DILE Drug induced Lupus Erythematosis
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I just read thru this and found alot of interesting things ... I have been on several of the meds mentioned before my now withdrawn diagnosis... tetracycline is the one jumped out at me... I was bitten by a cat and the ER doctor put me on it ... that was a Sunday morning ... by Tuesday I had swollen joints all over ,itched and broke out in a rash... I stopped it and went to a doctor who said it was just an allergic reaction put me on pred and penicillin and sent me on my way...after a couple weeks rash was clear but itched horribly when ever in the sun and my hair started falling out... didn't have a regular doctor at this point in time and when I went back the one I saw said I was having an allergic reaction to something ... probably grass since it was hay cutting time..here swallow benadryl...and sent me on my way
This was about 2 years before my steady ongoing problems began... during that time I had several flares of itching , body rash and hairloss... but didn't go back just took bendryl to relieve itch...I have never had a butterfly rash but scaley patches over body especially chest and stomach
This was about 2 years before my steady ongoing problems began... during that time I had several flares of itching , body rash and hairloss... but didn't go back just took bendryl to relieve itch...I have never had a butterfly rash but scaley patches over body especially chest and stomach
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I'm on diltiazem and cimetidine. But diclofenac? The rhuemy put me ON it.
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It is listed in Lily's post on the first page.
Hi Brenda,
It is on that Post Grad site referred to as being one of the possible drugs that could cause a drug induced lupus (althought its not in the list of the ones most likely to cause a problem) . The fact its on that list doesnt mean it will do that with everyone and we have discussed this in the past:
http://www.uklupus.co.uk/facts.html
If you are on it and you havent had any problems then I wouldnt be concerned. There are lots of NSAIDS available to us and if one doesnt suit then there are other choices.
The very nature of drug induced lupus means that once the drug is withdrawn then they symptoms should go and the ANA return to normal. Its very different to someone who already has lupus and has trouble tolerating a certain med - like me with Ibuprofen for example. If I take it it makes my symptoms worse, but I have Lupus anyway, so its not classed as a drug induced lupus.
The reason I posted this thread was that many people come in here with a few symptoms and think they have Lupus, their docs have failed to realise that it may actually be a drug induced lupus, rather than the 'real thing' and for them the fix is easy. Withdraw the drug.
love
Lily
It is on that Post Grad site referred to as being one of the possible drugs that could cause a drug induced lupus (althought its not in the list of the ones most likely to cause a problem) . The fact its on that list doesnt mean it will do that with everyone and we have discussed this in the past:
http://www.uklupus.co.uk/facts.html
If you are on it and you havent had any problems then I wouldnt be concerned. There are lots of NSAIDS available to us and if one doesnt suit then there are other choices.
The very nature of drug induced lupus means that once the drug is withdrawn then they symptoms should go and the ANA return to normal. Its very different to someone who already has lupus and has trouble tolerating a certain med - like me with Ibuprofen for example. If I take it it makes my symptoms worse, but I have Lupus anyway, so its not classed as a drug induced lupus.
The reason I posted this thread was that many people come in here with a few symptoms and think they have Lupus, their docs have failed to realise that it may actually be a drug induced lupus, rather than the 'real thing' and for them the fix is easy. Withdraw the drug.
love
Lily
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I'm concened about the diltiazem. I'VE been on it for years. We've tried alternates, but nothing has worked. The rheumy knows I take it for PH, so surely he would have mentioned it if he thought it could be DILE instead of SLE, don't you think?
Hi Brenda,
This article outlines the major differences in SLE and drug induced lupus erythematosis (DILE). http://www.emedicine.com/DERM/topic107.htm
It's hard to pick it but I am sure your doctor would have considered it as a possibility and investigated thoroughly whilst diagnosing you.
Either way, if you need that drug what is the alternative really???.................same with things like Atenenol...............people with heart conditions would probably die without it, so not taking it is not an option
They treat DILE the same way they treat SLE if the patient cannot be taken off the drug causing it.
Of particular interest to me in the article is the fact they mention birth control pills!! but the thing that must be remembered here is that when they talk about DILE they mean in a patient who had NO signs of lupus prior to taking the drug and its obvious the drug brought it on. It's not the same as someone who had some inkling of problems prior to taking it anyway and this maybe just brought it out of hiding.
love
Lily
This article outlines the major differences in SLE and drug induced lupus erythematosis (DILE). http://www.emedicine.com/DERM/topic107.htm
It's hard to pick it but I am sure your doctor would have considered it as a possibility and investigated thoroughly whilst diagnosing you.
