AP & Traditional Together? | Arthritis Information

After reading about AP, I decided it was definitely something I wanted to look into, as I'm about at the end of the line as far as biologics...I've been on Plaquenil, Methotrexate, Arava, Enbrel, Humira, Rituxan, and Remicade.

I asked my RD about antibiotic therapy during my last visit, and he said he's willing to work with me on it, but does not want me stopping biologic therapy until we gain better control of the disease. He gave me a prescription for Minocycline, 100 mg. to be taken twice daily, but is also starting me on Orencia next week.

I think I remember reading that someone here was doing antibiotic therapy in conjunction with traditional/biologic therapy, but can't remember who it was. I'm just wondering what biologic they are taking with their AP, and what their long term plan is.

I realize that true AP does not include biologics as part of the regimen, but for the time being, my RD will only help me with it if I continue the biologic. I'm sure if within the next few months we see some improvement, he'll let me do AP only. But since I just started the Minocycline, and will be starting Orencia for the first time next week, how will I be able to tell which one is working??

Also, I had been on oral Methotrexate for a little over 2 years, but was switched to Arava a few months ago because of GI problems. The Arava, however, has not been much better for my stomach, so he is now switching me to injectable Methotrexate. This just seems like WAY too many things to be taking at the same time, and I'm really kind of concerned.

Any thoughts??

Good luck with the AP therapy!!

Lots of people take like a dmard...a biologic...and something else for the ra all together. It is normal to worry about the amount of meds the docs are giving us.

Please keep us updated on how the AP therapy goes with the traditional meds.

Hi, Gale. It is common, and even recommended by some AP physicians, to begin AP with another DMARD or steroids. It is important to keep the inflammation down so the antibiotic can penetrate the tissue. Many people try to wean off of the other DMARD or steroid once the AP kicks in. Please see roadback. org, rheumatic.org, or rheumaticsupport.net for more information. I am sure there are articles on those boards about taking antibiotics along with other DMARDs. Also read The New Arthritis Breakthrough by Henry Scammell. It really is a must-read before beginning treatment, so you know what to expect. Feel free to e-mail me if you have any questions or just need support. Take care and God bless! ~Karin

Thanks Karin, I'm SURE there will be lot's of questions! And thanks for all the research info...I already ordered The New Arthritis Breakthrough. :)Hi Brisen,
I'm on Minocin (brand minocycline) and mtx and plaquenil (and fish oil). It
is a lot to be on but if all goes according to plan it will get less and less.
One thing that attracted me to AP is that it's the only RA therapy where
you take less drugs over time rather than more. My plan is to start
reducing my mtx and soon as I feel great on my maximum minocin dose.
I aimed for 200mg every Monday/Wednesday/Friday, but when I got to it I
found it was too much for me and so I've gone back down to 150mg
MWF, which I felt GREAT on the first time 'round, and am starting to feel
great again. So I don't know yet if the AP is working for my RA. But I do
know I have made a lot of improvement since I started it. My depression
has lifted, my brain fog has cleared somewhat, I'm having more good
days and I've even had some completely pain free days. Plus I think my
knee has healed enough I should be able to ride my bike again soon. I
believe it's helping!

I have some advice for you which is to take the time and make the effort
to really learn about AP therapy---it will super increase your odds for
success, I believe! Especially since you, like me, don't have and
experienced AP doctor. MY other piece of advice is to make sure you are
taking a really good probiotic about 3 hours after your minocycline.

There's a few other people on this board doing AP in conjunction to
biologics, and at least one AP purist who is an excellent source of
information (Pip!)

Good luck with your treatment!

GoGo - purist?!?!?! OK, maybe. LOL All I can say is it worked for me. As I've gotten better and better I can see how tweaking it makes sense.

Hey Brisen -

Did you get my email? AOL does not play well with others so if not, check your spam box. Sigh.

The only thing I think I didn't address in my email is - you might tentatively try the 200 Mgs daily that he prescribed - but that's the Harvard Protocol which is used mostly with Scleraderma patients. And Scleroderma patients don't usually herx. One of the theories for AP/AI diseases is that as we AI people are somehow more allergic to the myco's than other people. When they die they leave toxins in the body. Kill too many of the beasties in the beginnig and you'll get the herx (flare) from hell. The difference between a herx and a flare is that after a while you notice that the flare is 'dose related'. Take a Mino a couple hours later you get some sign - like rash, flare in a joint, etc. Mino lasts in the body something like 22 hours. When first starting AP I noticed I felt great on weekends - when the Mino was out of my system. Then I started feeling better on T and Th. Then all the time.

