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Hello everyone. So a little background on me. I’m a 48 year old male and found out about three years ago my RF was 29 after complaining about hand pain and other issues. So for about three months now I’ve been taking minocycline 100mg twice a day. I do feel it’s made an improvement in overall fatigue however I have been experiencing worsening pain and swelling in my hands and knuckles. I understand this could be a Herxheimer reaction but how do I really know? So far, I’ve only been seen by a general practitioner as he did agree to let me try the minocycline. My RF was at 19 when we checked a month or so ago. I didn’t have knuckle swelling before the minocycline so I’m just seeking advice on what to think now. Has anyone had this happen and did it improve? I am still optimistic about the treatment and realize it’s only been three months. I also have been taking 5 mg of prednisone a day on average for a month or so. I’ve changed to an anti-inflammatory diet but wonder if there is more I can do. Thanks for any responses. I can provide more information if needed but didn’t want to write a novel 🙂
Hi Mark,
Yes, fatigue lifting is usually the first sign the treatment is having good effect! Three months is still very early days, because this is a very slow therapy and a common pattern is to experience taking a couple steps forward and one back, all the way to remission. Remission of symptoms is the ultimate goal and time it takes to reach this point is different for everybody. Men, on the whole, tend to have a swifter response, but there are variables such as which generics work or don’t, disease duration and severity, overall state of health and comorbidities, hormones, age, etc.
When you say you had hand pain and “other issues,” were these other symptoms related to RA, do you think? Can you recall any triggering infection, like a bad chest, dental infection, gut or UTI issues, tick bite, etc? Sometimes there are clues like this that experienced docs will assess to individualize the protocol. Are you having regular bloodwork run and have you been officially diagnosed with RA? RF can be positive in other rheumatic and unrelated conditions. Any other lab indicators, like anti-CCP, SED Rate, CRP, and/or ANA?
You started on the highest daily dosing schedule, which not everyone can tolerate. Sometimes (not saying this is necessarily the case for you), early herxing after starting AP at the high dose end can lead to a hypersensitivity state. What this means is that there is too much die-off, leading to an abundance of circulating endotoxins. The body can’t process these out quickly enough and so reacts with swelling and worsening symptoms. Brown’s theory was that it’s these toxins to which rheumatic tissues are allergic (bacterial hypersensitivity). He talked about this in a presentation you’ll find at the foot of the Resources section of the site. It’s worth a read and trying to figure out if this may be part of your equation. If so, it may help to place some focus on learning how to detox. There are a whole slew of things people here do, from drinking lots of water, to taking anti-oxidative supps, to ensuring constipation doesn’t occur, IV Vitamin C and glutathione, infrared saunas, etc, etc.
Guidelines For Infectious Hypersensitivity Approach To The Treatment Of Rheumatoid Arthritis
It sounds like you’re doing a lot of things right and you’ve done your homework. Alas, many of us find we need to tweak things along the way and find what suits us best to support the therapy – all part of the journey.
Thank you so much for the thoughtful response. I have had many symptoms over the years such as knee pan, frozen shoulder, wrist pain and foot pain that prevented me from walking normally and confining me to the couch for days at a time. I also had a very painful left index finger that eventually went slightly crooked and no longer functions normally. These symptoms combined with the elevated RF mostly convinced my doctor that I had RA but he did ask me to see a rheumatologist. I did but didn’t continue with it due to work obligations and the fact I was not interested in the mainstream treatments that I figured would be prescribed. I did have gingivitis as a teenager and still have dental issues I am trying to resolve hoping the minocycline will also aid in that quest and it has helped.
