Hi everyone. Wanted to let everyone know i'm alive.. had a strange occurance and have been taking it easy.. maybe some of you have had the same thing.. Thursday my daughter and i went shopping. By the time i got home i was feeling out of sorts. Dont really know how to explain it.. By Friday morning my mouth on the inside was full of hard white pus filled bumps and my throat feels dry and raw.. Well, dumb me , i didn't think about finding out the days my new Rheumy was open and after rushing out to his office found out he is closed on Fridays
I called my reg GP and could not get in, but his nurse got him to give me oral nystatin with a numbing agent. The blisters or what ever they are started getting better, but Sat night my eyes started hurting really badly and when i looked at them found out i have big water filled blisters all under my top and bottom eyelids. My husband wanted to take me to the E.R but i opted to wait until today to contact my Rheumy.. Because That's usually what the E.R Doctor tells me to do then charges a couple of thousand dollars to give me that advice.
Anyway i dont know if it was the Sun,the Lupus or the Plaquenil that caused all of this.. have any of you guys had this happen?
I am so sorry that you are having such a hard time! I can tell you that I get much of what you are describing and I go into a big flare if I go out into the sun OR into a store with florescent lighting without covering in 50 plus sunscreen, usually long sleeves and a hat (I am looking for another one because my dog ate the last one LOL). If you have become sun sensitive then you are very possibly sensitive to the lighting in most stores and officies as well.
You might want to start keeping sunscreen (face and body) in your purse and a hat in the car. Run all of this by your doctor but I really would start being more careful when in the sun
Success is not final, failure is not fatal: it is the courage to continue that counts.
tgal is right the sun and lighting is our enemy. It can cause alot to happen. When I am in the sun or even the stores with low set light fixtures I get flushed hot face light headed and start to sweat like a hotflash. It makes my ache in my muscles.
Thanks ladies,now let me share this and you both are just going to die.. I called my Rheumy this morning.. They couldn't get me in and really didn't understand what i needed. Now i have only seen him personally once, his nursed called with my dx. Okay so i tell her that i have blisters in eyes and mouth and she tells me he doesn't deal with those issues and i needed to go to my eye doctor. I tell her in no pretty terms how i feel about that and she says "wait let me talk to the doctor. so a few minutes later she comes back on and tells me he wants to lower my dose of Methotrexate or what ever it was he tried to get me to take and i had refused.. Okay then i tell her i'm not on that. i am on Plaquenil and she says no you are not..She's the freakin nurse that called me back and told me they had called the Plaquenil in.. After i explained that to her she said let me call you back.. 30 minutes later the other nurse calls and says he said that he would see me tomorrow at 3;45 or i could go to the eye doctor first as the pLaquenil could have already damaged my eyes???? i've only been on it for about 9 days??
Okay so i say put me down and you better tell him i will be there to talk to him tomorrow, this is his problem not the eye doctor.. both nurses told me the plaquenil could not cause this and it was not a symptom he would deal with.. now all you folks out there with lupus.. who deals with issues like this when you have them. I am so mad
Oh yeah and another thing. I told them that i was having a real problem with being sensitive to the sun and was having pain in my ribcage and chest area when i breath and they told me this was something i need to see my GP for?? This doctor is listed as the only doctor in my area that treats Lupus Patients so i assumed they had seen others with this problem. I am so confused and mad... Sorry i had to let it out.
Wow, you've got a winner like mine - always trying to palm the problem patient off on someone else. Is there any way that you can get a referral to a rheumy who is attached to a teaching hospital and might actually know what he/she is doing?
Hi Marla, yep he's really been a hoot so far..My daughter[the Nurse] begged me not to fire him yet and give him another chance.. Vanderbilt is about 220 miles from me so that would be the closest that we have. I think i will stay with him for awhile since i'm on low dose prednisone now along with the Plaquenil and Naoproxin. The really strange thing about my last visit was right before i left he asked me was there anything else i wanted him to write me a script for????? could be the reason his waiting room is always full.LOL
Yeah...seems like she has a real winner!
Having a great doctor should not be so hard...
as if we don't have enough to worry about...
Craftkeeper - I am in shock. I hope your visits with him get better. In the meantime, keep pushing. YOu have to be your own advocate when it comes to health...even more so with a doctor like that. take care.