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3 weeks ago I switched from tetracycline to minocycline. This past Thursday night I started a fever and a chill. When I checked my trunk today, I noticed more numerous and darker spots on the skin, which is a sign of my discoid lupus. How do I know if it's minocycline-induced-lupus, or herx. If it's MIL, I should stop minocycline; if it's herx, I should continue. What should I do? I am thinking of switching back to tetracycline.
[user=1182]Hoping[/user] wrote:
3 weeks ago I switched from tetracycline to minocycline. This past Thursday night I started a fever and a chill. When I checked my trunk today, I noticed more numerous and darker spots on the skin, which is a sign of my discoid lupus. How do I know if it's minocycline-induced-lupus, or herx. If it's MIL, I should stop minocycline; if it's herx, I should continue. What should I do? I am thinking of switching back to tetracycline.
Hi Hoping,
Are you still on mino 2 times a week or have you recently increased to 3 times per week? You switched to mino recently, so it could well be a herx. It's worth reading this whole link from the main site, but I've cut and pasted some pertinent bits for you:
http://roadback.org/index.cfm/fuseaction/education.display/display_id/91.html
“Jarisch-Herxheimer Reaction
Although RA is discussed in particular, patients with other inflammatory rheumatic diseases will recognize many issues mentioned here.
The Jarisch -Herxheimer, or Herxheimer reaction, was named for the German dermatologist, Karl Herxheimer (1844-1947). Dorlands Medical Dictionary refers to the Herxheimer reaction as a transient, short-term, immunological reaction commonly seen following antibiotic treatment of early and later stage [infectious] diseases which [may be] manifested by fever, chills, headache, myalgias (muscle pain), and exacerbations of cutaneous lesions. The reaction has been attributed to liberation of endotoxins-like substances or of antigens (a substance which causes an immune reaction) from the killed or dying microorganisms.”
You might also find this info relevant:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Failure-47383
“Lupus patients may want to use another tetracycline other than minocycline. A few studies have shown that minocycline can cause lupus like symptoms in some patients and the PDR states that IV and oral minocycline can exacerbate the symptoms of lupus in some patients. This may be a Herxheimer expression.
IN ADDITION, an association has been shown between M. hominis and lupus. M. hominis is resistant to erythromycin so this also should be avoided when prescribing for lupus patients.18 Ginsburg, 19 Cassell M. hominis is susceptible to clindamycin in vitro, possibly making it an effective adjunct to tetracyclines in patients testing positive for M. hominis. (See laboratory information.)”
Having some overlap with scleroderma and lupus, it might feel like you're stuck between a rock and hard place, as mino is preferred for sclero, but lupus patients, often being a little more on the hypersensitive side, prefer a tetracycline that is not quite as strong in its actions (better lipid soluabilty that gives mino superior tissue penetration).
As a fellow patient, my best guess is that if you've just experienced one fever/chill session, this may well have been a herx reaction as described above. If, however, it goes on and becomes too uncomfortable, you might want to ask your doc about lowering your mino dose to see how you do. If lowering the dose alleviates your symptoms, you might then be able to ask about adding a second pulsed antibiotic, perhaps once a week, like oral clindamycin (as described above) or azithromycin when things are stabilized. Finding the right dose and “tailoring the therapy,” as described in the book is pretty important, because there is no one universal dose for everyone.
As has been shared recently, some AP docs, like rheumatologist, Dr T in Boston (MIRA trials), is prescribing mino to his lupus patients, as well as Dr H in England. So there seems to be some disparity in agreement as to whether there is such a thing even as mino-induced lupus or just a worsening of symptoms as a result of die-off (a herx). What it may come down to, in the end, is whether or not the symptoms are short-lived or not or whether a prolonged expression of worsening and coping comes into question.
Definitely something to report to your AP doc, Hopeful, so that he/she can watch you carefully. They may want to order more frequent bloodwork through this early period.
FYI, I was talking with my doc on Friday about some recent fever episodes I'd be having on my mino days and he is running some Lupus tests on me to check for MIL and sending me to an allergist for allergy testing. He said febrile reactions (like fevers resulting from serum sickness) were usually a result of higher doses of antibiotics and that MIL was usually the result of more prolonged use of mino.
Hope something here might provide some leads for you to ask your AP doc about, Hopeful. Please let us know how you get on and what your AP doc says. Sending lots of good vibes your way that this is just a transitory herx that will soon pass.
Peace, Maz
It might be worthwhile to talk to your doc about starting with a smaller dose, like 50mg, since you're clearly reacting to 100mg. Give you a little more time to sort it out…
Maz, thanks so much. You always have such knowledgeable replies. I read your links very carefully and printed them out to keep for later reference as they are very useful. As you remember, I started minocycline 2 times a week as instructed by my doctor. But I saw that everybody is taking it MWF, I started taking it 3 times the 2nd/3rd week, hoping that it can bring down my ANA level soon. I guess that was a wrong move. My fever is gone after a few days, and my brief headache and muscle pain are gone. The only thing left is a cough due to the over-production of mucus, and occasional jaw pain on the right side. So I think I am going to switch back to 2 times a week and see what happens. I can always switch back to tetracycline if that creates a flare again. I don't want to report it to my doctor because he told me to do it 2 times a week to avoid too much toxin being released. I thought since I never had severe auto-immune symptoms other than having lost a small patch of hair permanently back in 2005, I should be able to take what everybody else is taking. So it's true that every person is different. Do you think it's a good idea to still give minocycline a chance? I am pretty normal now other than the cough and occasional jaw pain.