As for the blood testing as I recall my CRP levels were low a few years back but only one test was performed for that. The RF had been tested a few times and stayed steady at 29 until the treatment with minocycline. My feet were x-rayed and athritis was found so my doctor assumed RA was the culprit. Reading your response has helped me stay optimistic and encouraged. I will ask my doctor about the other tests that would be helpful and I will have those done and read some more on detoxing. I am thinking about ordering Minocin instead of the generic I get from Rite-Aid as well Thanks again for all your help.Hi Mark,
Hang in there – AP isn’t an overnight miracle cure and the first year and episodic flaring can be unnerving at times. The goal is to slow down the disease process, and patient experience shared here (and as described in the Scammell book) is that it happens in gradual increments, with flares becoming less frequent, less severe, and shorter in duration, over time. Minocycline has wonderful joint-protective effects, blocking the destructive enzyme, collagenase, but is not like prednisone, or other DMARDs, that provide more tangible, immediate pain relief.
Did you keep copies of the labs the rheumy took? Do you know if he/she ran the HLA B27 test to check for reactive arthritis?
No unfortunately we didn’t get that far with the process. My general practitioner ordered the blood tests and really wasn’t experienced in rheumatology. He is still encouraging me to seek another specialist as he feels it’s in my best interest. I was grateful that he was open minded enough to prescribe the minocycline as I hear methotrexate is prescribed typically in my area and I didn’t want to accept that. Since then I’ve been reading Scammells book and this site and trying to learn as much as I can on the subject albeit complicated. I certainly appreciate all the information and will continue seeking knowledge here. You do an amazing job at explaining this very complex subject! I would like to stick with my GP because I think I found a good one that will work with me on things. I was planning on requesting all the specialized blood tests the next time I see him and maybe get a better idea from our own research how things are going in that regard. It’s great to hear some encouraging words here on this site and continue this daily battle. It does help.
Hi Mark,
Which generic are you getting from Rite Aid? If you don’t know you can just tell me what’s written on the pills.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil,
They are manufactured by Aurobindo Pharma. The marking on them is C78. Thanks for any input on the quality.Hi Mark – and welcome. I will share with you that I did poorly on Aurobindo brand. In my area that was the only option that Walgreens pharmacy would offer — I now purchase my minocycline through Canadian online pharmacies. You might do fine on Aurobindo — but be aware they have had multiple complaints about quality control in their practices — as in this example: (not mino)
https://www.thehindubusinessline.com/companies/usfda-issues-warning-letter-to-aurobindo-pharma/article28271039.ecebest!
BonnieBonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!Hi Mark,
They are manufactured by Aurobindo Pharma. The marking on them is C78. Thanks for any input on the quality.
Although that generic may be okay, it’s probably best avoided for a few reasons. The main reason is that our members don’t have a lot of experience with that generic, and the little experience that we do have is not good. Another reason is that Aurobindo generic minocycline is made in India, and Indian pharmaceutical manufacturing facilities are not inspected as often by the FDA as those in the U.S.
I posted a message late last month that I believe you may find to be helpful:
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Mark,
In case you weren’t aware of it, Minocin is outrageously expensive. Because of that, you may find that your insurance refuses to cover it. Be prepared to spend at least $2400 per month — and that’s with a discount. Frankly, I don’t think it’s worth it.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Phil,
No I didn’t realize it was that expensive! I called CVS and they offer Zydus minocycline which is also from India with a number of recorded health and safety violations similar to Aurobindo. Their website lists a number of brands available to order but I am guessing only the cheapest generic will be covered. I think I need to make some more calls. I would of course rather stick to the brands recommended here.Hi Mark,
You may want to try Par generic brand . I just started AP and I’m feeling effects already . They are a NJ pharmaceutical company and are tablets. I went with these because I was told minocycline can cause acid reflux and felt they would be easier on the stomach. I got mine from CVS , they can order them for you if you ask them to . Good luck
4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHMHi Mark,
Their website lists a number of brands available to order but I am guessing only the cheapest generic will be covered.
That may not be the case. It probably depends on the insurance company more than anything.
There is a specific question you need to ask when talking with someone at a pharmacy about generic minocycline. After asking them which generic minocycline they normally stock and if they can get any others, ask them this question: “What about minocycline tablets?” Of course, you don’t need to ask that question if they’ve already told you. However, I have found that people working at pharmacies usually will not offer that information unless they are asked.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein
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