Okay, so I've gone to two RD's both say I have RA and both feel that I
should go on MTX (10mgs). I have an appt. Monday with an AP Dr. and
imagine he will tell me to not take the MTX and only take an antibiotic.
My question is this....how do you not freak out about the potential
damage while waiting for the AP to work if you don't take the MTX in the
meantime?
Beats me. I'm on mtx while I'm on AP, and I STILL freak out about possible
damage. But any drug treatment you choose will not necessarily protect
you from damage---it's not just AP that has that problem. The only
difference with AP is it can be a lot slower than other drug regimes so it
takes longer to figure out it's not working.
When I was considering AP I kept looking for assurances that it would
work for me and I wouldn't sustain any more joint damage while on it, but
eventually I had to accept that no one can guarantee anything and I just
had to make a choice about what route I was going to take. Be very aware
of your body and keep up with your bloodwork and x-rays.
Also, you have the option of taking other drugs while waiting for the AP
to kick in. But I believe that will slow down how fast the AP will initially
work. Ask your AP doctor and good luck!
JB:
I went to two rheumatologists before seeng my AP rheumatologist, too. They wanted me on Enbrel, or one of the other biologics. If it makes you feel any better, Minocycline is an approved DMARD by the American College of Rheumatology. So it does stop damage, just like other DMARDs. In order to be labeled a DMARD, a drug must modify the disease process. Many RA drugs take months to kick in and become effective. Read up on some of the biologics, for example. So I'm not sure if you would have quicker results with another drug. My RA was caught early, so I was a quick responder to AP. That often seems the case with AP (recent onset RA responds more quickly). Within three months I was much improved (about 50%). If you are able, please read The New Arthritis Breakthrough By Scammell in order to really understand AP before seeing the AP doctor, it is available at Amazon.com for about , or you might find it at your local library. Also, if the pain is too much to handle in the first few months of AP, many people use steroid injections or Prednisone to lower inflamation in the beginning stages.
Until you get the book, it would be a good idea to read all of the scientific articles, clinical studies and case histories at rheumatic.org and roadback.org.
Take care, Karin
I was on mtx at the time they wanted me to start minocycline, but unfortunately had bad reaction, so I'm sure you can be on both at same time & it has done well for some, good luck!
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"Hypersensitivity/autoimmune states are infectious in origin; thus, suppression of the antigenic source causing the patient's hypersensitivity state is the focus and framework for treatment.
The treatment goal is direct suppression of antigen (in early disease) or suppression of antigen mimicry through tying up receptor sites (late disease / auto-immunity) with a dose of medication low enough to avoid exacerbation of the hypersensitivity state. "
http://www.roadback.org/index.cfm/fuseaction/education.displ ay/display_id/128.html
I am on Imuran and Enbril and I start AP on Monday. I have been following a program through Dr. Mercola's Optimal Wellness Clinic. www.mercola.com
I have been able to lower my Imuran from 200 mg a day to 100 and I am completely off of the Planquenil.
Thanks! I ordered the book a couple days ago, so I'm definitely going toHey, jbnole!
Another thing to think about is once a drug is approved by the FDA for any reason any doctor anywhere can prescribe it for any other condition. There is no reason to run Minocin thru the FDA approval process when it's secondary prescriptive value has been proved by at least some clinical trials. That costs a lot of money and were Amgen to incur those costs it would take away money spent on RA from it's more lucrative meds. Enbrel.
In answer to your first question - I prayed. Simple as that. I knew if I could take away the inflammation I could take away any chance of damage...still...I wasn't sure how long I could last with the pain. Once you can see it working, even in fits and starts, it's a lot easier to keep going on it. :-)
Try not to take the MTX is my advice. You have a better chance at being an early responder if you have not suppresses your immunesystem.
Pip
P.S. You're not in Oregon are you?
Wait until you see your AP dr. - he just might recommend a traditional med as well when he examines you. That is what happened with my daughter (although her age may have played a role). He said she could not wait to see if antibiotics would work. When I asked how we would know what was working, he said we wouldn't, but we didn't have a choice.
But then mtx made her too sick with infections (and her sedrate even went up, go figure) and the rest is history....
Edited to add - her mtx dose was 15 mg inj., if that gives you any perspective on her condition when we started AP. She was three at the time, less than 40 lbs.
Best wishes to you!
Hey, if you've seen any of my previous posts, I'm working on my 10th doc and 3 were rheumies that told me it didn't work. I wonder how many of their patients are doing as well as I am on AP. (Yep, that was a nasty jab at them - LOL). I have an AP doc I had to fly out of state for and I'm glad I did.
