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Hi, Everyone. I wanted to provide an update so that others who may have had a similar experience could make suggestions as to what I should consider next. I’ve been on minocycline for over 2 years now. I started low and slow in Jan 2015 with pulsed dosing. By November 2016, I was at 100 mg twice daily on MWF. I was doing well, and decided to discontinue my Plaquenil in August with my doctor’s approval. I wasn’t really sure if it was doing anything for me plus the price had dramatically increased. My doctor felt that I would likely experience a flare if the plaquenil was helping. I certainly did not flare, but I did notice a certain “creep” of minor symptoms such as stiffness behind the knees which I hadn’t experienced in some time.
After 5 weeks without major symptoms, I decided to once again increase my mino to M-F, 100 mg twice daily. I did not experience any major herxing with this increase, but my symptoms did continue and worsen. By mid-December, I decided that perhaps I should go back on Plaquenil and see what happened and my doctor agreed. I’ve now been back on plaquenil for 8 weeks without any real significant improvement. In fact, my symptoms have intensified.
Primarily, the morning stiffness in the fingers is really quite pronounced, and I’ve had to increase my anti-inflammatories which I had previously been reducing. As a point of reference, before discontinuing plaquenil, I had successfully reduced my diclofenac from daily use to once every 4.5 – 5 days. I am now back to daily use. I’ve considered that these symptoms could be herxing from the increase in my mino, but they started before the mino increase.
Due to pharmacy availability issues, I have recently switched to the Torrent (Ranbaxy) mino, so it’s possible I’ll see some results from that as well. Previously I was using the Teva for an extended period.
I wanted to have some ideas before I see my doctor in early March, and am hoping that others who may have had similar experiences will have some input for me as to what might be going on or what I should consider next.
Karen
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.You might ask your doctor about trying Zithromax 500 I think milligrams twice a week. I know of a retired AP doctor who combined antibiotics all the time successfully. You should also consider food intolerance testing such as the Cyrex Array 10.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHi Karen,
As to why you are getting worse, there are several possibilities. Minocycline may not be the right antibiotic for you — the bacteria may have become resistant or semi-resistant, or it may be making you worse because it does not “agree” with your system. Or you may reacting to one of the “inert” ingredients, such as corn starch or one of the dyes. I suspect that many of the people who don’t do well on generic minocycline capsules have a sensitivity to corn. I recently threw out most of a large bottle of vitamin C because the tablets contained corn starch. There is no doubt in my mind that I felt worse when I was taking them. I avoid generic minocycline capsules for the same reason.
Have you considered taking a one-week break from the mino to see if it helps? How is your diet? Have you eliminated any potential problem foods from your diet?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinUnfortunately, I’m allergic to Zithromax, Spiffy. Phil, I hadn’t considered taking a break from mino, but it is something to consider. As to my diet, I did an elimination diet (corn, gluten, sugar, dairy) sometime ago, and did not react when any of the foods were reintroduced. I’ve been limiting gluten for a few months now, but have not seen any evidence that it has helped.
If I take a week’s break, would I resume mino after that? I assume it would depend on my reaction to the break, but I’m not sure I know what my options would be at that point.
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.Not sure how long you did the elimination diet Curly but this may be useful for others anyway: with gluten, it can take 3 to 4 months for the antibodies to leave the system. Obviously, this is much more important for those who have any of the 4 genes for celiac, but I remember my AP Doc telling me that it would take 3 months gluten-free before I’d really notice the difference. There is also hidden gluten in many packaged products, because it’s the world’s cheapest binding agent.
If you are exposed to gluten, the gluten antibodies produced by your immune system stay in your body, causing damage long after the last molecule of gluten you ate is eliminated from your intestines. According to Dr. Peter Osborne from the Gluten Free Society, these antibodies have a half-life of up to three to four months.
Livestrong.com article on gluten
I have been gluten-free as part of my treatment regime for 8 years now. If I inadvertently consume any (rarely, but it happens), my stomach swells within an hour and I do get joint pains the next day.
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)Hi Karen,
Unfortunately, I’m allergic to Zithromax, Spiffy.
What happened when you took it? And do you remember if the tablets were pink or red?
As to my diet, I did an elimination diet (corn, gluten, sugar, dairy) sometime ago, and did not react when any of the foods were reintroduced.
