Home Forums General Discussion Doxycycline

This topic contains 8 replies, has 3 voices, and was last updated by  PhilC 5 years, 11 months ago.

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  • #307113
    aboyer
    Participant

    I was wondering if anyone has had any luck treating RA with doxycycline alone? Please share experiences and side effects. Thanks.

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #365820
    Maz
    Keymaster

    @aboyer wrote:

    I was wondering if anyone has had any luck treating RA with doxycycline alone? Please share experiences and side effects. Thanks.

    Hi Aboyer,

    Very nice to meet you, but sorry you had to seek us out.

    I’ve used minocycline, doxycycline and tetracycline. The minocycline was definitely the most effective in my case, used in a smaller, pulsed dose fashion (100mg BID on MWF only) along with azithromycin (250mg in much small doses, once or several times a week). Unfortunately, I had to stop minocycline due to developing drug-induced lupus, which is rare, but can happen in those who have trouble metabolizing certain drugs that can cause this effect. I have never found doxycycline to be as effective as minocycline, which had brought my very severe RA to remission within 10 months in labs and symptoms (after a year of heavier abx protocols to treat Lyme and coinfections). So, I have had to work up the doxy dose to daily dosing and take it alongside other anti-microbials and IV clindamycin. Tetracycline, in higher doses (750mg BID in combo with biaxin 500mg BID) was a great protocol for me, as well, but never as effective as the minocycline.

    Minocycline, in general, is thought to have better tissue penetration, because it has greater lipid solubility, meaning that it can cross the cell walls more effectively. The following explains:

    http://www.digplanet.com/wiki/Minocycline

    “Minocycline is the most lipid-soluble of the tetracycline-class antibiotics, giving it the greatest penetration into the prostate and brain, but also the greatest amount of central nervous system (CNS)-related side effects, such as vertigo. A common side effect is diarrhea. Uncommon side effects (with prolonged therapy) include skin discolouration and autoimmune disorders that are not seen with other drugs in the class.”

    The early ‘possible’ side-effects of vertigo and nausea usually pass within a period of months, as the body adjusts. Not everyone experiences these, however, and they can be greatly averted by using smaller starting doses and taking the dose a couple hours after dinner and a couple hours before bed. The potential for skin discoloration (because it is highly chelative and binds to iron) is also thought to be averted by avoiding too much sun and also taking daily doses of buffered Vit C (which helps to metabolize iron). Minocycline was developed with teens in mind (for acne), so one of its benefits is that it can also be taken with a little food (nothing with minerals, though), if needed to prevent nausea, without losing too much of its effectiveness.

    The MIRA (minocycline in RA) trials showed good effectiveness for RA, though doxycycline can be substituted in equivalent doses if a person can’t tolerate minocycline for whatever reason. Some folks do find doxy harder on the stomach, though.

    If one is just starting out with AP, then starting on a monotherapy in low pulsed doses is the way most AP docs will do it, titrating dose as time goes by to individual tolerance. Brown typically started RAers with a lot of inflam on 50mg or 100mg on just a Mon, Wed, or Fri or just a Mon and Fri as herxing became intolerable. Folks already on some form of immune-suppression generally tend to be able to tolerate higher dosing schedules, but this isn’t always the case either and response can be very individual. After about 6 to 8 months of monotherapy, if no response is noted (labs and symptoms), then it is time to go back to the drawing board to look at what else may be added to the protocol to give things a boost. Some folks will begin the treatment with a 5 day series of IV clindamcyin or add it in later. Oral macrolides are also used, such as biaxin or azithromycin.

    Probiotics are pretty much accepted as a “must” around here by all the seasoned APers in order to protect the gut and to replace the good fauna destroyed by the abx. This helps to keep the gut in good shape and to avoid the consequence of diarrhea and chronic candida issues. It is much easier to prevent candida than it is to treat it once it settles in.

    The most notable side-effects I’ve personally had from doxy is that it is less easy to take doxy on an empty stomach. The sensation that I’ve experienced on occasion has been like a gnawing hunger. Otherwise, the herxing has been less on doxy, but this has also meant that it hasn’t been quite as effective as good old minocycline in my case. Some amount of herxing is to be expected, in other words, and although it can be unnerving, is actually a good sign the abx is hitting its microbial targets.

    Hope that helps a bit…maybe more info than you wanted or needed, but perhaps it will be of use to another newcomer who is wondering where to begin.

    All the best, Aboyer, and welcome to the RBF forum. 🙂

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365821
    aboyer
    Participant

    I was on minocycline years ago, and it worked wonderful for awhile, but I started getting headaches really bad after several months on it, so now i take doxycycline but haven’t really felt any response from it yet. Its very frustrating.

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #365822
    Maz
    Keymaster

    @aboyer wrote:

    I was on minocycline years ago, and it worked wonderful for awhile, but I started getting headaches really bad after several months on it, so now i take doxycycline but haven’t really felt any response from it yet. Its very frustrating.

    Yep…know how you feel regarding the “frustrating” bit. Are you working with an experienced AP doc, Aboyer, or case-managing yourself? The latter can produce a frustration all of its own, but so can any blip along the way where tweaks may be needed and time taken to figure them out.

    Yes, sometimes the headaches experienced early on are attributed to herxing. It may well be the case, but it may also be a side-effect due to minocycline’s greater ability to cross the blood-brain barrier for deeper tissue penetration and a resulting “benign intracranial hypertension” as a result. In some cases, the “benign” part isn’t so benign. In other cases, where true herxing is going on, the headaches will usually pass in time as the body adjusts to the medication. This is something that needs to be case-managed by the treating doctor who hopefully can tell the difference. 😉

    What dose of mino were you taking, Aboyer? Also, what dose of doxy are you using now and how long have you been taking it? Are you taking any other drugs?

