Advice sought for RA and AP newbie stuff

[goldengate99]

Hello,

I am a 38 year old caucasian female and began developing RA symptoms (sore joints) after the birth of my 2nd child.  He is now 10 months old. 

I have now been to see 3 or 4 RDs and no one can agree on a diagnosis or a treatment. 

My highlites of my bloodwork shows:

RF 37
WBC 2.4 LOW (runs in family)
ANA negative
C-Reactive was 8 in March 2008
CCP was negative 15.6
Sed Rate was 4 in November 2007, up to 12 in March 2008 (diff labs)

I had an MRI done and the report reads:[font=”Geneva, Arial, Helvetica, sans-serif”] “multiple small enhancing erosions within the capitate bilaterally with mild synovitis of the carpus and MCP joints.  Findings are consistent with and concerning for mild inflammatory arthropathy”.  Also, mild to moderate tendonopathy of both carpus extensor ulnaris tendons in both hands/wrists.

[/font]Hand X-rays showed solitary, tiny, well circumscribed degenerative cystic lesions within the infereior portions of capitate carpal bone. No significant soft tissue swelling. Normal radiograph of the bilateral feet.

One RD said I should go on Enbrel immediately and only Enbrel and said I had a lot of joint damage.  She said MTX is a no-go b/c of my low WBC.  100% sure I have RA.

Another RD said I could try MTX, Enbrel, Triple Therapy or AP.  Thinks I have RA.  Not 100% sure.

Another RD said I should try MTX.  She said I “probably” have RA but without swollen sore joints she can't definitively diagnose me.

I have little to no swelling by sight or manipulation of joints.  Only slight morning stiffness, nothing serious.  I have lots of migratory pain in joints of hands, feet, ankles, knees and lower back.

I had bloodwork done in my mid-twenties and I had a postive Rheumatoid Factor test then.  Not sure why it was done…

I have taken nothing so far except NSAIDs and need to start something ASAP.

I am thinking of doing AP for 3 months and if nothing major happens, I will try Enbrel. 

I am not even sure I have RA….
 
Please please, if you have any words of wisdom, pls share.

[Maz]

Hi GG99,

Have you had a chance to read Henry Scammell's “The New Arthritis Breakthrough?” If not, highly recommend it, as it will help you navigate all the twists and turns when beginning AP. It's become my “bible” in the past year or so and I still go back and re-read parts when I have a question on my mind about something pertaining to the treatment.

In the book (which also includes Dr Brown's book, “The Road Back”), Dr Brown encourages patients to start AP as early as possible, when symptoms are minimal, as the typical course of RA, if not the explosive kind, is to creep up. Starting AP when initial symptoms arise averts the potential for an explosive flare or generalized worsening. It's also easier to treat mild, early RA than to reverse longstanding more severe disease. So, you've definitely found this site at the best possible time! By starting early, you have every chance of turning this around in good time.

As per your bloodwork, it's also good that you are anti-CCP negative. This test is considered to not only be confirmation of RA, but can be a prognostic indicator of severity. Also may be relevant to mention that RF can be elevated in a number of conditions, so not always indicative of rheumatoid arthritis, although it is considered additional confirmation of a diagnosis in combination with clinical presentation of symptoms that are consistant with RA.

An elevated cardio CRP isn't all that uncommon in RA and indicative that you have some kind of systemic inflammation going on.

The good news is that once you get started on AP, you should see all these numbers come down over time. Initially, you may experience worsening for a period and this is pretty typical of the herxheimer reaction.

For more information, if you go to the main website and look under the education tab and click on “Physician's Packet,” you'll find a wealth of info on mino under “Current Protocol,” including dosing, as well as what to expect under, “Historical Protocol.” Here is the link to get you there faster.

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

One thing you may like to consider is that AP is a longterm therapy and results may not be as immediate as the standard drugs that tend to just mask symptoms and not get to the underlying cause of RA. Three months may not be long enough to really gauge how you're doing, simply because some people do worsen initially. This is actually a good sign that AP is working and pathogens are dying off.

Another consideration is determining the best dose for you. The standard dosing a rheumy will prescribe is 100mg mino twice a day. While this works well for some people, others find that they can't tolerate this dose and starting slow on a lower dose, along with pulsing the dose is easier to handle. Common side-effects of mino are dizziness and nausea, but these tend to pass as the body adjusts to minocycline.

Hope this helps. There is a search box at the top of the bulletin board and you can also access the old bulletin board at this link, if you'd like to do searches on any old topics that have been discussed amongst users here:

 https://www.roadback.org/cgi-bin/eboard30/index.cgi?board=Main

Peace, Maz

[goldengate99]

I have read the book, just finished it.  Loved it.  made a lot of sense to me.

I will stick on AP for a while, I may add Enbrel to the mix in the late summer if I have to. 

Question:

I am not sure if I *really* have joint damage or not.  The RDs disagree.  One says I do, two say I might. 

Any insight?

