Here is a link I thought might be of interest to some of you.
It is an Ask the Expert from Johns Hopkins Arthritis Center.
http://www.hopkins-arthritis.org/ask-the-expert/index.php?
Thanks for the link!
MaryB, I use the activity monitor from this site. In fact I like this site a lot. The monitor has been so useful and my RD charts it. It's intersting to compare. I realize how much better I'm doing when I compare where I was even 3 months ago.
Joonie, thanks for posting this site. I use it but I just never thought about posting it. Glad to see someone is thinking and it's not me. Lindy
Well, the expert is an idiot about AP.
Did I say that? Oh, yes I did.
Question #1
I'll try to make this short. I am 52 and RA for also 10 years. Had to retire from nursing because of this. Also have fibromyalgia and asthma.
I have tried every drug that there is for RA. Nothing seems to work. trying to do antibiotic therpy now. Have been on doxycycline 100 mg. IV q day for 1 wk, and then every,other day for 2 weeks and minocycline 100mg QD for 2 weeks. RA factor is now 2670 and sed rate 90. Have gone up since on rx. I have Kaiser for seniors ins. In my area there are not many dr. I can see. The last one's nurse said that until I could afford the meds. that the dr. prescribed there is not much hope. So my PC is taking care of me and he doesn't really know what to do next.Is there a web site that he can go too to talk with someone.At least he is trying to take the time to help me. Can you help with my problem.
Thank you,
The antibiotics minocycline (minocin) and doxycycline have been well researched and have been shown to be only slightly effective (at most) for RA. Their use has for RA has dropped considerably since the new drugs for RA have been approved. I would strongly urge you to try to see a rheumatologist. Your medication history sounds complex. Distinguishing RA from fibromyalgia pain is very difficult, even for a rheumatologist. Your PC using a website is no substitute. Becoming involved in a clinical trial of a new drug might be a way of getting access to medication.
Question # 4
Are there any follow up trials or ongoing research into the use of tetracyclines antibioctics such as Minocycline for Rhuematoid Arthritis? Several studies were done in 1990's & Minocycline is used as a DMARD for RA by some Rheumatologists in the USA & UK, yet i could find no reference to it on your drug information?
You are right that several international studies showed that minocycline was modestly effective in mild RA. In the "real world", the success of the drug was very low and thus with the advent of better drugs, no one bothers with it anymore.
Question # 5
Do you recommend Antibiotic Therapy for RA? I am currently on Remicade infusions every 6 wks and 15mg of Methotrexate a week, & 2.5mg of Prednisone, 400mg of Plaqunil a day. I am beginning to feel relief from the infusions (I have had 4 total) but I am still very tired and I keep getting sore throats....not sure why. I can walk much better than I was able to walk a few months ago. Do you think I should explore the Antibiotic therapy or just stick with what I am currently doing and possibly be able to get off of some the my current medications in the near furture?
Answer: Unless you have a suspected bacterial infection, there is no role for antibiotics in the treatment for RA. This has been looked at extensively over the years. The NIH did a large study looking at both aggressive antibiotic treatments and looking for infection within swollen joints using PCR. There was no evidence for infection. Antibiotics minocycline and doxycycline have been looked at in many controlled trials. There may be a slight benefit from long term use of these antibiotics, but certainly these therapies do not rival the newer biologic treatments
Question # 6 - Where's Lev, he'd appreciate this!
Why do you guys ignore the NIH study that proved in a placebo controlled trial minocycline was far more effective than placebo for RA? There is also a correlation w RA and an animal model with the microbe mycoplasma.
Dont patients have a right to know this? On your page the reasearch is funded by drug companies, could that be why?
Answer: This forum has acknowledged on numerous occasions that minocycline has been extensively studied in human RA and has a modest benefit in the clinical trials. However, minocycline is not as effective as the newer biologic agents and is overall disappointing when used in our regular patients. The NIH did a large study in early human RA looking for a microbe that might cause RA using biopsies and cultures and PCR. The study failed to show a link with mycoplama or any other infection. Animal models do not replicate human RA.
We also acknowledge that pharmaceutical companies help to fund this site and we work hard to maintain editorial independence. All funds are unrestricted and there is absolutely no input from the companies as to topic or content. We wish that there were other means to support our site so any contributions are welcome.
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No, let me revise my earlier statement. The expert is criminal.
