I read in some other posts on this site that drug-induced lupus can become permanent. This contradicts the medical info I've seen online, which states that drug-induced lupus is definitely temporary andgoes away after the drug is out of the system (which sometimes can take months). Could someone please clear this up?? I have been told my lupus could have been caused by Remicade, so stopped taking it several months ago.
What I know is that Lupus can ameliorate via a diet rich in sugar via fruits, raw & cooked vegetables, lemon juice and celery juice. Grateful to be a part of this group, Marianne
Oh, TG someone else gets all the weird side effects. That is why since being diagnosed when my family doctor asked if I wanted to see a specialist and I said ABSOLUTELY NOT! He said “you probably won’t want to take the medications, though.” Because I am scared to death that one dose might set off more problems. So, for pain I take Vicodin even though it doesn’t always completely get rid of all the headaches and body pain. Thank God I am functioning pretty well at 76 but feel I could be doing better and every day I pray for some normalcy in my life. Lol! Humor helps. I do not think anyone knows exactly what to do about SLE.
I was diagnosed way back in 1988! It was a long process to get to the end, each test building on the results of the one before. One doctor told me "it's all in your head".
I wish I had known that lupus is known as a constellation disease. That is, it does not manifest itself the same in each person. I wish I had known how the symptoms can vary over the course of a week or month, in frequency and severity. Keeping stress levels down is a big help.
Ginger
I was diagnosed in 1999 but had symptoms for many years before. It does take an awful long time to get diagnosed. Through the years my SLE would go through phases of different symptoms that would be managed with prednisone and plaquenil. When I started experiencing a high level of pain, azathioprine was added with Tramadol for breakthrough pain. I was on Benlysta infusions for 4 years where I saw the greatest benefit but I experienced bad infusion side effects that precipitated going off the Benlysta. Fast forward to a year ago when my Rheumatologist began suspecting we were dealing with an additional autoimmune disease. He began testing to rule out MS or a neurological condition in addition to SLE.
The lifestyle changes have been very important in managing this disease. Listen to your body, get lots of rest, prayer is vital.
Hi there.... sending you my biggest hug... about 8 years ago or so it all started with Shingles... but then realised with research i already had symptoms prior since a teenager of SLE ... my grandma had lupus as well. I still have a shingle come back on my lip if i cry, so that is how i learned to listen to my body. The butterfly rash is my biggest warning because the next day i can not function... so realise it is a day on the couch and thinking what have i done last few days to cause it and over do my days. I keep this in mind now knowing i just can't do what i used to do. Lyrica does help with neuro problem's as shingles went in my head, spinal cord, eye, ear mouth etc. I don't like the feeling of lyrica so try not to take it... Endep helps me sleep and is a slow release anti anxiety.... , Palexia helps with bone relief. Lupus is attacking my heart with inflamation so Cordilox 180 helps with that AND DON'T DRINK SPIRIT'S. not a drinker anyway but very aware now as i have 17,000 ectopic heart thuds a day without even drinking. I am so grateful for Mayoclinic as it just makes me feel normal and learn so much from you all each time i have a read. Wishing you all a lovely day from Australia .
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What I know is that Lupus can ameliorate via a diet rich in sugar via fruits, raw & cooked vegetables, lemon juice and celery juice. Grateful to be a part of this group, Marianne
I so agree I’m the same.
Oh, TG someone else gets all the weird side effects. That is why since being diagnosed when my family doctor asked if I wanted to see a specialist and I said ABSOLUTELY NOT! He said “you probably won’t want to take the medications, though.” Because I am scared to death that one dose might set off more problems. So, for pain I take Vicodin even though it doesn’t always completely get rid of all the headaches and body pain. Thank God I am functioning pretty well at 76 but feel I could be doing better and every day I pray for some normalcy in my life. Lol! Humor helps. I do not think anyone knows exactly what to do about SLE.
I'd also like to add these related lupus discussions:
- Anyone with lupus or SLE: How do you manage your condition? https://connect.mayoclinic.org/discussion/sle/
- Just Started Being Treated for Systemic Lupus.....Suggestions? https://connect.mayoclinic.org/discussion/just-started-being-treated-for-systemic-lupus-suggestions/
What tip would you offer someone who has just been diagnosed with lupus? What do you wish you had known?
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2 ReactionsI was diagnosed way back in 1988! It was a long process to get to the end, each test building on the results of the one before. One doctor told me "it's all in your head".
I wish I had known that lupus is known as a constellation disease. That is, it does not manifest itself the same in each person. I wish I had known how the symptoms can vary over the course of a week or month, in frequency and severity. Keeping stress levels down is a big help.
Ginger
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Helpful -
Hug
2 ReactionsI was diagnosed in 1999 but had symptoms for many years before. It does take an awful long time to get diagnosed. Through the years my SLE would go through phases of different symptoms that would be managed with prednisone and plaquenil. When I started experiencing a high level of pain, azathioprine was added with Tramadol for breakthrough pain. I was on Benlysta infusions for 4 years where I saw the greatest benefit but I experienced bad infusion side effects that precipitated going off the Benlysta. Fast forward to a year ago when my Rheumatologist began suspecting we were dealing with an additional autoimmune disease. He began testing to rule out MS or a neurological condition in addition to SLE.
The lifestyle changes have been very important in managing this disease. Listen to your body, get lots of rest, prayer is vital.
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Like -
Helpful -
Hug
2 ReactionsHi there.... sending you my biggest hug... about 8 years ago or so it all started with Shingles... but then realised with research i already had symptoms prior since a teenager of SLE ... my grandma had lupus as well. I still have a shingle come back on my lip if i cry, so that is how i learned to listen to my body. The butterfly rash is my biggest warning because the next day i can not function... so realise it is a day on the couch and thinking what have i done last few days to cause it and over do my days. I keep this in mind now knowing i just can't do what i used to do. Lyrica does help with neuro problem's as shingles went in my head, spinal cord, eye, ear mouth etc. I don't like the feeling of lyrica so try not to take it... Endep helps me sleep and is a slow release anti anxiety.... , Palexia helps with bone relief. Lupus is attacking my heart with inflamation so Cordilox 180 helps with that AND DON'T DRINK SPIRIT'S. not a drinker anyway but very aware now as i have 17,000 ectopic heart thuds a day without even drinking. I am so grateful for Mayoclinic as it just makes me feel normal and learn so much from you all each time i have a read. Wishing you all a lovely day from Australia .
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Like -
Helpful -
Hug
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