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April 2010 – I start my Minocin protocol this week. I'm kinda on my own cuz my doc doesn't really know anything about this protocol nor does she believe in it (I coerced her into the prescription after reading The New Arthritis Cure.) She prescribed me 100 mg 2x day, but I've adjusted that to 100mg, 1x day, MWF (the pills are 100mg, so I cannot break them into 50mg 2x day, which would be my preference according to what I?ve read here on the BB). I got the original Minocin and paid $579 USD ? YIKES!
I?m anxious to dig into this bulletin board as there is much I need to learn, for example:
– Is the protocol I've put myself on (100mg, 1x day, MWF) OK for me? I was diagnosed with RA 5 years ago. Was on Plaquinil with moderate success until a few months ago when things move to a new and worse stage. I'd categorize my symptoms as moderate (not advanced or severe). New flare sites, plus widespread pain and exhaustion. No nodules, though.
– Is there a cheaper place to buy brand Minocin? I'm willing to pay, if it's going to work, but $579 a pop is CRAZY!
– Since my doc is not well versed in this nor does she believe in this therapy, what test should I ask for and what should be monitored while on this therapy. I had baseline tests done a week ago. Next test should be in X months?
-What is the best OTC NSAID. I'm currently taking Alieve 2x day. I also take anti-inflammatory supplements, but need to check what others have taken.:DUPDATE 5-7-10 – Another doc just gave me meloxicam (I hurt my ankle in an accident and it's swollen)…anyway this is for inflammation and I read folks use it for RA. Has anyone taken meloxicam and tell me how it's worked for them?
– Interested in learning more about fasting for pain/inflamma relief.
– What about drinking wine/alcohol with Minocyn? I don't drink every day, but on special occassions.
Those are just a few things I'd like to learn more about.
I'm also not opposed to finding a new doc, but the list of docs that Road Back sent to me was … questionable. They were all alternative types, which I've had back luck with in the past. I?d like to find a Rhumy or Family Doc in the Washington DC area that is well versed in this protocol. I don't feel comfortable trying to manage this disease protocol on my own, even with the book and this site as guidance.Carrie, your post has been moved to the General Discussion area of the forum from the Personal Progress threads in order for others to respond. The Personal Progress threads are for personal use only and are not set to generate responses. Thank you and welcome to the RBF forum. 🙂
Hi Carrie,
I'm not sure that there is a “best” OTC NSAID– there appears to be some individual variability that comes into play. However, I read that ibuprofen is probably the safest.
Why did you stop taking Plaquenil? Was it because of side effects, or some other reason?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Carrie,
Welcome to the board & good for you wanting to try this treatment method, that shows courage & forward thinking in itself. 😉
I am sure there will be many people here than can help you with all your questions (I can certainly relate to that I used to think of myself as the stupid question Queen!). If the minocin you have is in tablet form you can get a tablet cutter to 1/2 the pill.
Good luck,
Maz – AustDec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Carrie – welcome to Road Back!
<span style="font-size:3] – Is there a cheaper place to buy brand[/size%;”> Minocin? I'm willing to pay, if it's going to work, but $579 a pop is CRAZY!
Alot of people buy their minocin from online Canadian Pharmacy http://www.buylowdrugs.com with no problem at all. If you type that into the search function above, alot of posts and detail about this option will come up.
Your starting regime: Sounds like you have started on a good regime – 100mg MWF. In fact that was not obnly my starting regime, that was my regime for 5 years. However, if you turn out to be one of the hyper-sensitive people (herxing unbearable), then you can pull back from that to a lower dose and should still see results.
AP Docs: There is also a list for the U.S. that comprises the more experienced AP Docs – generally good to have if you are prepared to travel. Lynnie [/size]
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)Hi, Thanks for your feedback. The Plaquinil stopped working and 2) caused some intestinal issues. (sorry if TMI). Plus I think it was damaging my hearing.
Thanks, Maz. Unfortunately the pill is a capsule with granules in it. Hope it's the right formulation. I sure paid enough for it!
Thank you, [user=30]lynnie_sydney[/user],
I will certainly check that website out for cheaper Minocin.
