Starting Dosage, Too Low?

[Cangirl]

Hi:

Being new to RA and the AP therapy, I have a question to ask about Minocin dosage. My doctor is supporting me with the therapy but is not familiar with dosing, other than what I could briefly tell him. I provided him with lots of information in a package that I left with him, which I am hoping that he reads later, but in the mean time he has given me 50mg once a day M,W,F.
I am very fortunate to be only mildly affected at this point and the only medicine that I am taking is Celebrex. Although it keeps me functional, I know that it won’t work indefinately. I want to start the protcol correctly as this is a learning curve for
both my doctor and me. I want to be able to show him that it works!
Could anyone tell me if this is how they started and how well it worked?
Thanks,
Kelee

[Lynne G.SD]

Hi Kelee;
That is the right dose to start with for most diseases except SD.If you start high you risk a terrible Herx and just want to crawl into a hole and die.Been there,done that too many times when changing antibiotics.

[lynnie_sydney]

Hi Cangirl
The dose that you started on is fine for most people, although no two individuals are alike and dosing may need tweaking.
Suggest that you take some time to look around the information on our main site. I have pasted an extract below from the Historical Protocol section which may be of use. Please also read up on the Jarisch-Herxheimer (herx) response on the site and also in The New Arthritis Breakthrough by Henry Scammell – available through amazon and also now in kindle format. The more information you gather, the better you will know what to expect.

Less Severe, Early Disease (toc)

For patients with less severe or early disease, the IV or IM treatment may not be required as they experience the same result using oral medication exclusively. The optimum standard dosage for these patients is minocycline or doxycycline 100 mg. once daily, Monday, Wednesday and Friday or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Less-6296

Incidentally, you can work up to the 100mg MWF if you find the 50mg tolerable and that it doesnt produce too much herxing (i.e. so that you are able to continue to function). This is a low and slow road to greater wellbeing and patience is the key.

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)

[Clairtonbear]

Hello, I am new to this site and beginning Minocin tomorrow. My Dr. is starting me on 50 mg 4 days, 100 mg. 4 days, 200 mg 4 days then check kidney function. Problems with Biologic in the past and hoping for the best. Was on Minocin MWF 100 mg 8 yrs ago with remarkable results but was unable to get the treatment in this State until new Dr. came aboard. Anyone out there with similar startup?

[Maz]

@Clairtonbear wrote:

Hello, I am new to this site and beginning Minocin tomorrow. My Dr. is starting me on 50 mg 4 days, 100 mg. 4 days, 200 mg 4 days then check kidney function. Problems with Biologic in the past and hoping for the best. Was on Minocin MWF 100 mg 8 yrs ago with remarkable results but was unable to get the treatment in this State until new Dr. came aboard. Anyone out there with similar startup?

Hi Clairtonbear,

It’s nice to meet you and warm welcome! 🙂

Can you share with us the rheumatic disease with which you’re dealing?

It sounds like your doc is trying to get you up to the Harvard Protocol dose of 100mg minocycline twice daily and is just introducing it in increments to gauge any reaction in terms of early side-effects, although it’s strange he would want to run kidney function tests, because minocycline has renal-protective properties and is mostly metabolized in the gut and liver and just excreted by kidneys. In patients with renal impairment, there may be a greater risk of hepatoxicity, however (reduced clearance of mino by liver building to toxic levels likely due to inability of kidneys to excrete it swiftly enough?).

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

“Contrary to most other tetracycline antibiotics (doxycycline excluded), minocycline may be used in renal impairment,…”

Did your doc state why he’d need to check your kidney function so early after beginning therapy? Baseline testing prior to starting isn’t so uncommon, but a bit unusual so soon after starting (unless there is a specific kidney concern?).

Dosing can be largely dependent upon the degree of inflammation in a rheumatic. Too high a starting dose can produce a lot of herxing, which increases inflammation and may be intolerable. As you were on a biologic before, I’m thinking you must have either RA or PsA?

