Home Forums General Discussion First day on Minocycline

Viewing 14 posts - 1 through 14 (of 14 total)
  • Author
    Posts
  • #306474
    coralea
    Participant

    Today my specialist agreed to take me off Methotrxate and Hydrochoroquine and accepted that I was determined to try AP. She prescribed 100mg per day for first 3 months and said I should take once a day with food. Can some one tell me if this is ok ?? She knew very litle about AP but said hey its your life and we can give it a go. I see that most start on 200 a day on empty stomach now somewhat confused ? Anyone out there offering some advice appreciated. I am sure if I started taking 200mg she would be ok to prescribe more in 6 weeks. Paid NZ $63 what a bargin if it works. I have had RA for 3 years. My Mother died at 62 from the side effects of drugs prescribed for RA and I was heading down that path. I have had a cough and bad sinuses for last 3 months, drugs helping the RA but my immune system shot to bits, had 3 bad infections in as many months. Any advice on taking other pain relief should I initally need it on Mino ?

    #362016
    matv
    Participant

    Hi coralea, welcome to roadback.. πŸ™‚

    As I understand it, the dosage varied depending on your tolerance/herx reactions. Most RAers go M W F, 100mg BID.

    I’ve heard mino can be taken with or without food as long as the food doesn’t have calcium or iron in it… But mino is better absorbed and breaks down passed the stomach in the small intestine.. I take doxycycline, it’s got a less absorption rate and has a higher chance of upsetting the stomach. I also go M W F BID but i haven’t been officially diagnosed. (they only know im autoimmune).

    Most scleroderma patients will use 100mg BID everyday.

    Dosage is important but other antibiotics may be needed if nothing happens, you like clyndimicin.

    I’m sure other more experienced members will chime in, but if you’re concerned, watch your reactions the next few weeks.. If you feel horrible, I then you may be herxing and may need to pull back dosage. I remember reading how some patients need to go 50mg once a month until they can tolerate it.

    Brand name for minocycline tends to be important too. Some who use generic have no problem, but generic brand differs.. I’m using teva-doxycycline and it’s working well.. πŸ™‚

    I’m sorry to hear about your mother, I’m glad to hear your doc is open to AP therapy.. Most aren’t..AP therapy works for things like asthma as well, there’s pushing on the net about how people want to use it to “cure” their bad asthma.. It seems most autoimmune conditions are linked to mycoplasms in a way! It’s not for everyone but it’s definitely worth a try.

    I’m excited for your journey. πŸ™‚
    Goodluck!

    #362015
    Marybeth
    Participant

    Hi Coralea,
    I am about as new to AP as you are so this is not advice just what I am doing. I was diagnosed with RA 3 1/2 yrs. ago. Started out with MTX and eventually switched over to Cimzia with good results. Was concerned with the long term effects and went off medication along with starting a Paleo diet. I am on a host of supplements along with diet but have not seen results that I would like. I began to research AP, read The New Arthritis Breakthrough, read The Road Back Foundation web site and contacted my rheumatologist. Through this site I contacted Dr. S in regards to what I should begin with.

    I am starting my second week of minocycline (Teva) and I take 100mg twice a day. I eat breakfast and wait 2 hours before taking my dose. And 2 hours after dinner. I’ve had one flu like symptom. If you have trouble taking minocycline on an empty stomach, you can take it with food, it is just not absorbed as well. When I first started minocycline I did feel light headed but that stopped after a few days.

    Since your rheumatologist is not well versed on AP, I suggest you read The New Arthritis Breakthrough and the website. My rheumatologist is open to AP but has not explored it with RA. He knew of Dr. Brown and his work.

    I too have a chronic cough and constant sinus drainage. Sometimes I think it is getting better and then there are days when I think not. Too early to see if the antibiotic helps.

    Hope this helps.
    Marybeth

    #362014
    Patricia.Ann
    Participant

    Hi Coralea πŸ™‚

    Nice to ‘meet’ you. I have been on AP since September last year. I started off taking 50mg twice a week then upping my dose until I was on 100mg MWF. Last month (February) I hadn’t seen very much change in my symptoms so I emailed Dr S in Iowa (volunteer Doc) and he said that he routinely puts his patients on 100mg twice a day every day of the week so I am slowly working my way up to that!!! I think the reason we with an inflammatory component to our illness don’t go on those higher doses at first is because we can be sensitive to the drugs and the higher doses may cause some side effects as the toxins are released. Best to start off slow and work up in my opinion and then we won’t give up on the treatment plan πŸ˜‰

    I do the same as Marybeth. Have my breakfast, wait two hours,take the antibiotic, wait another two hours, then have lunch. Also hope you are taking some good probiotics to stop the possibility of candida. I take Prescript Assist soil based probiotic and PB8 for life from Vitacost. Best to take more than the recommended amount though.

