse was just here and showed me how to do everything. I go back to the GP on Monday and the dermatologist on Thursday. Looks like they have it figured out. Hopefully the doctor will put me back on my lupus meds on Monday. I will beg and plead!

Thank you for the suggestions and support. I appreciate everyhthing. Hope all is well with everyone else.
 

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Discussion Starter #11
Update on Swelling eyes and lips

It happened again. Even after being taken off all of my medications. My pain has been unbearable. My eyes started itching on Tuesday night. I took benadryl and went to bed. I got up and both my eyes were swollen. Within two hours my lips were swollen and tingling along with my tongue. My hubby took be back to the er since my tongue was involved this time.

PEANUT ALLERGIES!!!!!

of all things. I didn't make the connection until the doctor asked my what time my itchy eyes started and what I had to eat that day. Bingo, 7 pm I had a handful of peanuts to tied me over while dinner was finishing up. by 9 pm my eyes started itching and slight swelling.

He pulled my chart from the last time I was in there, I had the same thing, (tongue not involved) but had violent tummy troubles :eek:

He gave me 125 mg of IV solumedrol ( now my bs are way out of wack again),
IV benadryl and IV pepcid ( a stomach medicine that is also a type of antihistamine, an H2 blocker, where benadryl is an H1 blocker)

Needless to say, my eyes are no longer swollen but still itch, my tongue is fine, my lips still itch and still slightly swollen. I am prednisone 50 mg a day for 5 days. I also see my Rheumatologist today as an add on because I hurt so bad yesterday. I wonder if the peanut allergies can cause the joint pain, especially at the base of my head? That feels much better today, I can actually turn it side to side. I am sure the solumedrol helped with that.

Just a gently reminder, that I guess not everything can be chalked up to Lupus!
 

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Hi Mali-cas,

It is a good thing your husband took you to the ER before your reaction had gone any further. Peanut allergies can potentially be very dangerous situations. Did the doctor make any mention about seeing an Allergist? If not I would check with your GP where to go from here.

In researching peanut allergies I didn't see any mention of joint pain. The following are a couple of sites that might be of interest to you.

http://en.wikipedia.org/wiki/Peanut_allergy

http://www.mayoclinic.com/health/peanut-allergy/DS00710

Take care,
Lazylegs
 
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