Hello Zipperhead,
What did your Dermo say your rash was...as Kamora does'nt know yet what hers is and that's why she added pic's.
Love Terri xxx
Tez- I have DLE and my dermo thinks that I have SLE but, I cannot get a true diagnosis on the SLE cuz the blood never comes back positive. However, for about 25yrs they have been testing me for SLE and blood always comes back undeterminable. Now because I am a walking issue none of the Rheumatologist want to even try to figure it out! I always hear I yes I know about those conditions & that would be great except I can tell by the look on their face that they have nooooo clue..... My Dermo though is the one who actually put me on Cellcept and is treating me both for DLE and SLE. Long story short I have to go out of state again to get diagnosed cuz I have had no luck with docs here since 2007.
Hope this helps,
Zipperhead
(((((HUGS TO ALL)))))
Hello Zipperhead,
Thanks for replying back...your Dermo alone should know what's wrong with you, if bloods don't pick up your skin condition which mine did with psoraisis which mimic's other skin condition terrible then doing a biopsy would have found out alone and usually when you have DLE you have SLE anyway because i have DLE also.
Your blood work does'nt always show positive as Lupus fluctuates the blood and can show false readings anyway, you dermo did what mine did took it in his own hands to treat you for both, my Rheumo would'nt prescribe meds so my dermo took it in his own hands to do it and then refered me to a lovely rheumo who i'm seeing now...just goes to show.
If this is the difficulty your in then i'd look for other specialist's and why as'nt he put you on plaquenil as it's excellent for the skin.
Hugs & Kisses Terri xxx
so i went to the doctor today (had to reschudule from the 3rd) and my ana was positive so it is SLE doc told me to stop working completely. but im ok with SLE its not a death sentance and he said it looks to be a mild case as long as i get treatment i will be alright
Wow, I'm sorry for the confirmation of SLE but I'm also relieved your doctor believes and is willing to commit. This means treatment for you and less misery from the symptoms. Now to get you in order and on the mend. God bless!
Hugs'
Kimberly
Hello Kamora,
Like kimberly we don't wish for SLE on anyone but i'm also pleased you've finally got a diagnosis which you've need and hoepfully now you'll get treated and they'll find out what's causing this severe rash...are you being refered to a Dermo, as it been mentioned?
How are you feeling otherwise and is it still carming down as you mentioned previous.
Love Terri xxx
Be careful using the hydrocortisone 2.5% cream on your face. My doctor says it is not for the face and that I can thin the skin. She gave me desonide cream, 0.05% for my face and it seems to work even better. The rash on my face is rather mild compared to my chest, upper arms and back. They have yet to find an internal drug to treat my lupus and I have been doctoring for a year and a half. Good luck to you and God Bless.
Also some of the meds given to me for the lupus gave me an itchy blistery rash on my hands and feet. (very painful) It is an allergic reaction to the meds. I cannot take placquenil or cellcept. Check with your doctor if this happens.
Hello allman,
I'm treated by an excellent Dermo and hydrocortisone cream can be used for the face but they like it applyed in small amounts and not for long time usage because it's a steriod it's an aging cream to the skin and when you've used so much to which your doctor's told you...you have to have 6mths break before whatever cream you apply next.
I've had this cream in the past and because my skin got so bad with my DLE the steriod creams started burning my skin.
Love Terri xxx
allman304 said:
Be careful using the hydrocortisone 2.5% cream on your face. My doctor says it is not for the face and that I can thin the skin. She gave me desonide cream, 0.05% for my face and it seems to work even better. The rash on my face is rather mild compared to my chest, upper arms and back. They have yet to find an internal drug to treat my lupus and I have been doctoring for a year and a half. Good luck to you and God Bless.
well im doing good joints ache a bit but im ok. the rash is the lupus it was biopsed. but its going away i think its because i dont go out in the sun and when i do i use sunscreen and protective clothing because the creams were not working.
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!
Glad you are doing a little better!
Deenie
Bless your heart Kam! On with the treatment and glad to know you will be feeling better!!!
Love and hugs,
Lori
kam0ra said:
so i went to the doctor today (had to reschudule from the 3rd) and my ana was positive so it is SLE doc told me to stop working completely. but im ok with SLE its not a death sentance and he said it looks to be a mild case as long as i get treatment i will be alright
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!
Glad you are doing a little better!
Deenie
Hi , i've been using cortizone.10 intensive healing lotion( eczema and dry and itchy skin) with restora, for about 2-3 months and it does help me . My doctor asked me who told me about it and , my reply was my grand kids have eczema and one nite my face was itching so bad i just decided to try it and for 2days there was no itching until the 3rd day . So now i make it my business to buy 2 things of cortizone .10 for eczema with Restora -one for them and one for me . But i don't use it every nite or day (only as needed)!!!! well hope this helps someone .... Beverly L.
allman304 said:
Be careful using the hydrocortisone 2.5% cream on your face. My doctor says it is not for the face and that I can thin the skin. She gave me desonide cream, 0.05% for my face and it seems to work even better. The rash on my face is rather mild compared to my chest, upper arms and back. They have yet to find an internal drug to treat my lupus and I have been doctoring for a year and a half. Good luck to you and God Bless.
That''s what my doctors said also , that the rash was from LUPUS !!!! i really just go with the flow of things now ( Sometimes the doctors don't know what to say - because LUPUS is something that they really don't have alot of answers for ) LOL, LOL, LOL!!! seems crazie to me..... Beverly L.
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!
Glad you are doing a little better!
Deenie
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!
Glad you are doing a little better!
Deenie
Hello Kamora,
Sorry to hear your joints are aching abit and that's one pain issue but i'm really pleased they've done a biopsy for you to find out because it did look really sore on the picture's you added.
Well at least your covering yourself up now when you do have to go exposed to the sun.
I really hope your not to bad today.
Love Terri xxx
kam0ra said:
well im doing good joints ache a bit but im ok. the rash is the lupus it was biopsed. but its going away i think its because i dont go out in the sun and when i do i use sunscreen and protective clothing because the creams were not working.
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!
Glad you are doing a little better!
Deenie
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?
Hugs Terri xxx
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!
Glad you are doing a little better!
Deenie