[user=1182]Hoping[/user] wrote:
I don't want to report it to my doctor because he told me to do it 2 times a week to avoid too much toxin being released. I thought since I never had severe auto-immune symptoms other than having lost a small patch of hair permanently back in 2005, I should be able to take what everybody else is taking. So it's true that every person is different. Do you think it's a good idea to still give minocycline a chance? I am pretty normal now other than the cough and occasional jaw pain.
Hi Hoping,
Sounds like your doc is confident about you taking mino and knows his stuff, so as long as he's watching your bloods carefully (lupus and inflammation markers), you're taking the dose he recommended and you're reporting any troubling symptoms to him, then you should be covered to continue taking your mino at the prescribed dose. As you'd just increased your dose in the last week or so before these symptoms arose, it 'sounds' like a classic herx, but I'm just a patient and can't know your situation for sure. 😉 Klogan is right, though, less is usually more in hypersensitive cases.
It's such a counter-intuitive protocol. I think our brains are programmed to think that, if we take more antibiotic, we'll get better faster. Of course, the opposite is the case here, because the rheumatic's tissues are very hypersensitive and if they become too inflammed from die-off, the antibiotic can't reach where it does most good and it becomes counterproductive. Hypersensitivity syndromes can feel just like disease progression and flaring. I've been through that, myself, when I was taking very high doses and combos for Lyme. It was a necessary evil in my case to hit coinfections, but it sure was a relief to be past that stage and to be on a lower dose.
I remember Lynnie wisely mentioning hypersensitivity syndrome in a post to you and the rationale for lower dosing. As far as I'm aware, those with Lupus or Lupus crossovers tend to be more hypersensitive than most. I have a transcript of a talk Dr Brown gave on this topic and it might be interesting for you to read this and keep it to hand. If you'd like a copy, just send me a PM with your email and I'll send it to you…it's about 4 pages long in a Word doc, but full of good info.
Does your doc do IV clindy by any chance? Just wondering if this might be a nice adjunct to your mino for your scleroderma, as you're on such a low dose.
Peace, Maz
Klogan, thanks for your advice.
Maz, I've sent you my email address. About IV Clinda, my doctor thought about that, but since I have to drive 5 hours back and forth to see him, he was wondering if someone in our town can administer that. For now, since I don't have severe symptoms and my concern is mainly my ANA level remaining unchanged after almost 3 years, I think I'll just stay with the oral version and see how it goes this year, and then go from there.Hoping – there are some interesting discussions on this topic if you put 'MIL' into the search box above. I have pasted one below posted by Maz in July last year and the link to the thread. Lynnie
Maz wrote 20th July 2008
Hi Wendi,
It's not really known whether MIL (minocycline induced lupus) is a result of the drug, itself, or whether it is the result of a sub-clincial manifestation of previously undiagnosed lupus. That is, a person may have an, as yet, undiagnosed form of lupus (doesn't show in bloodmarkers) and, when minocycline is started, it manifests as an exacerbation – a herx from die-off.
For those who adhere to infectious theory, there seem to also be two schools of thought…that MIL is a herx and may have manifested at some point anyway, so continue with treatment. Others prefer to change their antibiotic protocol to one that doesn't elicit this particular reaction, like doxycycline. I think continuing with minocycline in this type of instance really has to be a personal choice, based physician advice, preference and belief systems. (There is a bit of info on MIL on the main board).
I've questioned this and wondered why minocycline might induce lupus and not doxy, if it is indeed a herx. People also herx on doxy and tetracycline. Perhaps it is that minocycline has better tissue permeability…it gets deeper into places other tetracyclines don't? Or, minocycline just has different properties and there is some additional chemical that may trigger a bio-chemical reaction in some people?
I understand that there are a number of drugs out there that can cause drug-induced lupus. Would be kind of interesting if a study was done to see if there was some correlation could be found between them all.
If memory serves (but please don't quote me on this! ;)), I think that stats are that MIL can occur in 1 in 10,000 patients receiving minocycline. Joe shared a very interesting British study on this about a week or so ago. If you're interested, might be worth doing a bit of a scavenge through the recent threads to see if you can find it. The patient case studies are fascinating.
Peace, Maz
http://www.rbfbb.org/view_topic.php?id=934&forum_id=1&highlight=MIL
As before, I would also urge people to make us of the valuable information that can be found in archived posts on the Old Board (link to how to get there always available in an Announcement Post from Cheryl at top of General Discussion area). If you go to the old board and type in 'minocycline induced lupus', there are a host of very useful posts which will come up. One of these I have also copied and pasted below from a very experienced APer who has Lupus and had great success on AP.
Posted by Leslie (SLE) AP 10 years on Sat – Jun 23 – 07:09am:
In Reply to: lupus patients posted by marie on Fri – Jun 22 – 5:32pm:
Hi marie,
I had lupus for over 20 years before starting AP. I had to begin VERY slowly (am only on 25mg Minocin MWF now) as the die off was way too strong for me… so I went to the above dose and maintained. Some lupus patients can use more and many are prescribed doxycycline by their physicians as there is some thoughts about minocycline causing DIL (drug induced lupus) but the literature on that is inconclusive.
I am off all previous lupus related and other drugs after being on prednisone for decades.
I have mild kidney issues that never progressed but there are lupus patient with lupus nephritis who have had success on AP. If you are interested in getting in touch with an AP savvy physician who has treated lupus patients with kidney disease, you can ask for that here but be sure to write your email address on your post.
I have my life back after years of horrible medications and debilitation. Hope you decide to take the road back but do all the reading and ask all the questions you can.this is link to Old Board: https://www.roadback.org/cgi-bin/eboard30/index.cgi?board=Main
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)
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