I'm glad you're in FL. There there are some good AP docs down your way. One woman I talked to loved her father/son team.
Pip
After doing some research, it appears the 'good' probiotics can be quite costly. I'm currently taking a rather inexpensive one, Rexall Brand Extra Strength Acidophilus with Bio Flora. Each capsule only contains 1 billion active Lactobacillus Acidophilus, and even though I'm taking 4 capsules a day, I KNOW I need to move up to a better brand with better coverage.
Just wondering if any of your insurance plans are footing part or all of the probiotic bill. Is there a prescription strength probiotic out there, one that insurance would cover?
I think I'll give my insurance company a call tomorrow and ask about probiotic coverage. I spoke with them today about Brand Minocin, and even though it's not on my insurance company's formulary, I can get it at the higher co-pay, which will still only be for a three month supply. YEAH!
Whoa! That's cool about the Mino!
Any of the flex plans will cover the probiotics.
Saw my AP doc today. He raised my diflucan to once a week and told me to do 3 probiotic caps AM and 3 PM instead of 4 per day knowing I was on 3.4 critters per cap now. So - I'm in the range.
Pip struggles to do math in her head - hasn't see stupid calculator since sometime in March! - so...what is that...12 of what you're taking? Or would that be 8 because you're not taking the diflucan? That would make me gag. There were some good pearls at Walmart but the closest to me in LA doesn't have that kind. Is there one near you? GoGo - jump in please - what has your research shown?
Did you see the correction about the olive oil. Sheesh. It was in the title! And, I swear it helps with the herx!
Pip
Okay, ladies, you are now speaking another language....explain the
Hey JB,
Probiotics have more than just acidophilos in them; ususally different strands of the good guys. Usually, with these diseases yogurt is not going to cut it so you need to really up your probiotic intake. In my case I've recently come out of denial and know I'm dealing with a bad case of systemic yeast. As I kill off the good guys the bad guys were getting stronger - especially as I was a complete moron and forgot my probiotics for 6 weeks. I was getting scared that AP was failing but it wasn't failing, it was my body getting totally out of whack due to no probiotics. I cannot stress enough how important they are.
I suggest getting the expensive ones at Whole Foods to start and slowly working in some of the inexpensive ones found at WalMart after you're sure AP is working. Many new APer's add supplements in and take things out -all at the same time - which makes it darn near impossible to figure out what is working and what isn't. But once you can tell AP is working you can tell what's slowing the process down and what's speeding it up. Capische?
As for the insurance - I have some suggestions. Every one of the 10 docs except 1 was willing to write the script for Mino but none were willing to monitor me. Well, technically I don't know yet if the last one was willing to monitor me as I gave up and moved out of state just when I met him.
Try looking on your insurance co's list and seeing if any of the docs are 'intergrative medicine' docs. These guys are into supplements and are not just Western med. The last doc I saw was IM and seemed intrigued about AP. They are much more likely to be willing to consult with your AP doc, IMHO.
Don't expect much from the rheumy - my experiences with them have not been pleasant and most did whatever they could to try and talk me out of AP. But, should you get one to work with you, eventually you may be able to make a 'believer' out of them.
Your best bet is the GP - especially if they've been your doc for a long time. If they saw you get sick and see you get better, they will be much more likely to consult with the AP doc.
As for the tests ordered - those AP docs do a LOT of testing. Usually this is good news because if one of the beasties swims into the vial then you have 'infection' and insurance will cover IV's. Of course the tests themselves are faulty but I did test positive for strep (big bad) but not c. pneumonia which I know I have as I've had walking pneumonia multiple times. My point is if your insurance won't cover the tests from another doc - I'd be trying like hell to get another doc to consult with the AP docs and who will agree to send the tests to the lab the AP docs use. God, I hope that made sense? I lived near a extremely well known University and they did not test for myco's - I had to use an out of state lab anyway. You want to use a lab that specializes in myco's. And Mayo sucks for this. Trust me because that's where the Great U was willing to send my blood - but not to the lab that did do myco's in our own state. Go figure.
Don't forget to ask whatever doc writes the script for DAW (dispense as written). You'll get the brand. The generic will also work but if you have stomach issues the brand is time released and much gentler on the stomach.
The antibioics have jumped up in price 350% since the start of '06. Hmmmm. For an off patent drug. My insurance is figting me (I want brand) so I send to Canada for it. PM me and I'll send you the name of the company I use. They're great.
And the above paragraph makes me really want to see Sicko.
Pip
P.S.
Have you been to www.roadback.org?
Hey Pip! I just wrote a medium depth post about probiotics on the"Damn, GoGo!
You rock!
Pip