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hi everyone! 1st post here.
I have MCTD for 2 decades, developed retinal toxicity from decades of Plaquenil with Raynauds as primary symptom, stable pulmonary fibrosis for years. Now diagnosed with overlap limited scleroderma & lupus. Placed on Methotrexate few months ago for tightening fingertips down to my knuckles.While researching online,I found road back, ordered & read the books.
I am interested on starting Minocin, but with overlap lupus would it be contraindicated? I understand I can use other tetracyclines like Doxy,Is that also AP for Scleroderma, anybody? I’m afraid my fingers continues to swell & tighten. TIA.Hi there, gld2bhr95, and nice of you to join us!
Minocycline was used by Dr. Brown for lupus. As per the info in the FAQ section, the concern about drug-induced lupus is a different thing – a drug-induced reaction in those genetically susceptible. If someone experiences it, it goes away after the offending med is withdrawn and doesn’t cause actual lupus. There are many meds that can cause it, including some rheumatic biologics, penicillamine, suphasalazine, etc, and you can find lists online.
If it’s a concern for anyone, it can be monitored easily with routine labs, but for the most part it’s pretty uncommon. The main concern for those with lupus is that these patients tend to be a bit hypersensitive, and patient experience here has generally been that starting on the daily protocol can be a bit much, leading to a lot of herxing. So, lupus patients tend to take a low and slow approach (pulsed protocol). The irony is that those with scleroderma tend to be able to tolerate the daily protocol very well and the preference is to aim for that to gain control of their scleroderma. It’s a pretty individual thing. Some scleroderma folks do use doxycycline – and Dr. Brown used it before Minocycline was available – but it doesn’t have the superior tissue penetration of minocycline and can take longer to kick in. Again – a very individual thing.
It can be a process of tweaking the protocol to tolerance and it can certainly help to work with a doc who is experienced and can help with these tweaks.
It sounds like you’ve really done your homework, able to make your own well-informed decisions, and wish you well as you begin your journey, whichever route you decide to go.
Thank You for the info,Maz!
My rheumatologist just ignore me when I showed her the AP protocol, I’m trying to get my primary to start me on Minocin, but he’s afraid with my overlap Lupus/scleroderma. He’s still debating about giving me the Rx.
I’m gonna try Dr. Fry’s telemedicine consult. I don’t have all the scleroderma lab results beside ANA, DsDna, CRP. My rheumatologist believe I don’t need the labs, she goes by physical symptoms. She wants me to continue Methotrexate…
Yay!Oh BTW, I suggested labs to my primary.
Lyme & Chlamydia are both negative. Ebb Ab VGA,IgM is negative.
EbvAb VCA,IgG is high= 148 EbvNa IgG is high= 425
That’s all he ordered. What else labs do I need?
So am I a candidate for AP protocol?
TIA- Hi,
I’m trying to get my primary to start me on Minocin, but he’s afraid with my overlap Lupus/scleroderma. He’s still debating about giving me the Rx.
Explain to your doctor that as long as your C-reactive protein (CRP) is checked periodically, there is no need for concern. Then show him this article:
Minocycline‐induced lupus: clinical features and response to rechallenge
https://academic.oup.com/rheumatology/article/40/3/329/1787954She wants me to continue Methotrexate.
There is a drug interaction between methotrexate and minocycline that you need to be aware of.
For more information, see:
https://www.drugs.com/interactions-check.php?drug_list=1590-0,1636-0So am I a candidate for AP protocol?
Yes.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi gld2bhr95,
You mention you have had stable pulmonary fibrosis for years, so I wonder if your rheumy discussed the possible lung issues that can arise with methotrexate? This is just something I think I’d want to ask about as there may be better DMARD or biologic options in your particular case? Were you advised to also take folic acid to help reduce any chance of methotrexate toxicity?
There is another forum user here, Calida, who hasn’t visited in a while but has the scleroderma/lupus mix and I wonder if it might help to reach out to her? You can always search her past posts on the forum by typing her User name into the search box above. She’s taken an integrative approach to treating her rheumatic disease and maybe you’ll find her path interesting to read about?
If you take a look at the RA research section of the site, there is the Nebraska study that was run by rheumatologist, O’Dell, who used a combo of doxycycline and methotrexate, so these two are used together safely to effect greater improvements in symptoms.
Dr. Trentham, a rheumatologist (now retired) at Beth Israel, Boston, who ran the Minocycline in RA trials (Harvard “Daily” Protocol), also commented in his article:
Antibiotic Therapy for Rheumatic Disease: You know where we have been; so where are we now?
Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.
Perhaps it’s a dose-dependent interaction with Minocycline, as some folks take much higher methotrexate doses than others? What do you think, Phil?
If doxycycline is preferred, doxy monohydrate can sometimes be easier on the stomach for lupus patients than doxy hyclate.
If you decide to do telemedicine with Dr. F., in AZ, please let us know how you get on. He’s pretty experienced and runs his own infection testing labs for autoimmune patients through Fry Laboratories. You can ask him about mycoplasma, strep, bartonella, chlamydia, and Lyme testing, for instance. There are other laboratories that run specialized testing for all these types of infections, but it might help for the doc to take a history of past known infections and then decide from there which lab to use as it can get pretty expensive. It can be a process to narrow down the field, in other words, but finding chronic infections can ultimately help determine what type of protocol to follow. It’s a journey of discovery and can take a while to find answers.
Thank you @ PhilC & MAz.
It’s truly an awakening for me, learning all these wealth of information from all of you.
I do get Folic acid 1 mg daily even on Methotrexate day-10 mg weekly. I will ask my Rheumatology on Methotrexate risk for pulmonary fibrosis. She writes on my Patient portal- that is very low dose! She did not want me to stop it when I receive my Covid Vaccine.
I”ll read on Calida’s journey, hoping to get tips on managing this overlap, sometimes I just cry when these fingers gets so tight & painful.
Thank You Again, I appreciate the responses, God Bless!Tina
Perhaps it’s a dose-dependent interaction with Minocycline, as some folks take much higher methotrexate doses than others? What do you think, Phil?
Yes, I think so. I mentioned it in case the dose of methotrexate (MTX) needs to be adjusted. For example, if liver enzymes become elevated, some doctors would likely insist that the minocycline be discontinued, instead of doing the smart thing which is to try lowering the dose of MTX. If minocycline is making the blood level of MTX higher than it would otherwise be, then it makes perfect sense to lower the dose of MTX. Conversely, if minocycline is making the blood level of MTX lower than it would otherwise be, then it makes perfect sense to increase the dose of MTX — but only if doing so is actually necessary to fight inflammation (it may not be since minocycline also has anti-inflammatory properties).
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein - Hi,
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