Such a shame you had to stop AP when you were having such great results before. Makes little sense in light of the fact that minocycline is an ACR approved DMARD for RA and any rheumy should be open to rxing it in light of this. 😕

http://www.rheumatology.org/practice/clinical/patients/medications/minocycline.asp

Hope it won’t be long until you’re back to doing well on mino again, Clairtonbear. Are you taking a daily probiotic spaced a good two hours well away from your abx dose?

[Marybeth]

Hi Cangirl,
When I began AP last year, I had mild RA (at bottom you can see my progression). I contacted Dr. S and he suggested I start with 200 mg of minocycline twice a day. After a couple of weeks I had a few dizzy spells but that all went away. My rheumatologist is not versed in AP but was willing to help me out. So basically I controlled how much minocycline to take and he did the blood test and asked me questions to gauge my day to day life. After about 4 months, I went down to 100 mg a day. And then 100 mg MWF. I did it according to my symptoms. I keep a log of my symptoms and what I eat. I never had any large herx’s that I can truly recall. I still have minor flares(every now and then) but only for a day and maybe not even that long. I read The New Arthritis Breakthrough and visit the discussion forum at least everyday to keep myself informed.
Everyone has different approaches and this was mine. You will get to yours too. Minocycline has helped me tremendously.

Marybeth

[Clairtonbear]

Thank you Maz for your quick reply. I have RA for 36 yrs. now. 7 yrs. ago my kidneys shut down and I underwent dialysis for 6 weeks before kidneys began functioning again. Dr’s believed due to ibuprofen and dehydration. After being on Cymzia for 7 mo’s I somehow got MRSA so went off for 8 mo’s. The 2nd try lung nodules increased in size after 8 mo’s Now the last 7 months I have been on prednisone 5 mg dropping down to 2 1/2 mg after a couple months. This drug made me hyper and had difficulty sleeping but did control the pain. Off prednisone 1 month and now having a major flare. Last night I took a prednisone to try to get some relief after reading posts it was ok to take with Minocin which I will start today. I am looking forward to getting back on AP after so many years and believe my new Dr. Is watching everything closely. My crp is 2. My other blood test are WNL. I will read the articles as I am baffled with the dosage. Thank you for the tip to take a probiotic after a couple hrs. as he did mention Minocin will kill off the good bacteria in the colon possibly allowing the bad bacteria to grow out. Again thank you for your concern. Not a fun illness with deformities hands, wrists and feet over the years.

[Maz]

@Clairtonbear wrote:

I will read the articles as I am baffled with the dosage. Thank you for the tip to take a probiotic after a couple hrs. as he did mention Minocin will kill off the good bacteria in the colon possibly allowing the bad bacteria to grow out. Again thank you for your concern. Not a fun illness with deformities hands, wrists and feet over the years.

Hi Clairtonbear,

Thanks for filling us in with the details – you have been through so much and my heart goes out to you. I hope it won’t be too long until the mino kicks in for you and gets you back on track. Makes very good sense now why your doc is checking and being vigilant about your kidney function.

Prednisone is such a devil drug, eh? Luring us in with its promise of pain relief, but not without great cost.

Your inflam level is relatively low with a CRP of 2. By some ref ranges, a CRP of 3-5 is still within “normal” or acceptable range, though a level of 0 is optimal, of course. This may bode well for you in terms of degree of herxing, as folks with greater amounts of inflam tend to herx more heavily. Usually folks with a lot of inflam will begin AP on a very low dose of, say, 50 or 100mg on a Mon, Wed or Fri (MWF) to start and to see how they respond. If herxing is going to occur, it can happen any time after starting to up to a month or two. As you’re still on pred, you may find your herxing is more bearable, if you do indeed experience herxing (some don’t). It is all a bit of a mystery and very individual, which is why the rule of thumb is to go “low and slow”…it’s sort of a mantra around here. Mino can also cause some early vestibular symptoms, too, like dizziness and nausea, so the lower the dose, the less likely this will be a problem, if experienced.

With probiotics, it’s important to use one (or even two types) with a good variety of strains and in a high enough dose….again, titrated to individual bowel tolerance. I have personally found PB8 vegetarian caps to be great and I take 4 or 5 times the daily recommended dose on the bottle. I also incorporate a second pharma-grade abx that is more expensive every couple of months that my doctor sells in his office. You’ll find folks here use all kinds of brands, so the best way to find what works is to just try one or two different brands that others have found to be good and see how you go. There are lots of past posts on probiotic brands if you run a search on the main forum page using the search engine.

