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  • #305050
    LorUK
    Participant

    Hello all

    Although I’m not currently taking Minocin, I’m seriously rethinking my current treatment for RA. I want to reduce & hopefully stop the toxic drugs I’m on.
    My question is, is there a particular brand is should look for in the UK? I can’t remember what I used to buy, I think it was Wyeth, but there were problems for chemists getting hold of it.

    Any info would be most helpful

    LorraineUK

    #353782
    Maz
    Keymaster

    @LorUK wrote:

    Hello all

    My question is, is there a particular brand is should look for in the UK? I can’t remember what I used to buy, I think it was Wyeth, but there were problems for chemists getting hold of it.

    Hi Lor…very nice to meet you, though sorry you had to re-seek us out.

    I’m not to ‘up’ on UK brands and generics, but there is a chap, Harald Weiss, who has an informative site with info (from 2007) on brand minocin and various minocycline generics. He’s included info on Minocin MR, which is licensed by Cynamid in the UK, if you scroll down to Point #4:

    http://www.tmgp.com/minocin.htm

    “4. Low-Cost Brand Name Minocin MR in England
    Minocin MR, available in Great Britain, also appears to be the real thing and can be purchased via mail order with a prescription. This Minocin is pelleted. The license for Minocin MR is held by Cyanamid of Great Britain Ltd, Fareham Road, Gosport, Hampshire, England. Minocin MR is manufactured by Lederle Laboratories in Pearl River, New York, USA and Fareham Road, Gosport, Hants. As of 12/8/07, cost was a very reasonable

    #353783
    LorUK
    Participant

    Hi Maz,

    Thank you so much for that info….. I remember now asking for Lederle.
    For a while before I stopped Minocin it was getting increasingly hard to find.

    As I said earlier, I’m hoping to shake up my whole treatment re the RA. It’s been a long 11yr struggle and for a while I just didn’t have the energy to keep fighting.
    However, I feel I can have another go, before I end up on TNF drugs (what my rheumy has offered me next)

    I’ll keep posting in the future

    Thanks again
    LorraineUK

    #353784
    Maz
    Keymaster

    @LorUK wrote:

    Hi Maz,

    I remember now asking for Lederle. For a while before I stopped Minocin it was getting increasingly hard to find.

    As I said earlier, I’m hoping to shake up my whole treatment re the RA. It’s been a long 11yr struggle and for a while I just didn’t have the energy to keep fighting.

    Lor, we’ll be here to support you as you have another go with AP. The good thing about AP is that it doesn’t have to be an “either/or” situation with regard to the drugs being used. Minocycline (see Dr T article in last eBulletin) can be used concomitantly with other RA meds. Many people find AP after being on other rheumatologic drugs for years and need to remain on them for a time, until their AP starts to kick in…then, they can gradually wean all else, one at a time.

    I think there has been some re-shaping of Brown’s approach over the years and his mode of treating. I’ve thought about this a lot and, if you get a chance to re-read the Scammell book, Brown talks about patients mostly coming to him with longstanding disease, when all else had failed, and they were suffering terrible side-effects from the drugs they had been on. These patients were admitted to his hospital clinic and remained there while he took them off their other drugs, initiated AP and could oversee the management of rebound and herxing. We don’t have this luxury today. Of course, if one adheres to infectious causes, then it makes no sense to suppress immune function and bacteriostatic abx, like the tetras, require a functioning immune system to reap the full effect of their antimicrobial properties…the abx don’t do the killing, the immune system does that with the tetras. So, in effect, while on immune-suppressive therapy, minocycline will largely act as just another DMARD, for its many immune-modulating props. Nevertheless, these are wonderful props! So, a good deal of benefit is still the had by being on minocycline while on other DMARDs or a biologic.

    Really just sharing this, because no one should feel exempt from trying AP, if they are on other medications for their rheumatic disease. It doesn’t have to be a mutually exclusive treatment and there are still great benefits to be had from the immune-modulating props of tetras, like minocycline. The great thing about this therapy and the longterm goal is that folk can and have gradually been able to reduce their other medications, coming completely off them in time. 😀

    Lor, I think you might like to read the story of Adrienne Purcell who had very longstanding RA and has managed to reach remission on antibiotic therapy and now just maintains a maintenace therapy. One of the important aspects of her treatment was to use IV clindamycin therapy, which provided a boost. Unfortunately, she had been unable to turn around the damage she already incurred prior to starting AP, but when we spoke she was now living a pretty pain-free life and had got her life back.

    https://www.roadback.org/emailblasts/ebulletin_winter09.html

    Dr. H, in Guildford, does IV clindamycin, if this is something you’re interested in following up on. If you need his contact info, just let us know.

    Btw, should mention that Lederle, the original manufacturer of pelleted brand name Minocin, no longer owns it…Wyeth purchased Minocin and gave distribution rights to various pharmaceuticals around the world…looks like Cynamid, in the UK, received this license from Wyeth? Hope you manage to find it, Lor…Ruth (Spacehoppa) in the UK may have already looked into this, if you PM her…or Lynnie, our Aussie volunteer, might know. 😉

    #353785
    spacehoppa
    Participant

    Hi lorraine,

    I’ve had terrible trouble getting hold of minocin in the UK myself. I currently use Acnamino MR and find it works very well for me. Must go as baby awake from nap, but let me know if I can be more help.

    Ruth

    #353786
    LorUK
    Participant

    Hi Ruth,

    Before I came off Minocin around Jan/Feb 08, I remember how difficult it was to get pelleted Minocin of any sort.

    I remember using Acnamino, can’t remember if it worked for me though….at the time I was building up to a really rough patch RA wise, which resulted in me coming off ABX altoghether.

    I’d love to hear more about your journey, seeing as we’re both in the UK. I’m seriously considering trying ABX again come the New Year.

    Take care
    Lorraine

    PS. do you pay privately for your Mino, or get it on the NHS?

    #353787
    spacehoppa
    Participant

    Hi Lorraine, You can watch my progress in rather tedious detail if you’re interested at http://www.youtube.com/ruthheasman. I decided to do a video blog of my road back as I figured it would be useful to remember what happened and might help others going through a similar thing.

    I am very lucky to have a kind GP and I get my mino and other drugs on an NHS prescription from him. I was actually diagnosed with Lyme disease by Dr D at the Breakspear Hospital in Hemel Hempstead. It was the best thing that could have happened really as I seem to need a combination of abx to really get the inflammation under control and the Lyme protocol calls for multiple abx.

    I am grateful for the abx every day as I am now in (a medicated) remission. I never came close to remission on the drug combinations I was on prior to the Lyme diagnosis, and in fact, the combination of methotrexate, steroids and humira was just making me sicker every time I took them. I was a bit of a shuffling wreck when I finally started this treatment. I had no balance, terribly inflamed joints, couldn’t think and could barely stand.

    What are your symptoms Lorraine? And have you ever considered getting tested for Lyme yourself? I was absolutely gobsmacked when my results came back highly positive. I knew I had been exposed to ticks, but it still surprised me to find that this could have been what had been causing my classic RA all these years. It’s really worth getting tested if you can afford it. It’s a big subject, so let me know if you would like a chat over the phone.

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