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Today I met with my new rheumatologist in Leeds, UK. She seemed very knowledgable and interested. I told her that I am currently taking Enbrel and minocylne to combat my RA. She expressed concern with me using both as apparently minocylene can raise the number of antibodies in your body, potentially causing lupus and also inhibiting the potential of taking other biological drugs in the future.
It is worth mentioning that in the past two weeks I have felt a a lot better, and do feel a slow gradual improvement in my condition.
Has anybody else ever heard this view
It is also worth mentioning that my consultant mentioned that she knows of nobody else with RA on minocylene, and thought it was an old fashioned drug compared to the new biological drugs.
I must mention that I thought she was very well informed and did not pressurise me in any way.
Hi,
@Dunlop321 wrote:She expressed concern with me using both as apparently minocylene can raise the number of antibodies in your body, potentially causing lupus and also inhibiting the potential of taking other biological drugs in the future.
Unfortunately, that appears to be a common scare tactic used by rheumatologists. Some of what she referred to is true, but they are not common side effects of minocycline, and not something I would worry about.
As for “inhibiting the potential of taking other biological drugs in the future,” I had never heard of that before. It sounds like nonsense to me. According to what I’ve read, the biological drugs sometimes stop working, necessitating a switch to a different biological. Although this is just a guess, it’s probably the very nature of the biological drugs that causes this phenomenon.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Dunlop
Your rheumatologist, indeed may not have heard of anyone with RA being on Minocyline, but as you may have heard on this website there are many who do so, including myself. Doing the AP protocol is usually not known, understood, and in many cases not tolerated by Rheumatology, or Doctors. You may have read that it has been difficult to do the AP protocol as many Doctors will not accept or prescribe Minocycline.I have only recently stopped Humira, another Biologic as I have just been diagnosed with Latent TB. I have been on Humira for over two years, it did work initially, but after about a year it stopped working. It was then I began Mino, with the hoe I could drop the Humira. I do know that the Biologic can reduce the efficacy of the Mino, but the most of what your Rheumy has told you sounds like a lack of knowledge in what you are trying to do with the Mino.
Wish you well
Sandra@Dunlop321 wrote:
Today I met with my new rheumatologist in Leeds, UK. She seemed very knowledgable and interested. I told her that I am currently taking Enbrel and minocylne to combat my RA. She expressed concern with me using both as apparently minocylene can raise the number of antibodies in your body, potentially causing lupus and also inhibiting the potential of taking other biological drugs in the future.
It is worth mentioning that in the past two weeks I have felt a a lot better, and do feel a slow gradual improvement in my condition.
Has anybody else ever heard this view
Hi Dunlop,
Yes, I’ve heard of this view, because I’ve been one of the unlucky schmucks to get DILE. Minocycline is not the only drug that may cause it. There are a number of medications that cause it in those who are pre-disposed. Sulpha drugs need to be avoided, including sulphasalzine, some thyroid and heart meds….but if you also check the package insert on your Enbrel (if it’s packaged as it is here in the US), it will also have warnings about the drug possibly causing “lupus-like” or “MS-like” symptoms. Here are a couple studies from 2002/2003, when the drug was still quite young (marketed in 1999):
http://link.springer.com/article/10.1007/s10067-002-0654-5#page-1
So, what your rheumy has omitted to tell you is that your Enbrel may also cause it….but only if you have a pre-disposition to DILE and this is quite rare for either minocycline or Enbrel. In fact, if you got it from one or the other drug, it’s likely you’d also get from the other, as well. Maybe what she’s concerned about is that she wouldn’t know which drug started it? Truth be told, if a person has a propensity to develop DILE, then any of the known drugs that can cause this “fake” lupus (which resolves upon stopping the offending drug) will or could be a problem with chronic use. So, minocycline would not make it difficult to try a different biologic…if a person has this predisposition, any drug known to cause it can be a problem! Interestingly, I’ve spoken to a number of folks who came to RBF because they developed DILE (and some with MS symptoms) from taking a biologic. So, it goes both ways.
Dunlop, it says in your sig line that you, “Started Enbrel in 2007. Worked brilliantly until summer 2012.” Does that mean your doc still has you on Enbrel even though it’s no longer working or did you switch to a different biologic?” Just wondering, because my guess is that she’d probably prefer to put you on methotrexate in combo with the Enbrel, as mtx is known to block antibodies from building up to the biologic, thereby limiting the potential for it failing after X-number of years.
There is nothing wrong with using a biologic with AP, but it’s a bit misleading when rheumies provide false info about DILE, scaring patients about it, when it says right on the package insert of biologics and other commonly-used rheumatic drugs (and other classes of drugs) that they may cause DILE!!! My understanding of the DILE condition is that it is believed to be caused by a person’s inability to metabolize some meds (poor acetylation) swiftly enough, so they build up to toxic levels in the body – causing the body to be unable to identify foreign antigens – and create this lupus-like syndrome…which to all intents and purposes “looks” like lupus, but dissipates and disappears (labs and symptoms) when the drug is stopped. The FDA reported a significant finding on this in 2012, stating that a particular genetic haplotype has been identified as causing this predisposition – worth reading:
viewtopic.php?f=1&t=7309&p=61614&hilit=1%3A10000+dile#p61614
On the other hand, the rheumy’s intentions may be good in that she/he probably believes that mino is a weak DMARD and they want to be able to keep your options open for later down the road (especially as now the Enbrel no longer works)….but, again, they probably don’t recognize that many people can eventually taper and stop their biologic when their AP kicks in….and that if you are prone to DILE, one could be equally as susceptible to its development by using a biologic as using mino.
