- This topic has 19 replies, 10 voices, and was last updated 15 years, 10 months ago by
.
-
Posts
-
I have been on Enbrel since 01/2003. These last three weeks have been a major pain. I am trying to start AP, but will not find out until 6/30 if that is possible. I am also trying to contact my PCP and ask if he will support me with Mino. My RA doc does blood test every quarter b/c of the MTX. If I start this my self with PCP blessing I will drop MTX. Does anyone have any other recomendations I am currently reading the book and I am about halfway through. I am not very familiar with alot of medical terms but I am getting nervous since my left wrist is all but fused. I wish everyday that I had found this site sooner.
Yes, Enbrel does stop working for some people. There have been some recent studies that show that switching to another biologic helps.
http://uk.reuters.com/article/healthNews/idUKCOL16817220070831?pageNumber=1
You can stay on the biologic while starting AP, then stop the biologic if AP starts working for you.
[user=480]prix560[/user] wrote:
If I start this my self with PCP blessing I will drop MTX. Does anyone have any other recomendations I am currently reading the book and I am about halfway through. I am not very familiar with alot of medical terms but I am getting nervous since my left wrist is all but fused. I wish everyday that I had found this site sooner.
Hi Prix,
This is just a patient-peer recommendation, but in your same shoes, I'd ask the doc for daily dosing of minocycline at the 100mg twice a day dose (known as The Harvard Protocol), rather than beginning immediately with pulsed AP dosing as described in the Scammell book.
The reasoning for this is that daily dosing with mino is said to afford greater immune suppression and, as you are thinking of dropping methotrexate (hopefully weaning off it over time rather than cold turkey?), this should help you to avoid a rebound effect. Later, when you've got some more stability with your condition and you're feeling better for a good period of time, you could then discuss pulsed doses with the help of your doctor to work a bit more at the infectious cause.
I think I'd also give the minocycline a month or two to kick in before slowly weaning off the methotrexate. 😉 Trying to come off it too quickly or too early after beginning mino could set you up for rebound flares and make your AP journey a bit more challenging to navigate.
Just my two cents, but others who have been in the same boat may have some first hand experience to share with you.
Peace, Maz
Hi there.
I can't comment on Enbrel (I haven't taken biologics). But I did just start the Minocin and AP. I am fully convinced that AP is the way to go!!! However, I think there is a learning curve. (Especially if you are new(er) to the protocol and feeling desperate to begin, as I was.) Maz is a wealth of knowledge (as are MANY other kind souls on this board.) As for the Methotrexate and going off it, dosing, etc….Her post above is great info. She makes great points (some of which I have recently learned the hard way:headbang:)
This is what happened to me. Just FYI:
I went off my MTX for two weeks cold turkey. (Not to be gutsy or stupid, I was told not to take it for fear I had an infection). I thought it would be the perfect opportunity to stop. However, after being off it for about 17 days I had a horrible flare. An AP doctor recommended I go back on it. I also had to take a bit of prednisone. I was feeling this was a terrible set back, and then I read in Scammel's book that Dr. Brown even used, rarely, prednisone when starting AP for some to control flare. I think that we can't shock our bodies. AP is great but if we are on the “big guns” already, our body can't be slammed by stopping cold. I would recommend weaning for sure. Just my opinion from my recent experience.
Hope you have great success with your AP.
Slow and Steady Wins the Race!
Amy
DX Rheumatoid Arthritis- 3/2008, Began AP 8/2008-continued various forms of AP through present. It's long and complicated- have a question re: my protocol, just ask 🙂
I'm with Maz, I wouldn't stop cold turkey on any of your meds. I've been on Enbrel, Remicade and Humira. Over time it's possible that we develop antibodies to these meds, Mtx is supposed to prevent this from happening. It does help to switch to a different biologic. Remicade worked better for me than Humira, but everyone is different. Good luck,
linda
Thank you all for all of your feed back. I spoke with my PCP today about prescribing mino incase Reumy does not on 6/30. He said he would want the protocol and a copy of my labs from the reumy. I just hope reumy will be open minded. I could not get an appointment with a semi AP doctor until 2/2009. With these latest flare ups I don't think that I could wait that long.
Can you travel? I went 2500 miles to see my AP doc and it was soooo worth it. And he usually can see people within 6 weeks.
Pip
P.S. Dr. F
Prix560,
Dr. R.K. is a PCP in Lufkin, TX and you can usually get an appointment with her within a few days. It's worth a try.
Request AP Dr. list from this board for your state and include TX as I think it may be an acceptable distance for you to travel.
Best wishes and happy healing.
Teresa
Prix, there is a private message for you (click on your new messages above right) with Dr RK's website and contact info in Lufkin, Texas.
Peace, Maz
Maz,
Could you point Prix560 and me to the testimonials where we can read Dr. R.K. posting? I have read it before but I thought Prix560 might be interested if she chooses to make an appointment with her in Lufkin, TX.
Thanks!
Teresa
Hi Teresa,
Did a search, but seem to remember Cheryl saying Dr RK's original link is now unavailable. Found this – is this the personal story that you meant?
http://www.rheumatic.org/rima.htm
Peace, Maz
Yep – that will do it.
Dr. R.K. is my AP Dr. When I was last there, she told me her mother was a Prima Ballerina in her younger days and this nasty arthritis took root in both her ankles. That broke my heart. But she also said she had asked her mother recently now that a number of years have past if they made the right choice to use AP and her mother said yes, it was the right choice. He mother had not been ill in over 20 years and I believe her mother is now 74 years old.
Here's to wishing we all make it to 74 and beyond living life to the fullest.
Teresa
The topic ‘ Does Enbrel stop working?’ is closed to new replies.