My point - sorry - I digress - there are a lot of people that stop AP because they get the herx from hell. I know of people that started at 25mgs a dose and worked their way up. Heck, GOGo is doing that by 50 mg increments.

So...just wondering how 200 mgs a day will work? Can people do it? Yes. And old school AP docs basically said "bite the bullet". But that was on the MWF protocol? See my worry?

Maybe you could just pulse (MWF). That way you save on co-pays too.

Anybody here do daily? Feel free to jump in?

Pip

Pip, I just checked my email and yes, it was in my spam box. I have just a couple more questions though. If I choose to do MWF, do I take the 200 mg at one time, or 100 mg twice daily? The reason I ask is because I'm already finding it difficult to time my twice daily dose around meals, vitamins/calcium supplements, dairy products, other meds, etc. I'm thinking once a day would be sooooo much easier.

Also, today is day three and I woke up this morning with much more pain in my knees, back, and hands. I've been extremely tired and shaky all day, and have spent most of it in bed. Can the herx start that fast?

Oh, and one more thing. Everything I've been reading says that Minocin is better absorbed than Minocycline. What is your opinion/experience?

Thanks guys!

I know your question is directed at Pip! but I'm a big butter inner.

Ah...welcome to the wonderful world of herx! Haha! I laugh at you, but
only because it's the pain that means there's a good chance AP will work
for you. That makes it the hurt that hurts so good!

But seriously, I was on 50mg MWF and I herxed on my 3rd day (SERIOUS
foot pain) AND I'm on major immunsuppresants, which theoretically
should impede a herx. In my completely unprofessional opinion 200mg a
day is way too much to start off with unless you enjoy pain, heart
palpitations, sleep disturnbances, headaches, temporary rashes, and
other delicious evidence of herxing.

The thing is, all the clinical studies have been done with the Harvard
Protocol dose, which is 200mg daily, so that's what doctors prescribe. But
I think for most people that's way too much, (they have a big herx,
everyone thinks it's a flare, they go off AP and then say it didn't work for
them). The more I researched AP the more I discovered less is more. The
ideal is to control the RA with the smallest dose of Minocin possible.

You will enoc**ter many conflicting opinions about this dosing issue, but
if you find you're in a lot of pain on your current dose, try easing off a bit
and see if you don't feel better in a few days. Most people have to
experiment a bit to find a dose that right for them. I have seen cases on
message boards where people can only tolerate 25mg MWF.

As to the timing of your meds, I have the same problem. It would really
be better (and less herxilicious) if you could continue taking it twice a
day. What I do is take one right when I wake up and skip breakfast. Then I
have an early lunch. Later, I take one one hour before bed. Do not lay
down within one hour of taking your minocycline. But it's easier for me
because I only take it 3 times a week.

However, if you take your minocycline with food you only lose 15%
efficiency, so that might be an acceptable trade off for you for the
convenience, especially if you stay on such a high dose. Sometimes I don't
have an empty stomach but I take the minocin anyway because at least
then I get 85% of it. Just make sure you don't take it with foods
containing calcium such as milk or brocolli. The minocycline with bind to
the calcium, rendering it less or ineffective.

I know this all seems complicated and confusing at first but once you get
the basics down it's really not. That's why even a general practicioner can
administer it successfully----it's quite a simple treatment. You'll see!enoc**ter= encounter...haha, tha AI board thought I was trying to say c u n t
and it censored me!

Hi, Gale. I take 200 mg MWF, as prescribed by my AP rheumatologist. I take it in the morning (on an empty stomach) because I take my probiotics at night. And my AP physician said to take it as far away from probiotics as possible. Otherwise you will waste the Micocin, killing off all that beneficial bacteria! You will also waste the probiotics because they will be killed by the antibiotics. My doctor said it is fine to take all 200 at once, which I do; but some people like to space it out so it is easier on the stomach.

Dosage really varies from person to person. So this is a difficult question. The more traditional protocol used by Brown was 200 mgs, M-W-F-- known as the Brown protocol. Dr. Trentham (of the MIRA study) did all of his research at 200 mgs per day, and this is known as the Harvard protocol. It is thought that at 200 mgs per day one will get more of an immunosuppressive/anti-inflammatory effect from the Mino. At 200 mgs M-W-F (also known as pulsing) it is thought you will be killing more microbes. The reason for that is the immune system needs to be able to step in and finish the fight, so to speak. Bacteriostatic antibiotics cannot kill mycoplasma alone, they need the immune system to help. It also gives the body a break on the off days.

