its a lupus skin rash from being in the sun constantly because i was misdiagnosed for 2 months. thats all they told me. they said the ana would tell what kind of lupus.
Dewing3569 said:
Okay then the biopsy result should tell you the type of skin rash it is! But it is not that important! I am just glad you are finding some relief!
Hope you are having a good night! Deenie
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kam0ra said:
i did have a biopsy back in september thats how i know its lupus i just had the ana test to confirm SLE
Dewing3569 said:
Kar0ma
Just an FYI, there are several different kinds of rashes with lupus! Some are more photosentative then others. Some leave scars and some don't. Some are very itchy and others are not. Some are vasculitis and some can be caused by psoriasis or eczema. Just saying, It is best to have the rash biopsied so that way they know for sure what it is and how to treat it. Most treatment for SLE lupus is the same for skin Lupus. In my case I have a very rare form of cutaneous lupus. I know you said you have a lot of photosentativity to the sun and so do I. Well if you can't be outside because of the rash, like me, it will help you when you file for SSD/SSI. I believe that helped me to get approved for disability on the first try! I had three positive biopsies. The more you give to social security administration the better off you will be to receive approval! At the time I filed for SSD, I did not have the diagnosis of SLE only cutaneous lupus and I received approved in 49 days after filing. My SLE diagnosis can after the fact! My attorney could not believe it! I was very detailed and specific on the documentation that SSA had me fill out. In fact my attorney told me next time not to be so specific to be more general! I have a few other diagnosis which may have helped me as well.
I look at it this way, the more records and information that you can provided to SSA the better off you will be!
I hope you are doing much better now! Best of Luck! If you decide to do the skin biopsy please let me know how it turns out. I am here for you anytime!
Deenie
kam0ra said:
all they told me was that it was lupus
Dewing3569 said:
Kam0ra
So sorry about the SLE diagnosis, but I am happy you got some answers! You said the rash was biopsied but what type type of rash was defined in the results? I am interested in the types of rashes others get, because I have a rare form of skin lupus!
i didnt have another biopsy just blood work for the ana. im not too sure if when i get insurance if im going to stay with my doctor (who has been my doctor for 22 years). Hes just so scatter brained. i think he has too many patients or something because hes not as attentive to me as i would like for him to be. i got like 15 minutes with him the other day and when i told him i think i might have vasculitis too he said no you have lupus and then was out of the room.
Tez_20 said:
Hello Kamora,
I know you'd had a biopsy as you told me about it for confirming the Lupus...have they mentioned when you should know the results from this one?
Sorry for getting confused about the biopsies i do apologise.
Well even though you've been with your doctor 22yrs the way your speaking he does'nt sound on the ball much more like a fob you off doctor...my hubby's doctor is the same with to many patients, he was my doctor when we moved here and i sound left when they told me i was wasting NHS money going for my 3yearly smear test and accusing me off never having one, until i told the nurse to phone the department who agreed with me that i was due.
Thank god i managed to get back with my old doctor from the previous area.
Kamora i'd look for another doctor as your sounding not pleased anyway with his treatment and when there's no confidence there it makes you any how.
Love start looking for a new doctor truth is not all doctors are comfortable treating Lupus and that makes him/her a bad fit. I wish you well in your journey God Bless
I just hope for you that your insurance comes through ok...then there's better hopes of another doctor, as your going through so much and need good treatment.
Love Terri xxx
kam0ra said:
i cant untill i get insurance as he is seeing me for free.
Same here, tried it all...for lips and around lips ...Vasilne.. it just makes it so f you touch or rub its protected. Lots at night. It wont take pain away but stops it from rubbing raw... for the other areas to help sleep.. LAst night put thick cream on arms then lightly wrapped with gauze , because my bed was rubbing it raw.... I have tried everything for the itch with no success....Started getting the rash after booking my wedding in Jamaica lol...
Startng Cellcept Monday...anyone have results with cellcept?
Try a mix of antibacterial and steroids on the arms. As for the lips they do pose a problem because we lick them and can ingest the cream, try spraying a little sore throat spray on your lips and slather with petroleum jelly. That might give you enough relief to get a little sleep. God Bless
Best of luck with the cellcept and i really hope it helps you, as your skin sounds so sore.
Please keep we updated also.
Love Terri xxx
faithforlupus said:
Hey...
Same here, tried it all...for lips and around lips ...Vasilne.. it just makes it so f you touch or rub its protected. Lots at night. It wont take pain away but stops it from rubbing raw... for the other areas to help sleep.. LAst night put thick cream on arms then lightly wrapped with gauze , because my bed was rubbing it raw.... I have tried everything for the itch with no success....Started getting the rash after booking my wedding in Jamaica lol...
Startng Cellcept Monday...anyone have results with cellcept?
I'm back on CellCept now. Right now I'm at 1000mg per day with the plan to increase to 3000mg per day in a couple of weeks. I'm not sleeping, either, and my Ambien isn't working anymore.
its going away slowly but surely. im doing alright except my hair is falling out and i LOVE my hair. So im not too thrilled about that. my doctor wants me to take methaltrexate but the side effects is hair loss i cant afford to loose any more hair and i cant get plaqunil cause i cant go to the eye doctor yet so im guessing im gonna have to go pick up the methaltrexate and start taking it. :(
Tez_20 said:
Hello Kamora,
How you feeling in general and hows your skin now?
Lovely to hear off you and thanks for updating we all on how you are.
I'm pleased it's slowly moving away and regarding your hair i just know how you feel...when my first lot came out by my right hear my hair was all down my back like a thick ponytail but the chunk made me paranoid knowing others could see it, so i cut my hair short and my hair was coming out and i skinned it in the end on grade 1 and it's a good job i did bald patches ontop of my head...i've grown it back twice shoulder length and it was pointless when it reached those stages chunks came out more so now i keep it skinned...it suites me and peiople like it but when you lose your hair it's terrible and i really feel for you mate.
Well methotrexate is surposed to be a good drug and regarding your hair alot of the treatments for lupus cause this issue anyway so you won't be gaining anything but if you can start it and later see an opthamologist for the plaquenil also...my dermo sweared on the two working great together on the correct dosgae to suite each individual.
I know this is an old post, I am currently being diagnosed with lupus after the first diagnosis of RA, the rash is allllll over my body, feet, hands are pretty bad. I have been reading lots of posts on here about treatment, my derm has me on antihisitmine which I have been taking for about a week now with no results the rash keeps moving and spreading.....hopefully it will calm down....frustrated!
IF YOUR BUMPS ARE ELEVATED AND RED AND ITCHY ASK FOR A DERMATOLOGIST AND TO HAVE A BIOPSY. I GET TE SAME RASHES AND I WAS SENT TO GET MY BIOPSY THEY TOLD ME THAT IT WAS RELATED TO THE LUPUS AND DIAGNOSIED MY WITH CHRONIC URTICARIA BUT THEY DID MENTION THAT IT COULD BE SOMETHING ELSE YOU WILL HAVE TO FORGIVE BUT I CAN;'T REMEMBER WHAT IT WAS AND THAT IT WOULD REQUIRE ORAL MEDICATION.
Aquafor is a miracle cream. It is sold at any drug store or major chain store. My skin flares are so terrible that I have open sores. This is the only thing I have found that gives me relief (after using hundreds…literally) Beware, it will leave grease spots on clothing.