Newly Diagnosed Looking for Encouragement

[pittRAlady]

I was recently diagnosed with RA. I have a positive RF of 18 and AntiCCP of 152. I was prescribed plaquenil and prednisone. What a nightmare. I have never been so sick in all my life. Which scares me because I am wondering if this is what my life is going to be like from now on. I am off all meds and recovering. I have some mild pain in my foot (esp if I go walking or try to exercise) and it comes and goes in hands. I have researched this and am inclined to travel to see a doctor based out of texas that has alot of experience with the AP. Other forums I have joined people tell me to go on Methotrate and a biologic. I am so afraid of what my future holds (mostly worried for my husband and 3 year old son). From this website, it sounds like even with AP, RA is a struggle most of time. Any advice or words of encouragement.

[m.]

From this website, it sounds like even with AP, RA is a struggle most of time.

This has not been my experience! Although I’m certainly not 100% pain free, and there have been some bumps along the way, overall I’m doing well, rarely take pain meds, and I live a normal active life—full time job, 2 kids, husband, house and a dog.

It’s been my observation that many of the people who are doing well on AP, tend to migrate away from the message boards & forums. If you get your life back, understandably, many want to spend their time doing other things.

I was lucky enough to get on Doxy soon after my initial flare and diagnosis. I was also lucky to have responded to the treatment relatively quickly. I still consider it remission, not a cure.

I can’t recommend the book The New Arthritis Breakthrough by Henry Scammell highly enough. It’s informative and up-lifting. I’ll confess to reading and re-reading parts of book time again.

I also traveled to see an experienced AP doctor, and it turned out to be a great decision for me.

Good luck!

[Joanne NJ]

Hi, to encourage you, I am also doing wonderful on AP. 😀 I did a round of AP back in 2010 and had to stop (long story), and went with no meds for over 2 years, I have a lot of hand and foot damage. But I got my act together and started again in November of 2013. I feel great, most days I forget I even have RA! My labs are normal and I feel like my old self before RA, hope this helps… Joanne

[Maz]

@pittRAlady wrote:

I am so afraid of what my future holds (mostly worried for my husband and 3 year old son). From this website, it sounds like even with AP, RA is a struggle most of time. Any advice or words of encouragement.

Hi pittRAlady,

Everything you’ve expressed here is probably exactly how we’ve all felt – scared, very little control over our destiny, and a medical system that on the whole doesn’t look for causes of rheumatic disease and just palliates it.

The thing to know about AP (antibiotic protocols) is that it’s not a quick fix and, as m. says above, while remission is very attainable on the treatment, one shouldn’t consider resting on their laurels and believing because they’re in remission they must be cured. It’s more complex than this, most of the time.

There is so much valuable info that is shared on this forum (search box to look up various topics is located at the top of the forum). It’s worth noting, however, that it’s a forum for people of all sorts of rheumatic diseases, with varying degrees of severity and some who arrive early in diagnosis and some who find the foundation much later on in their disease process. So, it’s not a good idea to compare one’s own story with another’s, but to just glean the golden nuggets that folks share here about their own return to health and to note that it’s (a) a long-term therapy with remission achievable on average within 2 to 5 years (as per Dr. Brown) and (b) that while it may be a straight line to wellness for some, others have to work at re-building their immune systems from a lot of damage (years of poor diet, damage from other drugs, chronic stress, hormone imbalances, toxic environmental exposures, etc). Although RAers have the same disease and we can learn much from the past experience of others in their treatment successes and failures, each person’s story is pretty unique. In my own case, I’m unable to tolerate tetracyclines, so I have had to alter my treatment course along the way due to some set-backs. So, comparing my longer journey to Joanne’s or m’s above would be a bit like comparing apples and oranges. As m. said, the forum exists for folks who are looking for support, so it will attract folks looking for help to navigate starting treatment and the hurdles that can sometimes be experienced along the way.