Your doc is right that abx will disturb both good and bad bacteria in the gut…although tetracyclines in low doses are bacteriostatic (don’t kill bugs outright, just disable them and we need a functioning immune system for them to be killed). This is why probiotics are so important, because they will prevent candida overgrowth in the gut, but once it sets in, can be very hard to eradicate. Unforunately, long-term use of prednisone, NSAIDs, DMARDs, and biologics, also predisposes folks to candida-overgrowth. Any form of immune-suppression allows proliferation of bugs in the body, because the immune system is not fully up and running. Prednisone, in particular, alters cortisol levels in the body and, thus, disturbs sugar balance, which is why its long-term use can lead to diabetes and heart disease problems. So, it’s important to also be very careful about diet, ensuring to keep simple sugars off the menu that will feed candida.

There is a Dr. Brown video at the top of the discussion forum that has the starting doses that Brown used as a basic protocol for RAers at the very end of the video. You’ll also find info in the Historical Protocol on the main site that is really helpful, too:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

Hope this helps, Clairtobear. Wishing you all the very best as you get started on your AP again. We’re all here to hold one another’s hands, so you’ll find lots of friends and peer support here for all kinds of things to do with AP and things to support the therapy.

[Clairtonbear]

Wow you are so knowledgeable and I really appreciate your feedback. I just picked up my Minocin and the pills are in capsule form 100 mg (can’t be cut in half) so wondering if I should take every other day. He also gave me Naproxen 250 mg to take twice a day for inflammation. Probably wouldn’t hurt to stop prednisone since I only took 1 last night and start with Naproxen tomorrow. Amazing how the 1 pill worked like magic but I know evil drug. I bought Natures Bounty ultra strength advanced probiotic, says it has 20 billion live cultures so sounds like this will do the trick taking the recommended 2 pills. I’ll start this as well today waiting a couple hrs. The pharmacist said no calcium 2 hrs of taking Minocin. Now when I have a chance there is much for me to read. While on Prednison my sugar ran high 146. My last lung scan revealed Atherosclerosis which freaked me out. Dr. said caused by RA and inflammation. Cholesterol is low. After 2 weeks of stopping prednisone my sugar dropped to 78. Oh how excited I am to get back on track. Hate taking the toxic drugs, I hope you are in control and interested to know what meds you are on and how long you have had RA. Your message also gave me an eye opener with the sweets. Donuts and chocolate I love but will now eliminate. No wonder I’m such a mess but light at the end of the tunnel. Again thank you for your time and concern.

[lynnie_sydney]

I hope you are in control and interested to know what meds you are on and how long you have had RA.

Clairtonbear – many people who’ve been around here for a while have a summary of their situation in the signature (beneath each post). You can do this too. Simply go to your User Control Panel (above left) click on profile tab at top, then edit signature to the left, put a summary of your situation in there, click on submit. You can change these details any time by going through the same process 🙂

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)

[Maz]

@Clairtonbear wrote:

I just picked up my Minocin and the pills are in capsule form 100 mg (can’t be cut in half) so wondering if I should take every other day. He also gave me Naproxen 250 mg to take twice a day for inflammation. Probably wouldn’t hurt to stop prednisone since I only took 1 last night and start with Naproxen tomorrow. Amazing how the 1 pill worked like magic but I know evil drug. I bought Natures Bounty ultra strength advanced probiotic, says it has 20 billion live cultures so sounds like this will do the trick taking the recommended 2 pills. I’ll start this as well today waiting a couple hrs. The pharmacist said no calcium 2 hrs of taking Minocin. Now when I have a chance there is much for me to read. While on Prednison my sugar ran high 146. My last lung scan revealed Atherosclerosis which freaked me out. Dr. said caused by RA and inflammation. Cholesterol is low. After 2 weeks of stopping prednisone my sugar dropped to 78. Oh how excited I am to get back on track. Hate taking the toxic drugs, I hope you are in control and interested to know what meds you are on and how long you have had RA. Your message also gave me an eye opener with the sweets. Donuts and chocolate I love but will now eliminate. No wonder I’m such a mess but light at the end of the tunnel. Again thank you for your time and concern.

