Some Lingering Questions

[Cangirl]

Just reading through previous posts and came across one thread about Apo-minocin. I live in Canada and that is what I have been taking, (100 mg MWF). I read that it is not good. I have had no adverse reactions to it but I don’t know if it is working or going to work.
It has just been two months and the main things that I have noticed, especially in the past 3 weeks, I have had blocks of days where I have great energy and feel really good and then everything comes back more sore and stiff than before. I have more soreness in my shoulders, knees and hands and now elbows, that I didn’t have before AP. I only had swelling in my first 2 knuckles on each hand and now I have it in my middle fingers. It has not stopped me from any daily activities, but it is not knowing what is normal that has me concerned.
Are these normal reactions to the minocin, working and moving the bacteria out? My fear is that it is not working and it’s the RA progressing.
Also, any direction on when is it good to increase dosage. Thanks, Kelee

[Maz]

@Cangirl wrote:

Just reading through previous posts and came across one thread about Apo-minocin. I live in Canada and that is what I have been taking, (100 mg MWF). I read that it is not good. I have had no adverse reactions to it but I don’t know if it is working or going to work.
It has just been two months and the main things that I have noticed, especially in the past 3 weeks, I have had blocks of days where I have great energy and feel really good and then everything comes back more sore and stiff than before. I have more soreness in my shoulders, knees and hands and now elbows, that I didn’t have before AP. I only had swelling in my first 2 knuckles on each hand and now I have it in my middle fingers. It has not stopped me from any daily activities, but it is not knowing what is normal that has me concerned.
Are these normal reactions to the minocin, working and moving the bacteria out? My fear is that it is not working and it’s the RA progressing.
Also, any direction on when is it good to increase dosage. Thanks, Kelee

Hi Kelee,

What you’re describing perfectly is the three-step fwd and two-step back dance that most patients experience and share here after starting AP and this sort of pattern continues right through to remission. What we normally tell folks is that it is the long-term trend in improvements that you’ll be watching for and this most often becomes apparent (when looking back) at about the 6 to 8 month mark. If no improvement is seen by this stage, then it is time to go back to the drawing board to determine if the protocol needs to be changed up in some way or further investigation needs to be done to check for things like chronic strep, candida, or other infections, like Lyme.

Two months, in the grand scheme of things, is still really early days. I had very severe, swift onset RA, and worsened significantly in the first three months and, after this point, the improvements were slow to come. Having my labs checked at regular intervals was a great support, as the decline in my disease markers really told me that I was improving, although some days it didn’t feel like it. Like you, though, over time, I began to notice longer stretches of days where I felt better. It was those days when I back-tracked that were the most unnerving. There is info on this in the Historical Protocol (section entitled: “First Signs of Improvement”) on the main site here, if you’re interested to learn more:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-First-44591

If you’re not using any form of immune-suppressant medication, then it’s also pertinent to know that flares can and do continue to occur until remission is reached. It’s just that over time, the APer should begin to notice that flares are becoming less frequent, less intense and shorter in duration. These periods, too, are pretty unnerving, but there is much that can be done to support the treatment during these times, such as learning about detoxification (how to rid the body of inflam and circulating antigen more swiftly), dietary offenders, hormone balancing, stress reduction, etc.

So, yes, in answer to your question, this pattern of to-ing and fro-ing is very normal and is exactly what RAers will describe, especially in their first year of treatment…though this pattern becomes less evident, or at least more spread out, as time goes on.

While we’re just patients here and unable to offer any advice on dosages or how to adjust protocols, while a person is still in the early stages of treatment, to change too much suddenly can precipitate new rounds of herxing, increased inflammation and the potential for growing hypersensitivity. So, the general rule of thumb is to keep things as steady as possible until about the 6 to 8 month mark when a good look back at progress (in terms of labs and symptoms) can provide good clues as to whether things need a bit of a tweak at that stage.

If you are using other medications, the picture may also be quite different if you are also trying to wean from these other drugs.

I hope this helps a bit, Kelee.

[Cangirl]

Thanks so much Maz! You always put my mind at ease! I keep a daily log so that I can keep track of what is happening. Also keeping track of blood work too as you had suggested previously! ALL your help is greatly appreciated!
Kelee

[DianaW13]

Hi Kelee,

I am in Canada also (Ottawa). I was originally taking brand name Minocin when I began AP (November 2011). I stocked up enough for several months worth before I ran out. My Minocin dose was 100mg MWF, then after several months I began 100mg daily. It was working wonders for me! When I ran out I replaced it with Apo Minocycline.

I tried the same dose- 100mg daily, however, found that it wasn’t as strong as the Minocin brand. I doubled it to 200mg daily and I have been doing just fine ( since October 2012).

All the best Kelee, hang in there – it really does work!

Diana

[Lynne G.SD]

Hi Kelee;
Gee,I have a beautiful dark calico cat with peridot green eyes with the same name.All I can say is that APO did not work for me and it was in the same colour capsule as Teva.I was not watching and after 6 months my SD was really coming back very quicly.Fractured teeth,hair loss,bone loss in my jaw and toes.I was freaking out and only then noticed that I was taking APO.After a few weeks on Teva things normalized but I am left with broken teeth and a much smaller mandible so my teeth don’t meet up to chew things.It was clearly written on my file…no APO… so I am not a happy camper.
I do know that you can get Teva through Jean Coutu pharmacy.I don’t live far from you so there must be such a pharmacy near you.
Lynne

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