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chennai01
08-03-2006, 08:47 AM
I have been reading some info. lately that antibiotics have been used successfully for Rheumatoid arhtritis. Basically they are taken at low dose for 3 days a week and this is not enough to develop a resistance to these drugs. The effectiveness of this treatment has been backed up by some scientific studies.

Here is some information:

http://rheumatic.org/

http://www.roadback.org/index.cfm/fuseaction/studies.sub/subgroup_id/16.html

Given that PA is generally considered less severe than RA, is this a reasonable treatment option? Where can I find a doctor who adminsters this?

JesseLou
08-03-2006, 10:02 AM
It seems that most anything that affects your immune system will affect your PA. For me, though, antibiotics have no affect that I can discern. Viruses will keep me PA free for as long as I have them. Bacterial stuff, like food poisoning will give me a flare, but not until I'm getting better. Surgery will also cause a flare, but also not until healing has begun.

You might be able to find a naturopath who is also an MD who would give you antibiotics. Anything that won't kill you is probably worth one try.

Dulane
08-03-2006, 11:00 AM
Too bad Dr Heng isn't in your area. What about going to a derm and asking?

I mean, most of us have a few spots to point to.

Did you ever have rheumy?

:confused:

chennai01
08-03-2006, 11:02 AM
Yes, but he is very conventional and had me on enbrel (and heavily pushed me to add methotrexate). He was not very receptive to alternative approaches and glossed over my concerns about the serious side-effects of the drugs.

CalamityJane
08-06-2006, 10:28 PM
Anybody heard of Doxicycline as treatment for PPP, for somebody who has osteoarthritis?

Any info appreciated.

RichJ
08-07-2006, 02:02 PM
hi jane,
sorry i never tried it but i can bump you to the top. maybe some will come through and help you on your ?

have a good night all

richard

CalamityJane
08-07-2006, 07:27 PM
hi jane,
sorry i never tried it but i can bump you to the top. maybe some will come through and help you on your ?

have a good night all

richard

Thanks very much Rich--that'd be great! :) Really appreciate it......

RichJ
08-08-2006, 12:48 PM
hi calamityjane,
i just figure that starting a thread more people will see it and help with your ?
heres a link to it. i hope it works.
http://www.psoriasis.org/forum/showthread.php?p=249668#post249668

have a good day all

richard

grannyfranny
08-08-2006, 12:51 PM
Hi Jane, I have never taken Doxicycline but, as you know, I take Keflex for pppp. I think,,,,I don't have as much pain as I use too and I'm not as stiff in the AM. I don't know what the difference is in these two drugs.

Maybe someone else will see this.

LadyHawke9973
08-08-2006, 01:12 PM
I'm sorry Jane, I don't have PPPP and so haven't researched much into it. Here's hoping someone else can assist.

Have you done a google on the drug name and PPPP at the same time?

raydon14yp
08-08-2006, 01:16 PM
Doxicycline is the generic name for Vibramycin. It usually is prescribed as a once a day dose & it is an atibiotic.

ouchyk
08-08-2006, 01:40 PM
I have been reading some info. lately that antibiotics have been used successfully for Rheumatoid arhtritis. Basically they are taken at low dose for 3 days a week and this is not enough to develop a resistance to these drugs. The effectiveness of this treatment has been backed up by some scientific studies.

Here is some information:

http://rheumatic.org/

http://www.roadback.org/index.cfm/fuseaction/studies.sub/subgroup_id/16.html

Given that PA is generally considered less severe than RA, is this a reasonable treatment option? Where can I find a doctor who adminsters this?


Hi,

ASK YOUR RHEUMATOLOGIST!

I did minocycline for about 5 months for my PA, if you go to the arthritis foundation you will find it listed as a DMARD for early RA and not FDA approved. the reason it is used as it's thought to have anti-inflammatory properties. No other reason other than that according to my rheumatologist. It's also used as a treatment for acne, my daughter used it for a few years. And I'm happy to report that I had zero side effects from it. It also didn't work all that great but I was afriad of other medications. He doesn't think I have an infection and no one has thier blood tested more than me :p My doctor suggested it to me when I freaked out about bios and other dmads and flat out didn't want to take them.

