Generic Minocycline vs. Brand Minocin vs. Doxycycline

[CMS12]

Hi All – Thought I’d drop in with an update. Started back on brand Minocin on 2/12/16 at 100 mg x2 MWF. First week I felt better. Second week the bottom fell out and I’ve stayed there since. I was looking at a post I entered in October 2014 about my severe herx symptoms after securing Minocin the first time post generic Minocycline and I see I’m there again. Most of my days are bed ridden with very little ability to walk. I can get around very slowly and do take care of myself but I don’t leave the house much. Fortunately I have two wonderful daughters and a husband who help me a lot.

So today I was feeling really discouraged until I saw my entry in October 2014 and I could see I did get better on Minocin by last summer. I was walking the dog by last summer and doing yard work. Since I just started Minocin again about 5 weeks ago I expect it will be summer again before I’m doing better.

I’ll keep you posted. Cindy.

[PhilC]

Hi Cindy,

CMS12 wrote:

Started back on brand Minocin on 2/12/16 at 100 mg x2 MWF. First week I felt better. Second week the bottom fell out and I’ve stayed there since. I was looking at a post I entered in October 2014 about my severe herx symptoms after securing Minocin the first time post generic Minocycline and I see I’m there again. Most of my days are bed ridden with very little ability to walk.

I believe that you would probably feel much better if you were to spread your mino doses out more by taking 100 mg daily. By taking your Minocin the way you are, you’re actually making things harder on yourself than they need to be. Even though you are not taking it every day, when you do take it you are taking it twice in one day. That causes the concentration of minocycline in your blood to spike up to a higher level, which puts more stress on the bacteria. And that leads to stronger die-off reactions and more inflammation.

Are you under the care of an experienced AP doctor? If not, I recommend that you contact Dr. S. and ask for his input. If you don’t already have it, Maz or one of the other volunteers can provide you with his e-mail address.

Phil

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

[CMS12]

Hi Phil – Thanks for the input. I thought the dosing I’m taking is what Dr. McPherson-Brown recommended. I’m willing to try anything though. There is no doubt I’m herxing in a big way. I’ve never contacted Dr. S and no I’m not under guidance of AP Doctor. I’m in Denver and when I started on AP in 2008 there really weren’t any. Maybe there are now.

Any input from anybody is welcome. Thanks much. Cindy.

[jasregadoo]

Hi Cindy,

I just sent you a private message with some contact information for you. I don’t know that there are any really experienced doctors in Colorado, but I sent you Dr. S’s info, and what doctors there are in Colorado. I can send you doctors in Arizona or California if you’d like, but I suspect that would be expensive. Dr. S is the first stop I would make in your shoes.

Julie

[CMS12]

Hi All – I’m so discouraged. It baffles me that I have to go through this every time I am off pelleted Minocin for a few months. I am so sick. Every day is a struggle. I have so much trouble walking and that is new. I’ve always had severe symptoms in my upper extremities but for the most part my lower extremities other than my feet have been mostly spared although I did suffer from bakers’ cysts behind my knees early on. Anyway, I am so dysfunctional right now. Stairs are like an obstacle course. I do them but only after garnering enormous strength and determination and then I feel like I’ve run a marathon. I am tired….so tired of fighting this disease. I just want to get better. It’s been 3 months back on the Minocin 200 mg. MWF with no improvement to speak of. I do remember last time it took 6 months before I even saw a ray of sunshine so I’m trying to hang in there but I’m tired. Just so darn tired of being this sick. Thank you all for any insight or words of wisdom.

[CMS12]

One more thing. Should I go get steroid injections in my knees? They are the size of grapefruits. Don’t misunderstand me. I can’t open or squeeze bottles. I can’t reach overhead. I can’t do all of the things that RA causes limitations but I’m used to those I guess. I’m just tired of not being able to walk, dragging my legs, getting out of chairs, getting on and off the toilet, moving in bed. Sorry sounds like a pity party but I’m frustrated. I know I’ll get better as I did two times before but each time I go out of remission I’m worse than before. Any helpful thoughts and insights are welcome.

[jasregadoo]

Hi CMS12, as you know, we are all patients here, not doctors, so we’re only giving you our opinions. If I were in your shoes, I would contact Dr. S and see what he has to say, or else an experienced doctor in Colorado. I might give myself a week wash out with no Minocin, and then consider Phil’s suggestion of 100mg daily instead of 200mg MWF a try. I would get some prednisone for a burst. It is dangerous long term, but short term can give you great relief, and can let the Minocin in to do its job.

Of course you’re frustrated, this is a horrible situation you are in. You don’t sound like a pity party. Hang in there, but in my opinion, don’t continue to suffer if you don’t have to. And maybe you’ve tried talking to Dr. S, or maybe you’ve tried prednisone…your notes don’t say in this post. But those are my thoughts on how to hopefully get back on the road to recovery.

[PhilC]

Hi Cindy,

In the future, if you are forced to take generic mino, try to get Ranbaxy (or Torrent) capsules or tablets. I have seen more than one report of people doing better on Ranbaxy mino than Teva or Watson mino.

Since you have been on minocycline for so long, there is a possibility that it has lost some of its effectiveness. If that is the case, you may need to increase your dose, and/or add a second antibiotic (e.g., azithromycin, clarithromycin, or roxithromycin), or switch to a different antibiotic.

Getting corticosteroid injections in your knees seems like a good idea. The doctor may also be able to drain some fluid from your knees.

