drugs for possible lupus

[Marie]

Hi,

I'm just thinking through things in preparation for my appointment tomorrow.  The appointment is just with the regular rheumatologist, but I plan to ask for some antibiotics.  I may have some RA, but my symptoms are also very consistent with lupus.  I've read that some antibiotics,, such as minocycline, doxycycline, and the tetracycline family in general are bad for lupus… but aren't these the drugs that AP doctors typically prescribe?  What drug should I request?

Thank you, Marie

[Marie]

interesting…young women most susceptible
 
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In the three years during which the above cases came to light there were only two cases of lupus[/b] caused by drugs other than minocycline seen by the Wellington Regional Rheumatology Unit. Although MIL is very rare in patients who are taking minocycline, the frequency with which the drug is prescribed may well mean that it is now the most common cause of drug-induced lupus[/b]. Scanty information exists in the literature about the risk to the individual of developing MIL. One study found an 8.5-fold risk of developing a lupus[/b]-like syndrome in current users of minocycline.13 The same study stressed the low absolute risk of developing lupus[/b]-like symptoms, with a rate of 52.8 cases per 100 000 prescriptions. Other tetracycline antibiotics were associated with a much lower risk of developing a lupus[/b]-like syndrome, with current use of doxycycline[/b], oxytetracycline, or tetracycline combined being associated with a 1.7-fold increased risk.13

 
It is important that clinicians are aware of the risk of patients on prolonged courses of minocycline developing a lupus[/b]-like syndrome, so that inappropriate investigation and treatment can be avoided.

http://www.nzma.org.nz/journal/116-1171/384/

[Maz]

[user=601]Marie[/user] wrote:

I may have some RA, but my symptoms are also very consistent with lupus.  I've read that some antibiotics,, such as minocycline, doxycycline, and the tetracycline family in general are bad for lupus… but aren't these the drugs that AP doctors typically prescribe?  What drug should I request?

Hi Marie,

Yes, the tetracyclines are generally the class of antibiotics prescribed for AP. However, some people are on other classes of antibiotics and some take combos. Dosing also varies, depending on individual tolerance.

Here are the recommendations on the main website for people who may have Lupus or Lupus-like tendencies:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Failure-47383

It's really not known whether mino-induced lupus is a result of the drug itself, or whether people who experience lupus-like symptoms while on mino may be manifesting a sub-clinical form of lupus as a result of a herxheimer reaction. In other words, they may have a tendency for lupus that just hasn't manifested yet and, when AP is started (specifically minocycline which has superior tissue permeability), then these symptoms 'might' be manifesting as a herxheimer reaction. That said, this hasn't really been proven and many lupus patients prefer to choose an alternate tetracycline (doxycycline or tetracycline) to hopefully avoid these complications. Some worsening of disease is expected in the early months of AP, anyway, which is why it's generally recommended to start low and slow.

An experienced AP physician should be able to help you find the appropriate antibiotic or combo of antibiotics for your presentation of symptoms. You should also find a lot of great info on the main site under the Education tab. Here is another Lupus-related link found under the Brochure section of the Education pages:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/97.html

All the very best for your doctor appt for tomorrow! Let us know how you get on. 🙂

Peace, Maz

[Joe M]

Hi Maz,

This paper suggests CRP may be a good indicator of whether or not the lupus like symptoms are drug induced (many drugs besides mino can induce lupus like symptoms)

Note:  This paper from a respected journal also says mino is much better than placebo in treating RA.

Anyway, I found it interesting.

http://rheumatology.oxfordjournals.org/cgi/content/full/40/3/329

[linda]

Is the drug induced lupus permanent or does or go away if the drug is discontinued?

[Maz]

[user=20]Joe M[/user] wrote:

This paper suggests CRP may be a good indicator of whether or not the lupus like symptoms are drug induced (many drugs besides mino can induce lupus like symptoms)

Hi Joe,

Thanks for thinking to send this study article. After quickly reading it through, I'm still not sure how it might answer the herx vs MIL (mino-induced lupus) question, though. 😕 Maybe I need to take a more in-depth look.

Interestingly, when I started high dose Lyme therapy, in Nov. 06, my cardio CRP went from a disease baseline of mid 20s to 44 within the first 3 months. That was with tetracycline (750mg bid) and biaxin (500mg bid). I also took plaquenil for the first 4.5 months. After the third month, however, my cardio CRP starting coming down. It continued to do at a pretty steady rate, even after stopping plaquenil.

I think this pattern of initial worsening is pretty typical of the early herxheimer months of antibiotic therapy. So, can't see how a study like this might be of any significance in terms of elevations of CRP in distinguishing between what may be an expected period of worsening and what may be a presentation of a drug-induced disease manifestation?  Maybe it's in the levels of CRP? Some of those case study subjects had CRPS up in the 100s.

Perhaps if this expected, initial worsening period (Brown said it could last 3 to 6 months and for others up to 2.5 years) doesn't ultimately improve with a lessening in disease markers over time, then this would be more indicative of whether mino is going to work for a Lupus patient or not. I just don't know if I'd want to wait, personally, to find out and would probably err on the side of caution and use low dose, pulsed doxy or tetracycline in mino's place…probably in combination with another antibiotic in alternating low dose pulses. This is probably a good instance where it's advisable to seek out an experience AP physician.

Thanks, Joe.

Peace, Maz

 

[Maz]

[user=11]linda[/user] wrote:

Is the drug induced lupus permanent or does or go away if the drug is discontinued?

Hi Linda,

According to articles I've read previously and also the one Joe just sent, MIL is reversible upon discontinuation of minocycline. For some, the reversal in symptoms is quite quick…for others it can take longer. The cases in Joe's study are pretty interesting in this regard. Would be great if these study subjects could be followed to see if they went on to develop Lupus later in life, long after mino was discontinued. 

Peace, Maz

[klogan]

I am still working on getting over my mino-induced Lupus, it's been, lets see 4 months. It has slowed down the AP a bit, because I had to stop for a while. Just using 50mg doxy so far.. But hey, we're not in this for the quick fix.

Don't think the doxy is working for me at 50mg, but will ramp up slowwwly…
Mino worked better for me before I went up to 100mg and catapaulted myself into an exciting adventure.

[Author]

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