I also agree with m. that the best resource is The New Arthritis Breakthrough, by Henry Scammell, which I also read repeatedly during my first year and practically memorized the darn thing! 😆 It’s important to read it (and the educational info on the main site) in order to make informed decisions about starting treatment and also to help steer it and tweak things, if necessary, along the way. The good part is that it’s a relatively benign therapy. Folks who are on other rheumatic drugs don’t need to stop these cold turkey and it’s usually advisable not to do this (unless there is a need to due to intolerable side-effects). Many folks here have been on other rheumatic drugs when they started their AP and their goal has been to gradually taper off the other drugs, one at a time. It can be a bit of a balancing act, first getting stable on AP, and then tapering off other drugs very slowly, but the tortoise wins the race in this scenario. Most folks here are so grateful for Brown and AP and, once you’ve been around here for a few months, you’ll be an old pro and feel a lot less scared about things. Knowledge is power, as the saying goes, and the more informed you can become, the easier and more empowered you’ll feel to self-advocate. 😉

Do you need an AP Provider list? If so, here is the link to request one:

viewtopic.php?f=1&t=54

[pittRAlady]

So my labs from last week show that my ESR is in normal range. Should I still pursue the AP or hold on to this natural remission? I have little pain in the mornings and at points throughout the day.

[Maz]

@pittRAlady wrote:

So my labs from last week show that my ESR is in normal range. Should I still pursue the AP or hold on to this natural remission? I have little pain in the mornings and at points throughout the day.

“I have some mild pain in my foot (esp if I go walking or try to exercise) and it comes and goes in hands. I have researched this and am inclined to travel to see a doctor based out of texas that has alot of experience with the AP,”

Based upon what you said above…

…it wouldn’t be a bad idea to get a head start on things and at least make a visit to see an experienced AP doc to ask for some insight on your situation. In the early days, RA can creep up and wax and wane. Your RF is near normal and anti-CCP can be positive for years without producing symptoms, but can also be predictive of the potential for developing fulminant RA. It may well put your mind at rest to just see an experienced AP doc to get on the road to learning about an anti-inflammatory diet, supps that are beneficial, hormones, etc. Also encourage you to read the book, as there is a story of Brown treating a young woman who was also in the very early stages that indicated rheumatic disease.

How did your cardio-CRP look? Sometimes ESR is within normal range and CRP is elevated. You didn’t mention when you came off the pred and plaquenil, so not clear if you’re still in the “honeymoon” period or past any possible rebound.

Best fellow RAer thoughts to pass along – get as informed as you can with all the info on the main site, read the book, and think about seeing an AP doc to get ahead of the game. It’s much easier to make decisions when feeling armed with information. 🙂

[pittRAlady]

CRP was in normal range also. Was only on Plaquenil for 3 days and prednisone for two week taper. Have been off all for two weeks now. I hope this isnt a honeymoon.

[Maz]

@pittRAlady wrote:

CRP was in normal range also. Was only on Plaquenil for 3 days and prednisone for two week taper. Have been off all for two weeks now. I hope this isnt a honeymoon.

A small percentage of folks are very fortunate and go into spontaneous remission and it’s possible you may be one of the lucky ones. Let’s hope so, pittRAlady! If you want to play it safe, still not a bad idea to be one step ahead of any chance of recurrence and to find a doc to help you, if you ultimately decide to choose this route to treatment, of course.

[m.]

If you go to Google, and to the sub-search category Books, type in “new arthritis breakthrough fatigue: the early warning”, and it should pull up for you Chapter 12 in TNAB titled The Case for Early Detection and Treatment.

Maz wrote: “….and anti-CCP can be positive for years without producing symptoms, but can also be predictive of the potential for developing fulminant RA…..”

I never had this test done, but I would not be surprised if I was positive before my first severe arthritis flare. I definitely had other early warning signs, as mentioned by Brown in TNAB, such as fatigue, low mood, and anemia. That was all brewing long before any joints hurt.

[Author]

Posts