Hi! I am on a very low dose of prednisone 2mg. …so that helps me with inflammation. But my dr also has me taking 4000mg of fish oil. It is a natural antiinflammatory. If I dont take it I definitely see the difference. You may want to give it a try. I was taking 2000mg for 2 yrs but my dr said that was not enough and bumped it to 4000mg. I dont take any other antiinflammatory. I also take plaquinil. Dont think it works for me…..but my dr insists i take it for the rest of my life as long as no side effects results. I have been on that for 8+ years. Did your dr have you on a stomach protector when you were taking plaquinil?? For example, zantac or prilosec??? Also, I am on the generic minocin….global brand. I have responded very well to it. Super cheap too!!! I have been on this for 6-7 mths….and responded well to it after only 2mths. I did it very slow. 100mg for the first month then one week at a time I would introduce another 100mg to MWF. I dont think i ever herxed and if i did it was very mild. It really has helped taking probiotics and milk thistle….I highly encourage that!!!! There were some probiotics i liked and others my body hated. I have found great success with solar ray acidopholus 2x daily and GNC 50 bill 2x a day. No bloating either!!! Some of the other brands caused extreme bloating for me! Lots of luck ….take it slow!!!!
I take generic minocycline and it seems to be working great for me.. Maz had said some of the companies are ok for generic…TEVA being one and mine is TEVA. You might just check into the generic with those companies Maz suggested in a previous post if you have any problems getting the brand Minocin at a cheaper rate.
[user=2256]Carrie-RA[/user] wrote:
Thanks, Maz. Unfortunately the pill is a capsule with granules in it. Hope it's the right formulation. I sure paid enough for it!
Hi Carrie,
I think you may have been replying to the other Maz, but as she lives in Australia, she may not know how to answer this, so thought to chime in for her. Hope you don't mind Maz!
Yes, the pelletized version of Minocin in the pea green capsules (one transluscent end so you can see the pellets), made by Wyeth and distributed through Triax here in the US, is the correct formulation. Just going by the price you paid, you got the right version! 😉
If you decide to order through buylow in Canada, then the Wyeth brand is made by Stiefel and it comes in a two-toned indigo and orange capsule. For 100 caps, it is about $165.00 US and these can also be ordered in 50mg or 100mg caps. They also do a powdered version, so when making an online order, I was always careful to say, “100mg Stiefel Minocin (pelleted capsules only).” They always got the order right and it was delivered within 2 to 3 weeks from faxing the order and script to them. They also recommend calling an hour or so after faxing to ensure the fax was received. Additionally, they told me that if the doc is willing, then to write the script for 100 caps, because then the order will come in the manufacturer's original sealed bottle and won't have to split…safer for sending in the mail in the tamper-proof bottle.
As Peach mentioned, too, others here have used generic minocycline and have done well on that, too…the ones getting the thumbs up around here are made by TEVA and Watson.
Hope this helps?
Peace, Maz
Carrie, My doctor is in Fairfax and she is a rheumatologist who is devoted to infectious causes to RA. She is a true medical detective and I strongly recommend her. Please send me a private message if you would like her name and number.
I would die to live closer to her, but I happily travel 7 hrs roundtrip for my visits with my doctor. She is a modern day Dr Brown if ever there was one.
Susan
My son just had his first visit with the doctor in Fairfax and we have been very happy. It was a very thorough first appointment and they have already called to send him for MRI's to investigate the shoulder joints. He is only 18 and having his first ever bout with arthritis– though I have a huge family history. It's pretty scary and upsetting, but I feel like they know what they are doing. He's already on doxy–just by chance he started doxy in Feb for acne. So we are keeping up with that. The vitamins and supplements they ordered include some anti-inlammatories, fish oil, and probiotics that are really helping him to tolerate the doxy. He's also on 75 mg of arthrotec a day. We're going to go for the MRIs and then back for the second visit/diagnostic discussion.
So far, they seem to know what they are doing and seem to be investigating every angle. My guess is that it is a reactive arthritis, that's what everybody else in the family has… but we'll wait to see.
-Mary
[user=27]Maz[/user] wrote:
Hi Carrie,
I think you may have been replying to the other Maz, but as she lives in Australia, she may not know how to answer this, so thought to chime in for her. Hope you don't mind Maz!
Peace, Maz
I don't mind at all (you know better than to think I would..;))
To Carrie & anyone else who doesn't know,
Maz (volunteer & guru of all RB & AP stuff) has been here for a long long time. However, when I joined in May 08 I didn't know & my own nickname is also Maz — that's why I always sign my name Maz-Aust so people will hopefully know which one they are talking to.Maz-Aust
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Edited to delete 2nd post (yes I did it again, double posted!)
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
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