Even if you weren’t sensitive to a particular food in the past, that doesn’t mean that you aren’t sensitive to it now. My original food sensitivities were dairy and nightshade vegetables. However, within the past ten years I have acquired sensitivities to corn, goat milk, peanuts, and sunflower seeds.
Don’t overlook the nightshade vegetables. See:
http://www.noarthritis.com/nightshades.htm
http://www.noarthritis.com/research.htmIf I take a week’s break, would I resume mino after that? I assume it would depend on my reaction to the break, but I’m not sure I know what my options would be at that point.
Assuming that you feel better after the one-week break, you could temporarily resume taking minocycline, though you would want to avoid taking it every day. Hopefully you’ll have better options after your appointment with your doctor next month. It might be best to take the one-week break starting the week prior to your appointment.
Here are some other options to consider:
1. Switch to generic minocycline tablets.
2. Switch to Aknemin minocycline capsules.
3. Switch to doxycycline.Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinThanks for the reply and options to consider. Can you explain further why you say I should avoid taking mino every day once I resume? It’s interesting to me because I did well when i was pulsing, but I felt initially felt a slight decline when I discontinued plaquenil, but then I started mino 5 days a week, and I’ve continued to decline. I realize that any of these circumstances could simply be coincidence, but it does get my radar up.
I am considering mino tablets, even though they cost 3 times what the capsules do. I’m also considering taking a week break, and then going back to pulsed dosing. I have not heard of the Aknemin minocycline. I’ll try to research it, but can you provide any details about why it might be good for me? Do you have any idea if it is difficult to find? I had also been thinking about doxycycline, but I’m not familiar with the recommended dosage. Is it typically pulsed? Incidentally, when I first consulted my functional medicine practitioner, she felt doxy was the way to go, but I was already on mino and doing well, so I didn’t switch.
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.Phil,
I forgot to answer your question regarding Zithromax. I had a full blown case of hives after taking my second round of Zithromax for bronchitis. As the hives crept up my neck, I lost my voice. This was at least 15 years ago, so I don’t remember the color of the pills. It was Zpak, but that’s all I remember. Are you thinking that I may have had a reaction to a dye or filler rather than the Zith itself?
Diagnosed with RA 10/2014 with very positive anti-CCP. Rheumatoid factor was negative and continues to be negative.
Began abx treatment 12/2014.
Currently taking minocycline 100 mg bid M-F, diclofenac 75 mg as needed, probiotics, various other supplements.Hi Karen,
Can you explain further why you say I should avoid taking mino every day once I resume? It’s interesting to me because I did well when i was pulsing, but I felt initially felt a slight decline when I discontinued plaquenil, but then I started mino 5 days a week, and I’ve continued to decline.
That was suggested as a temporary solution. The fact that your condition did not eventually improve after increasing your mino dose suggests the possibility that there is something in the generic mino you are taking that does not “agree” with your body. It might be the minocycline, or it might be one of the “inert” ingredients. Going back to MWF dosing would minimize your exposure to offending ingredient without giving up that particular generic mino completely. It’s not an ideal solution, which is why it would be better used as a temporary, short-term solution.
I have not heard of the Aknemin minocycline. I’ll try to research it, but can you provide any details about why it might be good for me?
It’s a brand of pelleted minocycline that’s made in Germany. One of the Canadian pharmacies sells it as “Minocin”. I suggested it not because of the pellets, but because it does not contain corn starch, and because it might be less expensive than minocycline tablets. Some people like Aknemin, but I also know of two people who improved after switching from Aknenim to powder-filled capsules (i.e., Minomycin, Teva-Minocycline). So even though I mentioned it as an option (because money might be an issue), I am reluctant to recommend it.
I had also been thinking about doxycycline, but I’m not familiar with the recommended dosage. Is it typically pulsed?
If need be, it can be pulsed — preferably on a short-term, temporary basis. Doxycycline is not as strong as minocycline, and you’ve been on minocycline long enough that you should have little or no trouble taking the full dose of doxy every day. By the way, some people take mino on MWF and doxy on all the other days (or the reverse), so there’s another option to consider.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Karen,
Are you thinking that I may have had a reaction to a dye or filler rather than the Zith itself?
Yes, so it may be worth seeing an allergist and getting tested to see if you are really allergic to azithromycin.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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