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View Full Version : Hello and a question about Drug-Induced Lupus



twilightyoga
02-21-2012, 05:39 PM
Greetings :)

I was diagnosed with Drug-Induced Lupus last year after two years of symptoms ranging from Raynaud's to Sjogren's. I was diagnosed by the anti-histone count. We immediately got me off the drug but after a long time my numbers haven't dropped to where they should be already in my doctor's opinion.

My question is: Has anyone ever heard of someone having "real" lupus AND having the anti-histone show up but a negative ANA?

Thanks in advance for any insight.

steve.b
02-21-2012, 05:57 PM
having a negative ana is not uncommon.
unfortunatelly, many doctors think of the immediate only.
if it is not abnormal now, it must be fixed.
they forget that medication is designed to correct things, (whilst on the medication).
so a normal ana reading does not have to mean you are better, it may mean the medication is doing its job.
there are other reasons for a negative reading also.

by the way.......
welcome to the site.

twilightyoga
02-21-2012, 06:02 PM
having a negative ana is not uncommon.
unfortunatelly, many doctors think of the immediate only.
if it is not abnormal now, it must be fixed.
they forget that medication is designed to correct things, (whilst on the medication).
so a normal ana reading does not have to mean you are better, it may mean the medication is doing its job.
there are other reasons for a negative reading also.

by the way.......
welcome to the site.

Hi and thanks for the welcome. I appreciate the answer about the negative ANA. I'm under the impression that the anti-histone only shows up in drug-induced lupus, not real lupus. Is that true?

tgal
02-21-2012, 08:30 PM
Hi and thanks for the welcome. I appreciate the answer about the negative ANA. I'm under the impression that the anti-histone only shows up in drug-induced lupus, not real lupus. Is that true?

Actually that one is found 80% of SLE patients have it and 90% of Drug Induced. I think I need to clarify something for you.

There is no test for Lupus. There is no "if I have this I have Lupus and if I have this I don't". We really wish it were that easy but it isn't. If you want some information about how SLE is diagnosed I will be happy to help. I will also be happy to help you find information on drug induced lupus

twilightyoga
02-21-2012, 08:47 PM
Actually that one is found 80% of SLE patients have it and 90% of Drug Induced. I think I need to clarify something for you.

There is no test for Lupus. There is no "if I have this I have Lupus and if I have this I don't". We really wish it were that easy but it isn't. If you want some information about how SLE is diagnosed I will be happy to help. I will also be happy to help you find information on drug induced lupus

I would really appreciate the information.

I guess I'm trying to figure out if it's possible that I have actual Lupus and not Drug-Induced Lupus. I can't figure out where the Sjogren's symptoms and all of that come into play either.
I've been diagnosed with Fibromyalgia since I was a teenager already.

The Drug-Induced Lupus came after two years of swollen lymph nodes, increased pain, cold hands etc., etc.

Any thoughts are appreciated. I go to a rheumatologist for this and I got the impression that bloodtests were everything.

tgal
02-21-2012, 08:56 PM
I would really appreciate the information.

I guess I'm trying to figure out if it's possible that I have actual Lupus and not Drug-Induced Lupus. I can't figure out where the Sjogren's symptoms and all of that come into play either.
I've been diagnosed with Fibromyalgia since I was a teenager already.

The Drug-Induced Lupus came after two years of swollen lymph nodes, increased pain, cold hands etc., etc.

Any thoughts are appreciated. I go to a rheumatologist for this and I got the impression that bloodtests were everything.

The majority of us with Lupus have what we call "overlapping diseases". Most started off with Fibro and the sjogrens is simply another AI disease. For some reason once you get one AI disease they seem to mount up. I myself have a long list of AI diseases and they all started with "Fibro" and then Lupus. The cold hands, do they ever change colors or blister? That could be another AI disease.

I just posted this in another thread but here is the criteria for diagnosing lupus (http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis)
Maybe that will help a bit. I will try to find some more information on the Drug Induced kind tomorrow (if brain fog permits). From what I have gathered, if it is drug induced, it ends rather quickly after the drug is discontinued.

twilightyoga
02-21-2012, 09:08 PM
The majority of us with Lupus have what we call "overlapping diseases". Most started off with Fibro and the sjogrens is simply another AI disease. For some reason once you get one AI disease they seem to mount up. I myself have a long list of AI diseases and they all started with "Fibro" and then Lupus. The cold hands, do they ever change colors or blister? That could be another AI disease.

I just posted this in another thread but here is the criteria for diagnosing lupus (http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis)
Maybe that will help a bit. I will try to find some more information on the Drug Induced kind tomorrow (if brain fog permits). From what I have gathered, if it is drug induced, it ends rather quickly after the drug is discontinued.

You're extremely kind. Thank you so much! And the link you provided was interesting as well.

Shine
02-25-2012, 04:52 PM
Hey twilight...

I myself am in a bit of a conundrum regarding drug induced lupus. Not sure if mine is nor not and I'm trying to weight up when symptoms started and other related conditions etc.

I take carbemazepine. It has been known to rarely, in less than 0.2% of users, cause a "lupus like syndrome." Even then, it mainly affects people between the age of 50 and 70. BUT! You never know.

I don't know whether to come off it or not! Docs basically say the decision is up to me. Hmm.