Either way, if you need that drug what is the alternative really???.................same with things like Atenenol...............people with heart conditions would probably die without it, so not taking it is not an option
They treat DILE the same way they treat SLE if the patient cannot be taken off the drug causing it. Of particular interest to me in the article is the fact they mention birth control pills!! but the thing that must be remembered here is that when they talk about DILE they mean in a patient who had NO signs of lupus prior to taking the drug and its obvious the drug brought it on. It's not the same as someone who had some inkling of problems prior to taking it anyway and this maybe just brought it out of hiding.
love
Lily
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Thank you so much, Lily, for taking the time to explain all this. I do have to take the diltiazem (cardizem) for the PH or... well... it's not good. I can't take beta blockers or ace inhibitors because I've had severe asthmatic reactions. You're right, if I have to take it I have to take it. I was taking it for a few years before being diagnosed, but we BELIEVE some hospitalizations years prior to starting it were flares. You're right. Call it a zebra or a horse, it needs fed the same way. THANKS!
Forgive me if I'm being a little stupid with what I'm about to ask.... but on the list of drugs that may cause DILE it mentions "hydroxychloroquine" and "ibuprofen" - BUT aren't these drugs used to actually treat Lupus?
Also, a very good few years ago (maybe 5) I was given some super strength antibiotics to treat what the Dr had wrongly diagnosed as "Prostatitis". I took these for about a week and became very ill until another Dr noticed the grave mistake, after which I stopped them. Alas can't remember the name of the antibiotics. But, my question is - is a 1 week course enough time to contract something like SLE or DILE?
Also, a very good few years ago (maybe 5) I was given some super strength antibiotics to treat what the Dr had wrongly diagnosed as "Prostatitis". I took these for about a week and became very ill until another Dr noticed the grave mistake, after which I stopped them. Alas can't remember the name of the antibiotics. But, my question is - is a 1 week course enough time to contract something like SLE or DILE?
Hi Surferboy,
The list of possible side effects of drugs is made as follows: A patient gets a drug prescribed and while taking it gets a symptom and goes to the doctor. If the doctor thinks it might be a side effect (read MIGHT BE, not definately proved so to be), they send a form through to a central registrations center and it gets sent on to the manufacturer, and may eventually get put on a list of possible side effects. If you search hard enough you can find out exactly how frequently a side effect occurs. For example many of the side effects occur less than one in a million. And remember these are not proven side effects but possibly side effects, so in all reality, most probably was not a side effect but a random coincidence.
Especially with DILE, there is a very good probalilty that the reason the person was started on plaquenil in the first place was suspected CTD. That they then get DILE is more likely mislabeling - it should have been called SLE, and the plaquenil did not cause anything except improving the patient's life.
You second paragraph does not make sense. Why is prescribing an antibiotic for an infection a grave mistake? It is logical. Why are you upset about it and what relevence do you think it has to what now?
You cannot contract SLE. You can't get it from a drug. With DILE if you stop the drug the disease goes away with time. DILE also happens straight away while taking the offending med, not 5 years later. Unless you have been lying to your doctor about a medication you are currently taking, you do not have DILE.
Hydroxychloroquinine is the most important useful safe medication we currently have for SLE and Discoid.
X C X
The list of possible side effects of drugs is made as follows: A patient gets a drug prescribed and while taking it gets a symptom and goes to the doctor. If the doctor thinks it might be a side effect (read MIGHT BE, not definately proved so to be), they send a form through to a central registrations center and it gets sent on to the manufacturer, and may eventually get put on a list of possible side effects. If you search hard enough you can find out exactly how frequently a side effect occurs. For example many of the side effects occur less than one in a million. And remember these are not proven side effects but possibly side effects, so in all reality, most probably was not a side effect but a random coincidence.
Especially with DILE, there is a very good probalilty that the reason the person was started on plaquenil in the first place was suspected CTD. That they then get DILE is more likely mislabeling - it should have been called SLE, and the plaquenil did not cause anything except improving the patient's life.
You second paragraph does not make sense. Why is prescribing an antibiotic for an infection a grave mistake? It is logical. Why are you upset about it and what relevence do you think it has to what now?
You cannot contract SLE. You can't get it from a drug. With DILE if you stop the drug the disease goes away with time. DILE also happens straight away while taking the offending med, not 5 years later. Unless you have been lying to your doctor about a medication you are currently taking, you do not have DILE.
Hydroxychloroquinine is the most important useful safe medication we currently have for SLE and Discoid.
X C X
Hi Cath, sorry for the confusion in my paragraph.
What I meant to say was that the Dr prescribed a drug which he most definitely should not have in light of what the symptoms were in my illness. After taking this medication I got a lot worse and so went to the Dr's surgery again, where I saw another Dr. This new Dr was mystified and horrified at the previous Dr's ignorance and at the fact that he had prescribed the drugs he did.