    My Rheumatologist is not well versed in AP either but is happy for me to give it a try. I bought the book New Arthritis Breakthrough and read through lots of posts on the site. They were invaluable for picking up information.

    There are a lot of people on here who have had really good results with AP but it is not a short term fix and it make take a little while to see any results and when they come they may be subtle at first. For me, I am now trying to reduce my steroids from 10mg to 7.5mg. I have been on these at very high doses for nearly two years so to be able to reduce them some more is a positive thing. A sign perhaps that AP is working in a subtle way and as I up my dose my pain and swelling/stiffness may decrease. Here’s hoping πŸ™‚

    I do hope all goes well for you Coralea.

    Take care

    Patricia x

    #362013
    richie
    Participant

    Hi–If you are taking generic minocycline many doctors prefer you eat nothing for two hours before or two hours after —
    richie

    #362012
    myharmony
    Participant

    I take 100 mg twice a day of minocycline. At one point in time, I tried doxicycline, but this did not work for me. I started immediately on 100 mg twice a day and have had no side affects to speak of, except for some ‘blue coloring’ of my skin where I had fallen. I wait an hour after taking the medication in the morning before eating breakfast; and two hours after dinner before taking my 2nd dose. The antibiotic appears to be working after being diligent on taking it for 4 months. My CRP level and Sedimentation Rate are now normal, along with all my other bloodwork levels (the first time in 7 years!). πŸ˜€ I take a lot of supplements every day, some of which are: 10 grams of Vitamin C, 10,000 mg of D3, astaxanthin and resveratrol. Good luck to you! Kerry H.

    #362017
    PhilC
    Participant

    Hi Coralea,
    @coralea wrote:

    Today my specialist agreed to take me off Methotrxate and Hydrochoroquine and accepted that I was determined to try AP.

    It wasn’t necessary to discontinue your current meds in order to start on minocycline. Unless it was causing problems, you definitely could have stayed on the hydroxychloroquine. Many people on an AP end up adding it to their regimen in order to help control inflammation; since you were already on it, continuing to take it makes sense. As for methotrexate, that one could be dropped or the dose reduced (perhaps by half). Since you have been having problems with infections, I can see why you would want to get off of it. By the way, hydroxychloroquine is not an immunosuppressant, so it should not have increased your risk of getting infections.

    @coralea wrote:

    She prescribed 100mg per day for first 3 months and said I should take once a day with food. Can some one tell me if this is ok ??

    An appropriate starting dose for someone with RA is 100 mg MWF (not 100 mg bid MWF). Once that dose is well tolerated (which could take months), one could try increasing the dose to 100 mg every day. Some people increase the dose to 100 mg bid MWF instead, but from my point of view that doesn’t make as much sense if the target dose (i.e., the ultimate goal) is 100 mg bid every day.

    EDIT: Since a Herxheimer reaction may not occur until one has been on minocycline for several weeks, it would be prudent not to try increasing the dose unless one has been taking it for at least one month, and the same for any time the dose is increased.

    @coralea wrote:

    I see that most start on 200 a day on empty stomach now somewhat confused ?

    Minocycline can be taken with or without food. Food has only a small effect on the absorption of minocycline. However, one must not take antacids or mineral supplements within two hours of minocycline.

    @coralea wrote:

    Any advice on taking other pain relief should I initally need it on Mino ?

    Since you discontinued the methotrexate and hydroxychloroquine, you most likely will need additional medication to help keep inflammation under control. Consider talking to your doctor about giving you a prescription for an NSAID such as celecoxib (Celebrex), etodolac (Lodine) or nabumetone (Relafen). As of this moment, my preference is for nabumetone since it appears to be one of the safest NSAIDs.

    Note: People who are allergic to sulfa (sulfonamide) drugs should avoid taking celecoxib.

    Phil

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

    #362018
    matv
    Participant

    @PhilC wrote:

    An appropriate starting dose for someone with RA is 100 mg MWF (not 100 mg bid MWF).