Here are a few links to read;

http://www.arthritis.org/conditions/DrugGuide/chart_dmards.asp#Minocycline

http://www.arthritis.org/resources/arthritistoday/2006_archives/2006_05_06/on_call_p3.asp

Good luck!
Karen

chennai01
08-08-2006, 02:22 PM
I don't think many conventional rheumatoogists would go for it - as I believe there has been a decades long controversy about this form of treatment and the American College of Rheumatologists have traditionally frowned upon it. You must have been VERY persuasive with yours!

However, there has been some scientific studies supporting these treatments having efficacy, but to my knowledge (despite 50 years worth of knowing about this treatment approach) few large and long-term controlled studies have been done. Given the very low cost of these very common antibiotics (long past their patent expiration), the "reward" resulting from any such costly study would be far less than for a new designer biologic selling for $12,000-$24,000 per person per year.

I would like the NPF to also fund studies on this avenue (and others too) of treatment rather than only funding biologic studies.

The theory is not that this its an "anti-inflammatory" treatment in the sense that its a COX or LOX inhibitor/suppresssor, but rather that it kills bacterial infections within the joints that is causing the inflammatory process:

"Antibiotic therapy is based on the theory that inflammatory rheumatic diseases such as rheumatoid arthritis, scleroderma, lupus, juvenile rheumatoid arthritis, polymyositis, ankylosing spondylitis, etc. have an infectious cause such as mycoplasma and other bacterial L forms. Significant evidence supporting this theory has been published in medical literature for decades. The use of low dose antibiotics, particularly from the tetracycline or macrolide families, attack the disease process at its source, namely the infectious agent. In contrast to the treatment of ordinary, acute bacterial infections with faster growing bacteria, the bacterial forms which trigger the chronic infectious disease processes are much slower growing organisms; thus, the antibiotic protocols prescribed for treating the rheumatoid diseases are based on the use of long-term, low-dose antibiotics, usually given only three days per week - sometimes more frequently.

This therapy is equally effective in patients with severe and/or long-standing disease as it is in those with mild to moderate disease. Thomas McPherson Brown, M.D. (1906-1989), a well known rheumatologist who practiced in the Washington, D.C. area, pioneered this treatment over fifty years ago and successfully used it to treat over ten thousand patients during his lifetime.

In contrast, however, the toxic medications used by rheumatologists today in conventional therapy are prescribed to try and control or suppress symptoms rather than to eradicate the underlying bacterial infection, which is the root cause of the disease process. These more toxic drugs may or may not be effective. If they do work, it is only a matter of time before they either lose their effectiveness or the patient develops side effects, forcing him/her to discontinue usage of them. The patients often are left worse than before they ever started the medication."

http://rheumatic.org/faq.htm

ouchyk
08-08-2006, 03:11 PM
My rheumatologist is very mainstream with a lil of a bit of everything. It was HIS idea for the treatment not mine, I had never heard of it.

Being newly diagnosed I was scared to death as my PA is of an aggressive nature. He does not believe anything other than the minocycline having anti-inflammatory properties. I have read thier website and others like it. I tend to listen to not only my rheumatologists but others in the feild who study our disease who I know personally, I'm thankful that I have the opportunity to hear these doctors speak and even more so that some of them reside in my area. The method used by the other foundation is pretty much a blanket type of treatment for all rheumatic illness and perhaps they are onto something perhaps not. Certainly, they do have some small studies to back up what they use. The doctor who does that method happens to practice in Boston as well and he does not use this on all of his patients.

I'm not making a judgement one way or another but as with anything what works for one does not work for another and I was one it didn't work all that great for. I'm not willing to sustain further joint damage.

The NPF does not " fund " studies for biologics please look at this link.

http://www.psoriasis.org/research/grants/

If you go to www.psoriasis.org and look around perhaps you will get a better feel for the organization. OR if you have the opportunity to go to a national conference, a group meeting etc, you will understand the mechanism of the organization a bit better.

Good luck to you,
Karen

ouchyk
08-08-2006, 06:37 PM
If you had gone to the conference you would have seen the programs were wide and varied. With everything from alternatives to biologics.