Hope that makes sense
As for the antibiotics comment - I was under the impression (from what my GP said) that Lupus sufferers would have an adverse effect to antibiotics.
If I've been misinformed please tell me. Right now I am so worried about catching any kind of infection - cold, cough, flu etc
What I meant to say was that the Dr prescribed a drug which he most definitely should not have in light of what the symptoms were in my illness. After taking this medication I got a lot worse and so went to the Dr's surgery again, where I saw another Dr. This new Dr was mystified and horrified at the previous Dr's ignorance and at the fact that he had prescribed the drugs he did.
Hope that makes sense
As for the antibiotics comment - I was under the impression (from what my GP said) that Lupus sufferers would have an adverse effect to antibiotics.
If I've been misinformed please tell me. Right now I am so worried about catching any kind of infection - cold, cough, flu etc
Hello Surferboy,
No, antibiotics are very important to lupus patients just as they are to others. Probably more important as having an infection can bring on at best a mini flare, at worst a major one.
The only difference between an SLE patient and anyone else is that they may need stronger antibiotics and over a longer time than normal to get rid of the infection.
As you are not on immunosuppressants for the moment you don't need to worry about getting an infection any more than anyone else. Obviously, you musn't let an infection go if you do have one but I somehow can't see you ignoring anything so I don't think that will happen :wink2:
Katharine
No, antibiotics are very important to lupus patients just as they are to others. Probably more important as having an infection can bring on at best a mini flare, at worst a major one.
The only difference between an SLE patient and anyone else is that they may need stronger antibiotics and over a longer time than normal to get rid of the infection.
As you are not on immunosuppressants for the moment you don't need to worry about getting an infection any more than anyone else. Obviously, you musn't let an infection go if you do have one but I somehow can't see you ignoring anything so I don't think that will happen :wink2:
Katharine
Phew! At least once a year I get a very bad chest infection... guaranteed And this is when the Dr would prescribe me mild antibiotics. I react very badly to anything too strong
I was a tad worried as to what would happen when I did get my annual chest infection
And this is when the Dr would prescribe me mild antibiotics. I react very badly to anything too strong I was a tad worried as to what would happen when I did get my annual chest infection
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Its best to avoid sulfa based anti-biotics as these are known to cause flare ups in some people with SLE. Your doctor should be able to advise which ones are sulfa based or not
Cheers
Joan:rose:
Cheers
Joan:rose:
Dont want to beat a dead horse but figured this was as good a place as any to post this. I have been on Lotrel for AGES for my high blood pressure. I just noticed after reading through this post, then doing a search for Lotrel and DILE that there is a warning about taking Lotrel if you have Lupus. I am wondering if my long term use, a LOT of unprotected sun exposure last summer, then taking handfuls of Advil in December along with an antibiotic for Sinusitus has led to DILE. I think I will ask my PCP to put me on something else - although with all the weight I have lost in the last four months and my steady use of my Respirate - bio-feedback thing for reducing blood pressure - my BP is doing quite well so I may be able to go off BP meds completely (fingers crossed).
Will also discuss with my Rheumy on Friday. Should be an interesting discussion. Will keep you all posted.
Cheers,
dave
Will also discuss with my Rheumy on Friday. Should be an interesting discussion. Will keep you all posted.
Cheers,
dave
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Neggram
Lily[/QUOTE]
I don't think Neggram or generic neggram can cause lupus.
loveLily;367806 said:
Lily[/QUOTE]
I don't think Neggram or generic neggram can cause lupus.
Oh DEAR! I take Hydrochlorothiazide for BP. However, I know that my derma looked at that, but realized my symptoms started BEFORE starting HTZ, but it does say it can cause flares. now I'm really confused.
She would have taken me off, or recommended seeing my GP if she thought that was causing problems...right?
I'll put my faith in her, I see her August 2nd, and am supposed to track any sx's until then....This is a mess, however, I go for bloodwork w/ GP in a couple weeks, wonder if I can get her to check ANA again? Do you think that is a good idea, since i just had it checked a couple of weeks ago? could it have changed?
thanks so much for your help! and the link, it's very informative.
now I'm really confused.She would have taken me off, or recommended seeing my GP if she thought that was causing problems...right?
I'll put my faith in her, I see her August 2nd, and am supposed to track any sx's until then....This is a mess, however, I go for bloodwork w/ GP in a couple weeks, wonder if I can get her to check ANA again? Do you think that is a good idea, since i just had it checked a couple of weeks ago? could it have changed?
thanks so much for your help! and the link, it's very informative.
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