    It can help to add a signature line that includes “diagnosis and date of dx,” “all meds and when these were started,” “supps,” etc, as it usually helps others to respond from personal experience. It’s easy to add a signature line that appears in all posts automatically, each time you post. Just go to your User Control Panel above, click on this and then click on “Profile” and then the tab alongside that says, “Edit Signature.” When you’ve added what you want to your signature line, then just click the submit button. This can be edited at any time.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365823
    aboyer
    Participant

    Maz,

    I have had RA for about 8 years. I took 200 mg of minocycline on mwf (prescribed by rheumatologist) for almost a year when I was first diagnosed. I started experiencing severe headaches after months of taking it. I am now on doxycycline 50 mg every day. My dr. isn’t an AP dr., so she doesn’t really have a lot of experience in treating with antibiotics. I am also taking kineret daily shots for RA. Thanks so much for all of the information on your experience.

    Adrienne

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #365824
    Maz
    Keymaster

    @aboyer wrote:

    Maz,

    I have had RA for about 8 years. I took 200 mg of minocycline on mwf (prescribed by rheumatologist) for almost a year when I was first diagnosed. I started experiencing severe headaches after months of taking it. I am now on doxycycline 50 mg every day. My dr. isn’t an AP dr., so she doesn’t really have a lot of experience in treating with antibiotics. I am also taking kineret daily shots for RA. Thanks so much for all of the information on your experience.

    Adrienne

    Adrienne, thanks for elaborating a bit…still a bit unsure what you were doing for treatment in-between stopping mino 7 years ago and more recently when you re-initiated AP with doxy. Were you just using kineret during this time or something else or nothing at all? Is the kineret not doing much for you now or also just recently started?

    It’s perfectly fine to use more conventional drugs with AP – many people do this initially with the intent of eventually weaning off their other drugs eventually. But, it may be salient to you to know that when the immune system is suppressed that you likely won’t be getting as much benefit from the doxy in terms of its anti-microbial effects. This is because the tetracyclines are “bacteriostatic.” Here is an explanation of what a bacteriostatic does:

    http://en.wikipedia.org/wiki/Bacteriostatic

    “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.”

    In essence, what this means is that a functioning immune system is quite important if one is using a bacteriostatic abx, like doxycycline, minocycline or tetracycline, for example, if full benefits are to be achieved. This is because the abx will interfere with certain ezymatic processes inside the bug to disable it, but the immune system actually does the killing and cleaning up. If the immune system is impaired, this part of the process doesn’t happen very effectively. People on immune-suppressive meds will still reap some of the immune-modulatory effects of tetras, but just not much of the anti-microbial effects (except in much higher doses, which tend to be more bacteriocidal and killing bugs outright).

    One thought for you…whereas before you were on 600mg of minocycline per week, now you are only on 350mg doxy per week. This dose may actually not be enough considering that minocycline can sometimes work more effectively, in general, in lower doses than doxycycline (due to its greater lipid solubility mentioned above). I also did well on 100mg twice daily mino on MWF, but this same dose was not as effective using doxy and I had to go to 100mg twice daily dosing and combine it with IV clindamycin. Just a fellow-patient thought, but I wonder if an increase in dose may also work better for you? Perhaps something to discuss with your doc, because dosing of mino and doxy is considered equivalent – that is 100mg mino is equivalent to 100mg doxy. Tetracycline, on the other hand tends to need higher dosing and 250mg tetra seems to be equivalent to either 100mg doxy or mino (see end of Brown documentary at top of forum).

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #365825
    PhilC
    Participant

    Hi Adrienne,

    How long have you been taking doxycycline?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

    #365826
    aboyer
    Participant

    Sorry for taking so long is responding. I have been on several different medications over the years, methotrexate, enbrel, humira, simponi, etc. I have tried them all. I have taken doxy and tetracycline before many years ago, but didn’t see any results. When I do take the antibiotics, I’m always in a lot of pain. My rheumy prescribed methotrexate and doxy together before in the past, but I was scared to take the two of them together, because of the interacting side effects. Right now I am taking kineret and doxy, but again, no relief from doxy. I might see about getting my doctor to up the dosage to 100 mg. I haven’t been taking them very long. I’m just very frustrated because nothing seems to be working, and I am hurting. Max, thank you for all the advice.

    Adrienne

    Diagnosed with severe RA 12 years ago
    Tested positive for M. pneumoniae and C. pneumoniae

    Current meds: Kineret 100mg daily, plaquenil 100 mg daily, and just started on minocycline 50 mg m, w, f

    Supplements: fish oil, vitamin b12, folate, b6, iron, NAC, selenium, zinc, vitamin c, and biotin

    #365827
    PhilC
    Participant

    Hi Adrienne,

    @aboyer wrote:

    Right now I am taking kineret and doxy, but again, no relief from doxy. I might see about getting my doctor to up the dosage to 100 mg. I haven’t been taking them very long.

    If you have been on doxy for at least a month, then increasing the dose to 100 mg makes sense.

    @aboyer wrote:

    I’m just very frustrated because nothing seems to be working, and I am hurting.

    What else have you done to get better (besides taking drugs)? Have you changed your diet?

    Phil

    "Unthinking respect for authority is the greatest enemy of truth."
    - Albert Einstein

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