Phil

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

[CMS12]

Hi Jasregadoo – Thanks for responding. Yes I think I may try Phil C’s suggestion of 100 mg. daily. I know when I changed my dose last time it worked so that might be the ticket. I wish I’d bit the bullet and gone to Dr. S in 2008. I could email him but it seems like he doesn’t respond much anymore.

It’s funny because after I posted I realized I was just feeling particularly punk. I’ve never had this kind of knee involvement before which has made this particularly hard. I noticed last night after I posted that I can make fists with both hands which tells me I am improving albeit slowly. So I’ll just keep plugging along and try not to be a complainypants. Hard not to have complainy days with RA but for the most part I feel so very fortunate to have found Roadback all those years ago and have AP work for me. Anyway, thanks much and I’ll report in again soon. It seems with AP you just have to tough it out. The rewards are tremendous once it starts to work though.

[CMS12]

Hi Phil – Thanks for responding. Thanks for the tips on generic Minocycline. I hope that my significant symptoms aren’t from Minocin no longer working but it is possible. I’m only three months in right now so I’d like to give it six months before I give up and switch to something else. I remembered something that my be significant. I was declining and having a lot more symptoms while on the generic Watson but it wasn’t until I got back on Minocin in Feb. of this year that my knees ballooned up. Maybe that’s the die off.

I’m going to try dosing every day at 100 mg. instead of MWF 200 mg. I guess I could go all out and try everyday at 200 mg. What do you think?

[PhilC]

Hi Cindy,

CMS12 wrote:

I’m going to try dosing every day at 100 mg. instead of MWF 200 mg. I guess I could go all out and try everyday at 200 mg. What do you think?

An approach that some people have used is to stay at 200 mg MWF, but take 100 mg on all the other days. Once they’re comfortable with that, they might try increasing their dose to 200 mg every day. However, those taking 50 mg capsules or 100 mg tablets (which can be split), might try increasing their dose in smaller increments. As for how long to wait between dose increases, I usually wait at least four weeks after increasing my minocycline dose before I’ll try increasing it again. That is my personal preference, which has worked well for me (so far); however, someone whose illness lacks a significant inflammatory component might be able to tolerate a more aggressive approach (shorter intervals between dose increases).

I think it would be prudent to see your doctor and get his or her opinion on your condition. If your doctor agrees with your assessment that the recent worsening of your symptoms is likely due to “die-off” reactions, he or she might recommend lowering your dose (e.g., 100 mg/day). However, if your doctor believes that the recent worsening of your symptoms is due to some other cause, he or she might recommend increasing your dose, or even changing the medication you are taking (e.g., switch to another antibiotic, add a second antibiotic, add an NSAID or other anti-inflammatory agent, etc.).

Phil

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

[CMS12]

An update but first a refresher that is testimony to antibiotic therapy working.

I started on Minocin in April of 2009 at 200 mg MWF spilt dose. By December 2010 my rheumy told me I was in remission. Prior to the Minocin I had been in really bad shape with moderately to severe RA directing my every move. I stayed in remission on Minocin until I was switched to Teva generic in March of 2014. By September 2014 I was in bad shape again. I was able to get back on Minocin that month but I went back through the same process of recovery under antibiotic therapy and didn’t see any significant improvement until February 2015. I continued to improve that year until I again lost access to Minocin in the fall of 2015. I was switched to Watson. By February of 2016 I was again severely disabled. My doctor got my new insurer to approve Minocin and I took it from February of 2016 until I again lost it in June 2016 because Walgreens could no longer get it. Between February and June I was still going through Herx (if that was what it was) and only slowly improving. However, I was seeing improvement and by June was seeing a bit of light at the end of the tunnel. I was without Minocin all of June and early July so I took the Watson I had and declined. Then I received Torrent generic in lieu of Minocin from new insurer. It worked and I immediately started to improve after starting it early July. I am not back to remission but I’m worlds better. I now have Minocin again as my doctor demanded this for me and it was approved. I continue to improve everyday.

It is unbelievable to me that this treatment isn’t at least tried by everyone with RA. Although the last two years haven’t been much fun for me I have learned a lot and am filled with gratitude. It has proven to me unequivocally that antibiotic therapy works if you have the right antibiotic.

Thank you to everyone for your enouragement and guidance through the last two difficult years.

Cindy

[CMS12]

Another update – I have been taking Minocin since February 2016 other than the month I was out of Minocin last June. I also take the Torrent minocycline I got in July 2016. I alternate them. I notice Torrent seems to work just fine for me.

The last year has been further testimony AP works. Last April I could barely get out of bed. Now, I’m doing great. I don’t have the severe restrictions or fatigue but it took at least six months before I saw any significant improvement. It took another six months before my knee symptoms went away. So a whole year before I could say I was 75 percent back where I was after taking Watson for six months. As of today I still take a Celebrex most days and minocycline MWF 2 x day and one x a day on TThS. AP therapy is really the road back but it’s a long one with a lot of winding curves. It can also be quite scary at times but I’ve listened to my inner voice that says, “Stay the course.” Minocin did not stop working for me. I just had to go back through the whole process again of herxing, two steps forward and one back, and the fear I’d never get better….the long road back. I’m wiser now with all of you helping me. I know there are alternatives to Minocin THANK GOD since it is no longer available.

Stay strong those of you who are flaring. One year later RA is no longer the focus of my life. Thanks much to all the old timers who stick around to coach us. I hope I can be the example they are to those who are struggling.

Cindy

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