For some people, even 200 mg M-W-F is too much in the beginning because they herx (die-off causing temporary worsening of symptoms) very badly (usually those who have had the disease many years). In those people, it is recommended they work their way up to 200 mg. They usually start at 50-100 mg M-W-F. And then work their way up to 200 mg (optimal dose) M-W-F . Herxing is thought to be good, because it means die off is occurring. But too much herxing is bad. We want to kill the microbes, not the patient.

You could always start on 200 M-W-F, and if that is too much for you, reduce it to 50 or 100 mg M-W-F, then work your way back up to 200 mg gradually.

If you can, take brand. If you can't, generic is okay. Here is an article on brand vs generic:

http://www.roadback.org/index.cfm/fuseaction/education.displ ay/display_id/120.html

Here is an article on the administration and dosages of the antibiotics:

http://www.roadback.org/index.cfm/fuseaction/education.displ ay/display_id/118.html

Hope this helps. Take care ~Karin

Gimpy, Are you losing some of your hair?
How much fish oil are you taking?
Thanks for all this information. I copied and pasted it so, I could refer to it later. My enbrel and MTX is working well right now but if it stops I am going to ask for AP therapy.

Dosage?

In about 1987, before I had heard of AP, a US rheumatologist suggested 200mg. of Mino to be taken at bedtime. This was for a borrelia infection that was causing arthritis among other things. The dosage was 1mg per pound of body weight.

We all lost a fine doctor, there is a tribute to him on the home page above my osteo page.

Ron

I'm thinking I will probably cut back to MWF. Primarily, because I'm feeling like crap, but also for the convenience and ease of fewer days to worry about dosing between meals, meds, and all the other considerations of Minocycline.

I will remain on the 200 mg. dose, but if my symptoms continue to worsen, I'll probably cut back to 100 mg. I'm going to give it at least a week or two at the 200 mg. dose though.

Thanks everyone. You guys are a source of inspiration, and I really appreciate the advice and encouragement you have given me. I can do this, I know I can!

Gale

Brisen39264.5808680556

Gale: You are so welcome.

I just take it first thing in the morning and then wait as close to two hours as possible before I eat. I know some people eat breakfast, wait two hours, take meds, then wait two hours before lunch. Either way, it is quite easy once you get into a routine.

Hang in there. It works if you work it

Take care and hope you are well soon! ~Karin

ThinkThin, yeah, I'm losing a bit of hair. I thought that would taper off but it hasn't. However, so far I'm the only one to notice.

I take 10,000 mg fish oil every day, equalling 3000mg combined EPA and DHA. I only use oil from the body of the fish and not the liver.

Hope this helps!

[QUOTE=Hermsi85]

Dosage?

We all lost a fine doctor, there is a tribute to him on the home page above my osteo page.

Ron

[/QUOTE]

Ron: Love your web page! I just checked it out. Although, I have to admit, your avatar creeps me out! Yuck! I remember about 9 years ago I had 7 or 8 of those little buggers on me.

Take care, Karin

Ron -

Have you been to the Lyme boards? What is it, lyme.net? A lot of that is real hard to kill without multiple ABX - so I've heard from other Lymies. Also, he said take it at night? Didn't a lot of people get GERD?

Gale -

Not blowing you off, I swear! LOL I blew out my router AGAIN (Stupid Verizon comes tomorrow). I do MWF 100 AM and 100 PM. I soooo wanted to do everyday but in AP - really, less is more. I have breakfast and tea with cream every morning so I wait the 2 hours then do the Mino then lunch. Sometimes things get in the way so I just take the Mino even tho it's too close to food or calcium. Sigh. Still worked for me. :-)

I wanted the Brand. I know the generic also works but I had some sort of odd belief that I had to do EXACTLY what Dr. Brown said or it wouldn't work. It did work and will work with the generic. But it was a real fear when this all started with me. Also, the Brand is gentler on the stomach and I had a history of stomach erosions. So my AP doc said 'take the Brand'.

More later,

Pip

Not to worry Pip, I know you're having 'puter problems. Karin and GoGo were able to answer my most pressing questions, and I've also been hanging out (lurking actually) on the RB board.

Today, for the first time, I took my 200mg. all at one time, around 9:30 am. About an hour later I came down with a horrendous headache, and still have it. I'm not sure if it's from the higher dose all at one time, or if it is just coincidental. Guess I'll find out Wed. when I take my next dose. If I find I get another headache, I guess I'll split it up like you do and take 100mg. in the AM and 100 mg. in the PM.

Like everyone has said, it's just going to take some tweaking until I find my groove. :)

Gale

Yeah, headaches can be a bear. But what if the next is a 'wrist flare' or something. Girl, you have MUCH more guts than me! I wanted the least amount of continous amt of ABX in my system.

Pip the chicken who is back on line! Write back!