Pip
As stated earlier I found the site useful for my specific needs. Don't let me or Pip influence you, look at the site and make up your own minds. Apparently, it doesn't interest or work for some but it might for others. I think that all sites that have information regarding auto immune diseases deserve a look and review and then you can make up your own mind if it's something that is helpful to you or of no interest. LindyLindy,
No slam at you or others. Just in AP circles the Big Dogs of traditional med - John Hopkins and Mayo - well, let's just say they are into 'business as usual'. I'd known 'of' it because of the testamonials on rheumatic.org - just hadn't really believed it. And I should have - you've all seen what I had to go thru at a top notch major research hospital.
I was going to go thru and make corrections in a different color ink.
Pip
Hi Pip, I know you weren't slamming anyone. I just believe that people need to make up their own minds about sites and information based on what their needs are. I'm not out to refute any site or anyone's opinion. I just want people to do research and learn all there is about the disease/s that they're being treated for. If the site is good, bad, or indifferent at least read it and make up your own mind. Gotta go to bed, LindyI have never really been to that website, just googled and found it as I was looking for a possible answer to someones question. And found that they had a lot of answers, by a professional, to questions that I know have been asked on here recently. I was just supplying newbies with more insight to help them understand their questions.
tks joonie,,,,very helpful link for newbies as well sr. members....never enough knowledge....looking for relief from neck pain roseI am not making myself clear - as usual.
It's not that their website is or isn't helpful - it may very well be. Frankly, I never got that far because I was so upset when I looked up ABX. I honestly thought there would only be a blurb as it 'works as a DMARD' like on the ACR web site - I did NOT expect this. Lin has mentioned the activity monitor and I'm sure the have info on diet etc - all tailored to the traditional AI disease approach. I have no problem with all that.
Like Lin, I've been harping on the need for us to research and make informed decisions on any aspect of our care - from our treatment options to lifestyle options like diet and exercise.
But when a well known and respected hospital publishes something so misleading and error filled - what chance does the person first looking into AP have of making an informed decision.
My first problem in Question 1 is - what well researched? Yes, there landmark double blind studies but we APer's keep saying we want more research - like, in my case, if only to prove AP works on severe RA. To tell a woman who says every drug has failed that her best option is to wait for clinical trials on a new drug is 'criminal'. What was that woman supposed to do until then? And I've sent a bunch of docs to the Roadback. Most probably don't do much - but if somebody somewhere learns about this and helps us with it - do we care if their knowledge started at a website?
Question #4 - This doc totally skips the info on the famed MIRA trials and the follow-ups like O'Dell. He insinuates that studies were done 'internationally' (but not in the good ole USA) because of Americans standard belief that we have the best healthcare around. (Please, of course as we've all found out - that is not true - but that statement pumps that idea). He says 'modest' success (as good as MTX, safer etc totally ignored) but when better drugs (biologics) came along 'no one bothers with it anymore". That is the most 'dissing, pooh-poohing' statement I've ever seen. Much better than anything I've heard from docs trying to get AP.
Question # 5 - I have no idea what large NIH study he is talking about - and frankly, would love to read it myself. He had better not be talking about the 1971 Boston study that involved only 13 people and sealed the fate of looking into the infection connection for 30 years. If he is - I'm going to John Hopkins myself just to smack him. My modest success on AP makes that possible. No, it can't be that because PCR wasn't around then. Does anybody know what study he's talking about?
And that doozy on # 6 - numerous occasions - only 6 answers on Mino was found in the archives. 'Animal models do not replicate human RA' - yet how many times do we see a study that says such and such in mice (or whatever) will lead to therapies in humans. This guy is cherry picking. Anyhow - number 6 is called 'reframing the arguement' - accused by somebody of caving into drug company ad revenue - he admits it and asks for handouts.
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All I was trying to say is - as a newbie, going to a respected hospital web site and looking up Antibiotic Therapy - how would you interpret the my first post? How motivated would you be to look further into AP?
Not very,
Pip
I was looking at this site and as well as noticing the answers on AP I alsoOh, girl! You're one step ahead of me. Keep us posted.
Pip
Damn,
Here' too more websites with 'erroneous' AP info that Lynn posted on AF. We can't win for losing.
http://www.healthtalk.com/rheumatoidarthritis/askthedoctor/0 80706.cfm
This Dr. Chadra has the ACR response rates way wrong.
And - http://www.webmd.com/search/search_results/default.aspx?quer y=minocin&sourceType=undefined
While the WebMed stuff has a lot wrong with it, for the most part it's a lot better than JH or healthtalk! Just the usual scare tactics on SLE (stop the drug and it goes away) and skin discoloration. Sheesh. Like I want to feel that pain again. Most people say they looked tanned.
Pip
0r Blue....kind of like a smurf???
Peace & Love...Neasy
Lynn - can't say blue would be as exciting as tan, but I think that's the Scleroderma people.
Pip
Lynn - did you turn blue when you were on AP?