[Maz]

[user=434]goldengate99[/user] wrote:

Question:

I am not sure if I *really* have joint damage or not.  The RDs disagree.  One says I do, two say I might. 

Any insight?

Hi GG99,

In what context do you mean? Do you mean should you go on the heavy hitters to avoid further damage?

If so, this really has to be a personal choice and largely dependent on your need to function. In truth, biologics and DMARDs work at odds with antibiotic therapy, because the former are suppressing the immune system, whereas the latter works by “retraining” the immune system. So, although some people will use a biologic, methortrexate, arava or something else in combo with mino, initially, the idea is to wean off these over time to allow the immune system to find balance again.

Of note is that any joint damage that has already occurred cannot be reversed and different docs will always have their own interpretation of degree of damage. This is a given, whether you are on AP or conventional meds. Although the biologics, like Enbrel, seem to help some people with pain and halting disease progression, the other consideration is that often the biologic will be given in combo with methotrexate, as it is believed that mtx will prevent the build-up of antibodies against the biologic, which can stop working over time. Once the heavy hitters fail, there are really no other alternatives to fall back on. There is also the concern of side-effects from the use of biologics and, even when argued that these are uncommon, they can be very serious, including such things as life-threatening infection, lymphoma, hypersensitivity reactions, blood cell deficiencies…amongst others. Inflammation does cause joint damage, though, and it is a dilemma we all face. In my own case, I chose plaquenil in combination with abx therapy in the beginning, as plaquenil is considered to be one of the “safer” DMARDs (the biggest risk being macular degeneration of the eyes, but for which this can be monitored with regular eye-testing).

I really don't mean to sway you either way, as you sound like you've done your own researches and able to make your own fully informed choice….my only suggestion would be to give AP a longer opportunity to work for you….even if you have to add something later.

It's always a very difficult decision to make in the beginning, simply because AP isn't an overnight sensation and can be a bit like taking three steps fwd and two back all the way…but it does work in the majority of cases to halt disease progression and relieve many of the symptoms that many of the standard drugs don't touch…like fatigue and depression, for instance. These are a couple of the earliest signs that AP is working, usually before significant relief of achieved.

All the best in your decision-making process!

Peace, Maz  

 

[goldengate99]

The radiologist who wrote the report wrote that i had some damage, but whether it's RA damage or not is up for grabs… a couple of RDs that I've seen are on the fence about it.

I was hoping someone here would know the lingo and be able to help me out…

In my original post, I included his exact words (the radiologist). Any help appreciated.

[Maz]

[user=434]goldengate99[/user] wrote:

The radiologist who wrote the report wrote that i had some damage, but whether it's RA damage or not is up for grabs… a couple of RDs that I've seen are on the fence about it.

I was hoping someone here would know the lingo and be able to help me out…

In my original post, I included his exact words (the radiologist). Any help appreciated.

Hi GG99,

Sorry not to be of any help with your X-ray question. The trouble is that we are all just patients ourselves and the lingo tends to be in physician-speke – even the doctors interpreting the results will have different opinions, as you have discovered, receiving 3 different opinions.

From a patient perspective as someone who began with a diagnosis of severe, seropositive RA, I can understand your concerns about possible joint damage, but as you rightly say….your dx is really “up for grabs” and even your RDs are “on the fence” about it.

I can't speak for others here, but we've had a few discussions about “doctor pronouncements” rgearding dx and prognosis and how these can really do a number of the psyche and, by default, the progression of our disease. In general, though, the people who participate here are ones who have come to AP, because they've tried and failed on standard drugs, or prefer not to take the 'heavy hitters' and have made the choice to put their faith in AP working for them. This is really what it comes down to, in the end.

There are also a number of people here who have never been given a clear cut diagnosis – so often there is overlap with other rheumatoid disease – but have read the material and believe that their disease has an infectious cause. So they begin AP and go from there. Others don't really know what they believe, but have discovered minocycline as a safe, alternative that works for them. Dr Brown, himself, was a bit of a “lumper” and felt it really didn't matter what rheumatoid dx a person was given…antibiotic therapy worked to varying degrees for all.

Ultimately, therefore, what it basically comes down to is whether to follow conventional wisdom, which is that all these rheumatoid diseases are idiopathic (no known cause) and need suppressing or whether one feels there is an infectious cause. As such, it really has to be a personal decision after looking at all the material and making an informed choice.

In my own case, my RA was so severe and swift with onset that I know I probably have some damage. However, I've done so well on antibiotic therapy without using any form of immunosuppression and haven't looked back. In fact, when my doc has asked if I'd like to monitor progress with X-rays and MRIs, I asked, “Why?” and he replied, “Exactly!” That's because I have chosen AP and have no desire to take conventional meds. In truth, there is no guarantee, even with conventional meds that joint damage won't occur over time. This is just my own feeling about this, though. You and others may feel quite differently. 😉

Wishing you well in your searches and decision-making process!

Peace, Maz

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