Thank you Phil, Sandra and Maz, your replies are very much appreciated. The forum really is a great support.
Maz, yes I’m still on Enbrel now. It’s impact has reduced. I tried methotrexate before and it did not agree with my liver, plus not good for my fertility. The reduced impact of Enbrel and the indifference of my previous rheumy in Stevenage lead me to seek private health care help, and eventually onto AP treatment. I have left a message with my private rheumy so will share her view too.
Is having a raised level of antibodies a common symptom of DILE?
I do believe that the intentions of this new rheumy were good and wants to keep my options open for future treatment. Your are correct she did compare minocylene to a DMARD (hydrochloroquinine), but other rheumys prescribe Enbrel and Dmards together. Bit confused with it all to b honest.
@Dunlop321 wrote:
Is having a raised level of antibodies a common symptom of DILE?
Depends which antibodies. ANA, RF and anti-CCP can elevate in the first few months of using AP due to the herx response (or when tapering from another DMARD or biologic, as the immune system wakes up again). However, over time, these antibodies should start to come down.
Other auto-antibodies can develop as a result of DILE and, if previously negative, the ANA may suddenly go positive with a homogenous pattern. The defining auto-antibody for DILE, however, is the anti-histone antibody test. This is a very simple blood lab to run and to check at intervals if there is a concern about DILE.
I do believe that the intentions of this new rheumy were good and wants to keep my options open for future treatment. Your are correct she did compare minocylene to a DMARD (hydrochloroquinine), but other rheumys prescribe Enbrel and Dmards together. Bit confused with it all to b honest.
I think the confusion arises with regard to the two different persepectives held about minocycline, as a DMARD or working to lower pathogen load. Rheumatologists only see mino as a drug that mildly modifies immune response and, compared to more powerful drugs, like methotrexate and biologics that work much faster for pain relief, they view it as a weak, “old,” DMARD. If the doc is an AP doc, then the view held is different. That is, they see AP as a long-term therapy that gradually reduces pathogen load, over an extended period of time, and thus, symptoms will regress much more slowly.
Again, nothing wrong with using a biologic with AP, but worth noting that minocycline will largely only work for its DMARD props while on immune-suppressive therapy. So, from this vantage, the rheumy is probably right that it will only work as a weak DMARD. This is because a functioning immune system is needed for bacteriostatic abx, as this class of abx doesn’t kill bugs outright, it just disables them and it is the immune system that swoops in to do the clearing away of weakened/dead bugs. This link explains the action of bacteriostatic-type abx:
http://en.wikipedia.org/wiki/Bacteriostatic_agent
“Bacteriostatic antibiotics limit the growth of bacteria by interfering with bacterial protein production, DNA replication, or other aspects of bacterial cellular metabolism. They must work together with the immune system to remove the microorganisms from the body.”
Hope this helps, Dunlop, and wishing you all the best in working out the best path for you.
Thank you Maz, a great detailed response again. 😀
In your view is there little point in trying AP therapy when on biological drugs, as your immune system is not fully active?
Perhaps I need to consider slowly reducing my weekly enbrel injection.
DILE is Drug induced lupus erythematosus
http://en.wikipedia.org/wiki/Drug-induced_lupus_erythematosus
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)@Dunlop321 wrote:
In your view is there little point in trying AP therapy when on biological drugs, as your immune system is not fully active?
Perhaps I need to consider slowly reducing my weekly enbrel injection.
Hi Dunlop,
On the contrary! Minocycline has some great DMARD props, including anti-collagenase ones, that help to block the enzymes that destroy joints. So, if the Enbrel isn’t working all that effectively anymore, then it makes a nice addition. It’s just that with the reduced effectiveness of the Enbrel, you may get more breakthru herxing than someone who is fully covered with it.
You’re on the therapeutic dose of mino (100mg MWF) of someone who would normally be starting AP with a clean slate (no other DMARDs), so one thing to consider is that, while on Enbrel, the mino dose might need to be higher (for full DMARD effect). This is something that you could write to Dr. S. about to ask for his experienced input on dosing with Enbrel.
The thing is, if he does suggest tweaking your AP, you will want to wait until you’re well stabilized on the new dosing schedule before trying to lower the Enbrel. Changing anything in one’s med protocol too quickly can result in rebound flaring from immune-suppressant withdrawl and also increased herxing as the immune system wakes up…so a double-whammy, so to speak.
So, my best fellow patient suggestion would be to email Dr. S. and ask him for his wise insight on where you stand (5.5 months into AP on 100mg MWF dosing with Enbrel that has lost effectiveness) and see what he thinks about your current protocol and how it can be optimized for you. If you need his contact info, let me know, and I’ll PM you with it. 😉
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