Been awhile since I posted so blessings to you all! I'm posting this in the hopes someone has some knowledge of this topic or knows someone who could answer some questions in more depth than I can find online.
As some of you know, I have a bit of a weird storyline that led to my diagnosis of Lupus. One of which is my blood work and having a not-so-common sub type of the ANAs called Anti Histone (Antibody). Generally I am ANA positive. But, at the time of my Lupus diagnosis my Rheumy ran an additional test to see if it was DIL (drug induced Lupus) as I had been on biologics to treat another autoimmune condition of mine - Spondyloarthropathy.
Well, after almost 4 years of discontinuing the drug that caused the Anti Histone antibody to show up. It’s still there and going up (it should be 0 in most people, and rarely positive - supposedly! - in SLE)!!!!
The increases are small but steady.
As it is not common to test positive for this and NOT have drug induced Lupus, which is a Lupus-like syndrome that clears up when the offending drug is discontinued, does anyone know why my number would be increasing?
Do you know anyone who knows anyone that knows about this antibody?
My doctor is basically like “Yup, it’s up.” When I ask if that is a way to objectively monitor disease activity, he side steps the questions.
I haven’t met a Rheumy yet who knows much about positive AHA in SLE (vs. DIL). Simply, when a drug triggers “latent” Lupus vs. you get something like lupus but it goes away. I’m the former.
Sorry for the long post, just hitting a lot of dead ends and am trying to figure out if anyone is doing research on this and what it means in the long run.
Love to you all!
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katidid
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Hi katidid, sorry to read of this, and I am not the nero person here but simple idea one. Histones are the protein complexes that are together with your DNA at the nuclei of the cells in our bodies. married together so to speak Histones and your DNA make up your chromosomes.With SLE, antibodies directed at the histones are very common, Histones presence causes a diffuse pattern ANA. And as you may know, they also appear in other systemic autoimmune diseases, and used to diagnose the drug induced lupus. Have you tested positive for Chromatin antibodies? If your number is increasing , could it be still a reaction in your immune system with having other autoimmune conditions??? Any number of things can set overactivity in people like many of us with Lupus. I would seek second opinions from another specialist if that is possible. Not all doctors are the same, just like we are all not the same. I hope you find the answers you are trying to, and you are on the right path seeking here. sorry I cant help more, but I will pray for you on your journey, and send peace and blessings to you. thestormxxx
My understanding, I think from Daniel Wallace's comprehensive book on lupus (I'm not absolutely sure of the source, but it was a well recognized authority), is that a large percentage of people with lupus have positive anti-histone antibodies. I had a similar problem with a rheumatologist who insisted that these were only linked to drug induced lupus, in spite of my having been given the drug twenty five years earlier. I believed the book and changed rheumatologists, but it was very upsetting and confusing at the time. Good luck with everything. I'm sorry you had to experience that, too.
It's really interesting that you bring this up. I have actually met with Dr. Wallace twice. As one of the leading authors and speakers on Lupus, I expected he would notice the trend and impart some knowledge about it. He did the opposite. Dismissed it as well as 5 years of medical history, including that of other Rheumatologists. My husband, who was at this appointments with me, was as shocked and dismayed as I was. Dr. Wallace is very high profile and takes a lot of pride - and money (you should see the letter all patients got from his office requiring a $500 a year "admin fee" in addition to payments for services and asking for a MINIMUM donation $1500 if you want to write of your medical expenses with him**!!!) - from the Lupus community. His office is extremely fancy and he runs an infusion practice the likes of which nobody has seen. He is terrible at clinical exams, he ignores medical histories and makes errors that are dangerous. Unless your Kim Kardashian who he saw as a patient and provided wonderful care to ... on camera. I have the same condition as her - PsA - and was barely given the time of day. I spent hundreds and hundreds of dollars to walk away feeling like a piece of garbage. When I passed on the Dx he gave me to my other physicians who are top ranked and also extremely experienced they were beyond upset. I'm still considering writing the AMA and reporting his financial practices as well as his lack of standard when is comes to clinical assessment.
** If you live in the US, it's illegal for a doctor to give tax advice. He's incorrect and the letter was completely misleading.
I could barely afford to see him (this year it was an out of pocket $500 non-reimbursable charge to even get an appointment ...). Imagine what this does to patients who don't have that money on hand. Terrible.
Wanted to respond separately from the Dr. Wallace experience. Like you, the drug that triggered the AHA was discontinued 4 years ago. Based on its half life, the drug was completely out of my system 3.5 years ago.
But the antibody is still present (and going up). I did do a little extra research and it confirmed that this antibody is specific to Lupus. As far as I can tell, it is not correlated with any other autoimmune diseases. And, like you said, more people than doctors will acknowledge with SLE and not DIL have it.
Lupus.org has a brief article on it from a professor that clearly says that when the offending drug is stopped n(and ut of your system) that the antibody goes away. This is actually used as proof of DIL diagnosis. If it stays, especially years later, then it’s not DIL.
But, as you said clinicians just seem to be stuck on DIL. I track it on my own, until yesterday when my Rheumatologist called and refused to provide the current and historical values. He said not to focus on it. Since it’s a subtype of ANA again still so surprised that he’s not keeping an eye on it.
