Diagnosed with Lupus One Month Ago

By CommunityMemberc2fb64

Last Updated:

1 min read

I broke out with a skin rash on April 22. I couldn't keep anything down at the time and still can't. I feel itchy all night. That's when they decided to test me for lupus. I hate it, it's awful. Especially since I have a hard time eating and keeping it down.

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Racquel H. Dozier Member

CommunityMemberc2fb64July I’m sorry you are dealing with this. The itching can be relentless.what have the doctors said about it all? Have they gotten to meet with you and discuss the symptoms and your lab results? ~Racquel~ <a href='https://lupus.net' target='_blank'>lupus.net</a> team meeting
CommunityMember6964200 Member

Hi I know all about the terrible itching feeling and I have the most shocking of rashes on one cheek of my bottom which covers the whole area the rash is painful and very very sore it's hard to sit for to long .Dr gave me cream but didn't touch it seems to be spreading down my.leg in a thick red line ....Dr said I had diabetes.put me on medication which made me so very ill .I stopped taking the tablets and also stopped taking another tablet sertraline they had put me on. My blood sugars are between 5.6 and 6.1 ..that's not taking tablets ...the tablets increased my blood sugars so much which made me feel so ill.the nurse said I did the right thing coming of them.. I still think it's lupus I've got .ime almost 98 % positive I have .with my aching joints tiredness and lots more ailments.i.just wish I could get a proper diagnosis x 
1. Doreen H Community Admin
 
 <inline-mention username="CommunityMember6964200" user-id="6964200"/>, We appreciate you sharing your story. I'm sorry to hear how difficult it has been for you. Diagnosing lupus can certainly be challenging since its symptoms mimic so many other diseases. Symptoms often come and go and can be quite different from person to person. On average, it takes 6 years for someone with lupus to be accurately diagnosed. Many in this community have found a rheumatologist helpful in the diagnostic/treatment process. I thought I'd share this article that may provide some helpful information: <a href='https://lupus.net/tests' target='_blank'>https://lupus.net/tests</a>. In addition, I thought I'd include this link that may provide some helpful insight on lupus symptoms: <a href='https://lupus.net/symptoms' target='_blank'>https://lupus.net/symptoms</a> Wishing you all the best, Doreen (Team Member)
adrie72 Member

I'm 51 and I was diagnosed in 1989. I was 16. The butterfly rash is what diagnosed lupus. It turned out in the end I have SLE in the nervous system. Had hallucinations, was on 1000mg of prednisone for 3 months in hospital. I had a mild stroke in 2010. And now I have chronic low platelets for the past 2 years, that I need to go for a bone marrow test at the end of the month. I m at high risk for Multiple Myaloma. Rheumatologist says, it's common to have this issue with lupus, have to keep monitoring. Because of possible future blood cancers. Prednisone was my life savior. Wish I could go back on it, but they want me off of it. So hang in there. God Bless Adrienne 
1. Erin Rush Community Admin
 
 Thank you for joining this conversation, <inline-mention username="adrie72" user-id="8665543"/>! I am so sorry you have dealt with some significant issues since your diagnosis. I hope your bone marrow test results are clean and I am glad your doctors on top of things as far as monitoring for blood issues. I am sorry you aren't able to keep taking prednisone; I know it can often feel like a miracle drug when you are dealing with inflammation and pain! Thank you again for sharing and again, I hope your test results look great! Best, Erin, <a href='https://lupus.net' target='_blank'>Lupus.net</a> Team Member. 
2. adrie72 Member
 
 Thank you Erin🙏