    My apologies Phil and Coralea, I was going from what I’ve read via multiple websites / user testimonies. I’ll let the experts answer these types of questions from now on. Thanks for clearing it up! πŸ™‚

    -Mathew

    #362019
    Maz
    Keymaster

    @myharmony wrote:

    The antibiotic appears to be working after being diligent on taking it for 4 months. My CRP level and Sedimentation Rate are now normal, along with all my other bloodwork levels (the first time in 7 years!). πŸ˜€ I take a lot of supplements every day, some of which are: 10 grams of Vitamin C, 10,000 mg of D3, astaxanthin and resveratrol. Good luck to you! Kerry H.

    Hi Kerry!

    Nice to meet you and thanks for sharing your success on AP. Is it for RA?

    Four months to achieve remission in labs is an excellent response, especially after 7 years of disease! One of the issues with minocycline is that it can cause blue/gray hyperpigmentation and this is more likely in the higher daily doses. In one study I read out of UK, when biopsies were done on these benign skin patches, turned out they were high in iron, the cause of the discoloration. Maybe not so surprising in light of tetracycline’s ability to cleave to iron and other minerals in the blood. Once remission has been reached in labs and symptoms for a good period of time, some folk will gradually lower their dose to a long-term maintenance dose. Some stop altogether, but relapse is common. My guess is that if a person has been unwell for a period of years, then they can expect to be on the medication for equally as long and may prefer to remain on a low dose for life to prevent possible relapse.

    How are your other labs looking now or were you seronegative if you don’t mind me asking? Took me one year of heavy Lyme protocols and then a further 10 months on mino and azithromycin in low doses to achieve remission from all my labs. It was pretty sad, because I then developed drug-induced lupus from the mino and had to switch out to doxy (now tetra), which wasn’t as effective for me in the same low doses.

    Anyway, just didn’t want your first post and great news to go missing! Congrats and so lovely you joined us! πŸ™‚

    #362020
    coralea
    Participant

    πŸ˜€ Thank you for replying, now day 5 and apart from stiffness and a finger that wont bend I feel ok. Somehow I feel less toxic and I am sleeping really well. I am very excited about the possibility of staying off any anti inflams but I have them ready should I get worse. I have to drive alot for my work long distances sometimes so have to have good arms to travel the hardy terrain in NZ.

    #362021
    coralea
    Participant

    Just read all the replies…. great info and much to think about, thanks all for your time and thoughts brilliant !!!

    #362022
    mildred
    Participant

    Hi Coralea,

    I am new to AP as well and have just begun my minocycline dosage six weeks ago. I began very slowly compared to those replies I’ve read. Starting with one 50 mg once a week for (4) weeks, then 50 mg once a day MWF for four weeks. I am on my 2nd week of minocycline MWF. I take the minocycline on an empty stomach in the a.m. and the joint supplement on an empty stomach too. I am not in the medical field at all, but have studied my RA for the 20+ years i’ve had it. I am blessed to still be walking after all these years… and blessed to have uncovered the Antibiotic Protocol for rheumatoid arthritis.

    I made the decision to act on this myself and have read “The New Arthritis Breakthrough” once and reading it again as I experience the AP. I was taking Enbrel for 12 years but came off of it due to required surgery and decided after surgery to stay off it as I began my AP. I need to know where pain is and it’s intensity then I take actaminophen with codeine if needed. Though now maybe one a day. I am taking Omega 6 3X a day and a second joint supplement for collagen and joint support 2X a day. I am working with a doctor familiar with AP and am willing to go the distance and know my RA will be gone. I congratulate you on your discovery of AP and decision to act on your own behalf, now be as diligent in paying attention to stressfull people and situations around you as you make this journey. Be as focused on your subtle recovery as well.

    #362023
    Clairtonbear
    Participant

    Hi Coralea, I started Minocin yesterday. Dr. Said to start 50 mg but couldn’t split the capsule so took 100 mg. Oh Lordy woke up this morning with swelling in fingers, knees etc. Took a Naproxen 250 mg and got in a hot tub as I hurt all over. Don’t know if this is a herx but I’ll hold off till Monday before taking another. I’m determined to do this AP for RA. Got to get better.

    #362024
    PhilC
    Participant

    Hi,
    @Clairtonbear wrote:

    Hi Coralea, I started Minocin yesterday. Dr. Said to start 50 mg but couldn’t split the capsule so took 100 mg.

    You should inform your doctor about this problem. Perhaps he wrote the prescription wrong? Also, what is written on the capsules? There should be some letters and/or numbers on them.

    Phil

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

Viewing 14 posts - 1 through 14 (of 14 total)

You must be logged in to reply to this topic.