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@johnbishop

Hello @whyus and @regeanna, I’m also sorry to hear of your diagnosis. I’m hoping others will join in and share information that may be helpful. I don’t have lupus but do have other autoimmune diseases and understand the uncertainty you may feel. Mayo Clinic does have some information that may be helpful – http://mayocl.in/2qJqF78.

There is also another discussion on Tumid Lupus with SLE Symptoms that you may want to join and ask your questions – http://mayocl.in/2qJpF2Q

In the meantime, I’m tagging others who have mentioned or are familiar with lupus @kanaazpereira @paulamiddleton @WendyAnne @oohlalalita @petersen73 @dogmamat @salena54 @dmkmom04 @helloshelly7969 @kdubois @rayhastings @wmoser2613 @buttons @aimeenc, do you have any insight that you can share with @whyus and @regeanna?

Hoping for answers for you soon.

John

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Replies to "Hello @whyus and @regeanna, I'm also sorry to hear of your diagnosis. I'm hoping others will..."

@whyus, I suffered from drug-induced lupus versus SLE, but one thing was for sure… I was incredibly tired but had a difficult time sleeping due to pain. I hope and pray you find relief soon.

Hi. I just wanted to share some information we found out about my sister. She had drug-induced lupus from Inderal. She stopped taking it but was not aware that it caused the drug-induced lupus and a year or so later went back on it or an equivalent beta blocker. She developed symptoms again and I did research and found out the connection and contacted the company. Their response was no one knows how the second exposure 2 one of them will workout. This was many years ago and the second exposure did go into full lupus. I guess I'm just wanting to warn you to stay away from similar drugs that gave you the drug-induced lupus. they may have more knowledge now than they did back then but it is possible to go into full lupus.

Hello @virginiasenior and welcome to Mayo Connect. I see that you are a relatively new member.

I appreciate your post regarding your sister's diagnosis. One of the great value from participating in Connect is that we all learn from each other. The sharing of your sister's story might certainly help someone else.

I hope your sister is managing this difficult disorder.

Teresa

Thank you. My sister is 85 and did pretty good except for the joint pains and fatigue until she had a stroke a few years ago which seems as though the lupus has worsened. Her days and nightsv are switched. She stays up late and doesn't get up or at least going until 2 or 3 in the afternoon. She also has Hashimotos disease and has trouble keeping her thyroid regulated. But we are thankful that it was a slow progression for her.

@virginiasenior

Your sister is so fortunate to have you by her side, both physically and emotionally. I can tell by your words that you are really there for her and care about her.

Yes, any disease that slowly progresses is a good one. I have a slow growing form of cancer, neuroendocrine tumors. I've had three surgeries, the first in 2003 and the last in 2016. It is a blessing, if you will, to not have to face the large crises on a regular basis.

I look forward to hearing from you again, Virginia.

Teresa

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