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Hi,
My name is Anne-Marie and I am new to roadback. I have managed to persuade my consultant and GP to back me in my quest for AP. I saw my GP today and as all my bloods have come back normal he is going to prescribe for me. I have a choice of monocycline or Doxy he says. I make him aware of NO substitutions and he tells me Doxy is generic in its own right so offered me vibromycin. I am sooooooooooo confused as what is the correct medication to start with as I dont want to get it wrong. I kinda ruled out mino because of side effects but as for the other two I dont know. Can anyone shed any light on this for me. Any input would be most appreciated. :headbang:
Hi Anne-Marie,
Vibramycin is a brand name of Doxycycline:
http://www.medicinenet.com/doxycycline/article.htmI think the general consensus here is that the generic vs. brand issue is not as big of an issue for doxy as it is for mino.
Todd
Todd,
Thanku so much for that link I found it most informative. I will start the AP tomorrow with the Vibromycin that the Doc prescribed for me today. MWF 100mg once daily. 😉
Hi Ann Marie,
Just popping by to add a hello and welcome to Todd's! 😀 Nice to meet you and look forward to you joining us as you start your road back.
This is by the by, but before I met my hubby at college in Nottingham, I had a boyfriend from Barlaston, Stoke-on-Trent, in Staffs. What a lovely county you live in!
All the best starting your doxy…if you don't mind me asking, what side-effects were worrying you about mino in particular?
Peace, Maz
Hi Maz/
Thanku for the warm welcome. Small world huh? I used to have a boyfriend from Barlaston too. It is a nice place. You asked me my concerns about Mino? Well I couldn't cope with grey skin discolouration but am also afraid of drug induced Lupus. I believe but am not sure that Mino is surpposed to be more effective that doxy. I am still very new to this and have read loads of testimonies on this site but have only yesterday joined or even looked at the bulletin board. I still have loads of reading on here to do.
Strange thing happened last night, I think I hit an emotional wall. I think maybe something to do with two and half year loss of myself due to PRA and the prospect of getting better. I cant really explain it, my feelings and thoughts are odd to say the least.:?
Hi Anne- Marie. Welcome. Just wanted to let you know that my diagnosis was PRA – which I first started getting 22 years ago! My bloodwork was normal too for quite some time after symptoms started…..then about two years later, they started to reflect the condition and my RF shot up. 5 years ago I started on Minomycin (Australian brand name) and was pretty symptom free in less than a year. My testimonial is on the website, which I'm sure you'll get to. I am currently trialling a diferent combo of abx as I wanted to see what may still be lurking, even though my symptoms had gone – my RF went from 692 to 300 but then stalled. I had textbook results from the mino, pulse dosed MWF at 100mg and absolutely no problems with it except for an initial week or two of nausea when I started and a classic herxheimer reaction for 6 weeks in total. I would highly recommend it. There is a very good AP doc in the South East of the UK and Maz will send you his details if you want to consult with him. katieb on this Board has had great results through this doc for her severe RA. Best to you and welcome again. Lynnie
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)[user=1218]Anne-Marie[/user] wrote:
I used to have a boyfriend from Barlaston too.
You asked me my concerns about Mino? Well I couldn't cope with grey skin discolouration but am also afraid of drug induced Lupus. I believe but am not sure that Mino is surpposed to be more effective that doxy.
Strange thing happened last night, I think I hit an emotional wall. I think maybe something to do with two and half year loss of myself due to PRA and the prospect of getting better. I cant really explain it, my feelings and thoughts are odd to say the least.:?
Hi Anne-Marie,
Hey, maybe it was the same guy we dated…now that really would be a small world! :roll-laugh: This was way back in the late 70s/early 80s, though, and you may be much younger than me.
If this helps, the hyperpigmentation that can happen occurs more often with daily dosers, but can be reversed when mino is stopped and a rotation is made to another tetracycline. Vit C taken daily is also thought to help the body metabolize these iron deposits in the skin, too. I'm a pulse doser and take daily Vit C and haven't had any probs yet, after over one year on mino. Anyone who gets the mino tan is actually quite pleased, as it literally looks like you have been on vacation in the sun. Last summer, I'd never been so brown, as I have quite fair skin. If you're working with an open doc, it's quite easy to just change over to doxy for a period of time and then go back to the mino later.
Minocycline is a later second generation tetracycline and came out in 1979. It's believed to have better tissue penetrability. Minocycline-induced Lupus (MIL) is relatively rare, too, affecting about 1 in 10000 in the population who takes it. I know of two Lupus patients who actually take mino…one an old-timer and one a new APer who recently just saw Dr T in Boston. Dr T ran the MIRA trials and apparently he just told this new APer that MIL was “old hat” and not as much as a concern anymore. If this new APer sees this, perhaps he would kindly pop in here to confirm this for you. 😉
Of course, if this is still a concern for you, then doxy is effective, too. All the tetracyclines have a tendency to cause some sun-sensitivity and hyperpigmentation, though, especially if you are out in the sun a lot. I was on tetracycline for a year before I started mino and I got brown patches (like large, conjoined freckles) on my forearms through the summer months. These always fade during winter. In England, it shouldn't be too much of a concern, though, unless you're having a particularly good summer, go on vacation somewhere hot and sunny or just a sun-lover in general. This can be averted by avoiding the sun, covering up, using a good strong sun block, hat, etc.