Hi Claritonbear,

Minocycline comes in either 50mg or 100mg caps and your doc may be open to re-writing your script for the 50mg caps if you ask and just say you’d like to start low and slow. Most docs aren’t aware of the herxheimer reaction that RAers tend to experience when starting treatment, which may be why they don’t think mino works – this early paradoxical worsening can look like disease progression when in fact it’s because mino is hitting the infectious target.

It’s really great you managed to get off the prednisone. Those last 5mgs can be a nightmare for anyone who has been on this drug for any extended length of time, because the adrenals atrophy and are unable to produce their own cortisone. So, it can take a lot of patience and time to wean off those last few mgs in tiny, tiny increments. How wonderful that your sugar levels have come down to normal again! There was a good discussion thread you might like to read that included a clip to Dr. Oz’s interview of two cardiologists who were discussing how sugar is the initiating culprit in creating systemic inflammation and heart disease – not cholesterol. Here is a link to this to watch, if interested:

http://www.doctoroz.com/episode/doctors-who-say-everything-you-know-about-cholesterol-wrong?video=16028

I’m with you, Clairtonbear – I used to hate taking so much as an Advil for a headache before all this began for me, too. While I’d rather not be taking anything, I decided early on that if tetracyclines were safe enough to give to kids for acne long-term, then they were safe enough (and the least of all evils) for my RA.

I’m doing really well with my RA, thank you so much for asking. It’s been a very long journey to wellness for me, because my RA was triggered by Lyme disease and other tick-borne infections in 2006 and it hit hard and fast. I have been on a number of different abx protocols, all of which had some effect in bringing me now close to remission. The critical key for me, however, was working with doctors who were well-versed in the treatments, supported me through the tough times, and also helped with immune and other adjunctive supports. I have been naughty and haven’t updated my Personal Progress thread in a while (see link in my signature line), so I should do that at some stage, but you can look through what treatments I have taken in the first few years of my RA/Lyme journey. The last post includes many of the detoxification strategies I’ve used to help reduce inflam and speed healing along. I will continue to keep using these methods – probably for life.

Lynnie posted some helpful info above for you in order to add a signature line, which will appear each time you post, so you don’t need to repeat your basic info each time. Adding a signature line can really help to generate responses, as it helps others to relate if they’ve had similar experiences. Just thought to mention that so you don’t miss it above. 😉

[Clairtonbear]

Thank You, I did the signature edit thing to list my meds. Much to learn!

[Clairtonbear]

I’m very curious. What is Lyme? Tic Bite? Sounds like a terrible thing.

[nomi]

Hi, I do not have an advice for the post, sorry but I am in a somewhat similar boat with you. My ANA Direct was Negative and doc said that was a good sign, that RA was still superficial. RR was 160 (norm <14) Sed rate 8. I just started minocycline 2 weeks ago, the day I started it, I started feeling better. 50mg EVERYDAY (I was kinda surprised, I thought it should be mwf) I had a bad flare due to the snow storm, but after the storm I am better. Stopped metho, plaquenil and prednisone (I was on my way to ween off of prednisone). currently still taking sulfa 1000mg a day/ doc said I can continue for a while. I also found out that I am hypothyroid, he said will give me the natural med for it next week. Should I be taking break from minocycline some days of the week? Also he said the AP protocol has worked on 30-40% of the patients that he get! First I was little worried to hear that, but deep down I was praying that would be me. I asked him if he need to test me for mycoplasma (I don't know if that is even possible) but he said no, cause I obviously have it that is why I got much better. I had a vaginal yeast infection even before I started the AP. It has been reoccuring, maybe 4 times a year. I am taking PB8 but as I read, I need to up it, was only taking 2 tabs a day. Would I have a bigger problem with the yeast infection since I am on antibiotics now? (I am going to ask this from the doc next week) or it shouldnt be a too much problem since the dosage isnt that much???

Thank you all 🙂

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