The numbers that you are quoting for net assests are sad as far as alternatives are concerned 25 dollars is not much and I would love to know who donated it, I'd love to see more companies who tote thier vitamins, herbs etc, putting more money into the pie chart as it is lopsided.

When you apply for a grant different companies require varying protocol, I can assure you none of it has to do with pushing any one medication or treatment regiment. The NPF is very careful about this.

Take for instance PATH, subsidised by Abbott the makers of humira, they did a seminar for those who wanted to go for PA, they had everything about treating the ENTIRE person from PT, to diet, to mind and wellness. Not all pharma co's are about the medication themselves and strive to help us be all we can. Many of the folks that I had the pleasure of attending this conference don't take any medications and were looking for ways to help themselves.

You need to be careful to get the right information and not jump to conclusions.

I will ask the NPF to please inform it's members of what is what as there seems to be a total misunderstanding as far as some members of this board and pharma funding, some need to be informed as it continues to be evident that the relationship is not understood.

Also, you might want to take a minute to read this;

http://www.psoriasis.org/news/press/2006/20060403_ganeden.php

If the 5 million sufferer's ( or more ) of P and PA would send in one dollar each, can you imagine the great things that could be done? Why is it that we go to Capital Hill each year? To get monies for funding studies, without it we are sunk!

And as far as advocacy is concerned we go to ask about further funding, equal opportunities to those with insurance and those without. No one of us can direct the NIH where to have the monies used. It's not up to us to say where, its up to us to say PLEASE GIVE US OUR FAIR SHARE! And we are making great headway. If any one of the pharma co's would be willing to help me get to the hill financially I'd be thanking my lucky stars. I would be happy to go on any herbal dollar as well :) it's not inexpensive but to me worth every penny. I think as consumers that products that we use should be donating monies!

Back to anti-biotic treatment;

5 months is more than enough time for my physican to be able to tell me personally if the anti-biotic treatment was a success or failure and I'm not happy to report that it didn't work for me. I wanted it too, trust me! This doesn't mean it wont work for you. My sed rates continued to skyrocket and inflammation was very evident. I am one of those people who have red hot swollen joints when a medication isn't working, it also shows up in my bloodwork. Inflammation that is continual leads to joint damage and in some with aggressive PA it can happen quickly, thus the need for monitoring closely. In some people this damage can happen in as little as a year. It's probably not the norm, however it does and can happen. After a short amount of time my joints became better on Enbrel, less than 5 months, no red hot swelly stuff, just continual pain from tendons etc. And eventually enbrel pooped out.

To be honest I'm not as scared of ( some ) Biologics anymore, as a matter of fact I recently asked an area dr to allow me to go into a clinical, unfortunately for me I am disqualified due to other health issues and she was quite frank and I must admit right in saying she wouldn't want me to go without my biologic for three month washout because she knows me personally although she's not my rheum. and I probably wouldn't be able to walk.

I forgot my humira at the conference and the reps wouldn't give me a sample lol :p I always think geesh this stuff doesn't work but I can tell you after 5 days of being late, I can tell the difference BIG TIME and that is in conjunction with my all time favorite psoriatic heroin prednisone. That said, I also flare right thru it and it doesn't seem to be the perfect medication for me, so I continue to search and research until I can find where I am most comfortable.

Dr.Trentham ( sp ) in Boston is also a pioneer of that antibiotic protocol used and is well known for it. He also has patients on mainstream medications as well. I believe he may have worked with Dr.Brown or picked up where he left off, it's been a long time since I've read the protocol along with the research as I'm not interested as much but felt the need to post my personal experience.

What you might want to do if your rheumatologist is unwilling would be to go to the arthritis foundations link that I left for you and show him how a mainstream foundation has this as a dmard and perhaps he will rx it for you! Can't hurt to try right!

It didn't work for me, but I would not discourage others from trying it and I do hope that it will help you.

Karen

ouchyk
08-08-2006, 06:47 PM
ummm...lol...did I just answer a post that's now missing. :confused: I gotta go to bed :eek: .

chennai01 your post was a good one and brought up a ton of valid points I didn't find it offensive just a bit of misinformation and I think a lot of posters would benefit from reading it.


Karen