Sounds like we've been unwell for the same amount of time, Anne-Marie. I got Lyme disease (very prevalent here in New England) and, in addition the usual early stage symptoms of Lyme, I started with PRA-like attacks, which were excruciating and debilitating. Within two months, these PRA episodes quickly morphed into all out RA in every joint of my body, including my jaw. All I could do was lie in bed or on the sofa with all my limbs propped on pillows for months. I saw no end in sight until I saw my doc who gave me a lot of hope. In some ways, that was when I began to let my guard down and felt I no longer had to fight alone and someone was going to be there to help see me through…someone who believed he could get me well again. Depression hit hard around that time, because I think I relaxed a bit and everything I'd repressed came flooding out…in some ways a bit of relief mixed in.
The herxing can be a challenge in the beginning, but you'll have friends here to support you through. Not everyone herxes, but when it does happen, it can still be a confusing time. The people here got me through in the beginning as well as re-reading (oh, I'd say about 5 times!) The New Arthritis Breakthrough. The hope in that book was such a gift.
To say I was so bad in the beginning and now leading an almost normal life again (my knees have taken a beating) with pain-free days is a miracle. We've got a few PRAers here, including our wonderful Lynnie, so you won't be alone when you need to compare notes.
Hang in there Ann-Marie…these diseases aren't easy at any time, but there is much hope with AP. If you'd like the name of the doc in Guildford, let me know and I'd be happy to pass his contact info along to you. He actually came over to the US to train under one of Dr Brown's colleagues (just as Dr Brown was retiring due to his ill health). Sometimes not having to “fight the establishment” takes a bit of the angst away, too…just knowing you have someone knowledgable about AP on your side.
Peace, Maz
Maz,
Thanku for the information. I thought it was a slate grey colour skin went with mino. Nice and brown huh? Sounds a little more appealing. As for the Doc in Guilldford, I have his contact details from another forum. My GP is liasing with him regarding treatment. I didn't realise he trained under Dr. Brown himself. I should be in safe hands then.
On reading more of the site I realise that I may get candida type problems, what should I take to combat this and at what dose? Can anybody help? 🙂
[user=1218]Anne-Marie[/user] wrote:
Thanku for the information. I thought it was a slate grey colour skin went with mino. Nice and brown huh? Sounds a little more appealing. As for the Doc in Guilldford, I have his contact details from another forum. My GP is liasing with him regarding treatment. I didn't realise he trained under Dr. Brown himself. I should be in safe hands then.
On reading more of the site I realise that I may get candida type problems, what should I take to combat this and at what dose? Can anybody help? 🙂
Hi Anne-Marie,
There seems to be different kinds of hyperpigmentation that people report here. Some get blue marks that look a little like bruises under the skin or small freckles. Others get an overall tanned look, which becomes more pronounced as a deep tan when a person has been out in the sun…it's been dubbed, “The California tan” by some participants here. I guess the “hue” will depend on what shade a person's skin is start with. I'm fair and just went very brown in the summer. As mentioned above, I got the grey/brown freckle patches on my forearms from tetracycline, which weren't all that visible when I was tanned in the summer, but more noticeable when my tan faded…these eventually faded during the winter months.
It seems to be the blue/gray spots and bruise-like marks that people get concerned about. Not too bad if they appear out of sight, but if it occurs on the face it's a more obvious concern. For very sick people for whom mino is the optimal choice, most just accept this as a nuisance factor. For others, they might switch out to doxy for a while until the spots/bruises fade again. Again, though, this blue/gray hyperpigmentation is normally more of an issue for people who have been on mino for longer periods and/or who daily dose on the Harvard Protocol (100mg twice a day every day). When pulse dosing, it's less likely because the doses are so much smaller. I take 1000mg of Vit C every day and haven't had any probs with this yet, but everyone is unique.
All the tetracyclines can cause a brownish tartar around the gumline, but this can be removed at dental hygiene appts. The tetracyclines are used by dentists to help gum disease, so they're aware of this…it's harmless and can be cleaned off. You don't often hear of actual tooth darkening in adults and seems to happen more for kids under 8 when they're big teeth are developing. This is why kids under that age usually avoid the 'cyclines' and pregnant Mums can't take this class of antibiotics. It probably can occur in adults, too…just haven't heard it mentioned or if it has been, I missed it. Maybe a few others will come in to share their experiences if this has happened to them. I have veneers on the 4 top teeth, so it's not a concern for me, although I do get the brown tartar and can confirm that it does come off.
For candida prevention, a quality probiotic supplement is a daily staple for APers. Probiotics help prevent candida, but can't cure it once it kicks in. So getting started on probiotics as early as possible helps, as well as sugar-avoidance in the diet. There are other natural supplements out there that people take to keep the candida overgrowth down. I take grapefruit seed extract drops in vegetable juice every day (it's strong tasting), but others may use olive leaf supps…there may be other supps that people use they can share. These supps can be quite powerful and I found going low and slow with them helped. Die-off from candida is like a herx, in and of itself, and can cause fatigue and aches and pains. If candida becomes a problem, though, AP docs “in the know” will prescribe a systemic or a washthrough…the names over here might be different from the UK, but Diflucan or Lamisil are common systemics and Nystatin is an oral and gut washthrough. In individual cases, some AP docs will prescribe a pulse of a systemic or washthrough with their protocol. The systemics can be hard on the liver, though, so regular bloodwork needs to be done to monitor liver function.
How great that you have Dr H consulting with your doc who is helping you! Sounds like you're all set to go. 🙂 That's great news!!!
Peace, Maz
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