Luckily I can get the records via the lab b/c it’s affiliated with a large medical system.
I think it’s time to change providers to one that’s more current or more knowledgable about the biochem of antibodies. It’s exhausting having to provide him with the research.
Thanks for sharing your story with me. Glad to know I’m not the only one out there!
I can't help you with the technical side of this, but can say I have confirmed spondyloarthropathy and Sjögrens, along with suspected seronegative RA and some other ai conditions, no Lupus. My ANA has been increasingly positive. Years ago when I first registered pos ANA, it was thought to be DIL from Remicade. 17 years later my fairly good rheumatologist thinks it is just an indication of active autoimmune disease. Best I can do, sorry. Hope you get some answers.
Interesting - I have Spondyloarthopathy as well (psoriatic arthritis, enthesitis and Spondylitis (not Ankylosing). I also took Remicade, which was the drug that caused the Antihistone Antibody to turn positive (I already had a positive ANA with speckled pattern prior to taking any TNF inhibitors). Obviously we thought for the first half year after the Remicade was discontinued that the + AHA result was DIL. But 3.5 years later, nope. Odd thing is that it's the only number that is going higher. Everything else with treatment and lifestyle changes has stabilized.
It has been a while, not sure about the AHA, will check. Yes, I have spondlylitis not ankylosing, possible PSA as per patches of psoriasis, enthesitis. When did you have Remicade, mine was for a half year in 2003. It is weird how all these come together. My rheumatologist is a big believer in overlap. Sjõgrens neuropathy is my most active condition now. Sorry I see yours was 3.5 years ago.
Hi Katidid! Biologics particularly TNF alpha inhibitors like remicade/infliximab and even Humira have been shown to cause long lasting effects on the immune system long after last treatment. We are talking years not weeks or months.
Some people with DIL on short acting meds eg hydralazine which is a huge offender will resolve after stopping the drug. Biologics have effects far beyond their immediate effect to dampen the immune system. They effect gene expression and many other factors related to the immune system.
Anti-histone antibodies are pretty indicative of DIL. You may just have to ride it out. I’m unsure of how this is treated since your immune system is already compromised. They should dissipate after your immune system reconstitutes itself. As someone else suggested, a second opinion might be useful.
Very interesting about the long term effects. I was on Remicade, then Enbrel, then Humira. Had to stop biologics in 2004, because of MGUS. My neurologist thinks the bad neuropathy I have was caused by those long ago biologics!
Like wonder drugs when they first came out. Pushed through approval processes in record time due to effectiveness. We are only now seeing the long term effects. Some people do fine.
My mom took remicade and says she wouldn’t trade the years of relief she gained for anything in the world. She’s now dealing with fallout - lots of viral nerve infections/neuritis. Different strokes for different folks.
I hope your MGUS resolves over time. I don’t believe the effects are lifelong but the verdict is still out....
Mind if I ask you what your mother's experience with her neuritis is? Is she on the side of the spectrum where it's causing loss of sensation or the other end which is increased sensitivity (or pain). Is it mostly peripheral or can she feel it all over?
She has vestibular neuritis caused by viral infection of her nerves due to immunocompromised state from the remicade. She is only now exhibiting possible neuropathy symptoms with esophageal spasms.
I have never taken a biologic but I do have significant neuropathy - dysautonomia, peripheral, small fiber with GI, cardiac, sensory and sudomotor manifestations. Interestingly my mom has none of these but seems to only be developing them now. I think since I have lupus, it set the neuropathy off earlier than her.
Very interesting, thanks for posting! I have chronic pain now and it is also classified as neuropathy and is managed by a Neurologist. Unlike most AI patients I know and am close to, my pain is 24/7. It only goes up, never away. I was never like this until I took those exact same TNF inhibitors. Now I have been diagnosed with Dysautonomia, which is highly correlated with nerve pain and unresolvable pain. Brain and body are just short circuiting.
Makes me wonder if this is a bigger issue and might explain rapid onset of things like neuropathy and other nervous system disorders.
It also scares me b/c these are prescribed so often!
I’d love to chat with you more about your experiences and share mine if you’d be ok with that.
I'm familiar with the long tail, but have struggled to find consolidated evidence of what % of people who test + for AHA and have Lupus-like symptoms continue to test positive for years. Some of that data is also challenged by the % of SLE cases that have the antibody sans taking any medication that is known to cause DIL. Also, it doesn't explain the increase. As researchers have noted, it goes down and then away. Like you said, can take a long time. But the trend is towards <1. An increasing value is odd.
All this being said, when I went to my current Rheumy (the prior one had given me Enbrel, Humira and Remicade) he said I was a case of drug-triggered Lupus. Meaning, DIL is "Lupus-like" whereas my case was that my body was already harboring Lupus and the drugs just "switched it on". Since then we avoid anything and everything that could make it worse.
That being said, I haven't looked everywhere but I am at a loss to find someone like me. A person who has SpA + Lupus. That's a weird combo, but so is a drug switching on Lupus but not technically being classified as DIL.
Weird and super confusing. Makes it hard to pass info on to other doctors
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