Rheumatoid Arthritis
An incurable diagnosis or a curable misdiagnosis?
Back in 2015, when first diagnosed with a rheumatic disease, I was informed by my consultant that it was incurable, that I simply had to accept the diagnosis and take the medication he prescribed. The End.
For me though, something didn’t sit right about the diagnosis. The first red flag was my blood results as none of my inflammatory markers were raised, my rheumatoid factor was normal and the only marker that was above normal levels was a test called an anti-ccp count. From this one test and the excruciating pains that would come and go in my body, my fate and the diagnosis was sealed.
For a better understanding of this, I have listed the tests I had with my results for a better understanding.
Rheumatoid Factor
The rheumatoid factor (RF) blood test was discovered over 70 years ago by Erik Waaler. It is used to diagnose RA as well as other autoimmune conditions like Sjogren syndrome. Rheumatoid factors are proteins that the immune system produces when attacking healthy tissues in the body. High levels of these proteins are usually present when the disease starts. However RF levels can be found in healthy individuals and in patients with other conditions, and to complicate matters even more you can have a negative RF result and still have RA, which is known as seronegative. Quite confusing.
My results : normal - 20u/mL
The range for this test is between 0-20. However, alarmingly I found out that my consultant wasn’t completely truthful when he told me my results and said it was positive, when in fact it was on the cusp of being a positive result, thus making it negative!
Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP)
These tests are normally taken at the same time to measure clinical inflammation. They are non-RA specific but if high, along with other positive tests, suggest that the disease is very active.
My results : normal.
However in a study of 9000 patients with active RA, 58% had normal ESR and CRP. So yet again not a test that is full proof for diagnosis .
Anticyclic Citrullinated Peptide (anti-ccp)
Currently the main blood test that doctors use to help diagnose Rheumatoid Arthritis (RA). Any result >20 is classed as raised. The higher the result the more likely to suggest it is RA and it’s also meant to predict how aggressive the joint erosion will be in the future.
Anti-cyclic citrullinated peptide (CCP) is an auto-antibody immune system protein that triggers autoimmunity, meaning that the immune system begins to attack healthy tissues by mistake, the same concept as the RF. Antibodies are proteins that help with fighting infections. However, auto-antibodies are proteins that cause the immune system to attack healthy tissues. These invade certain peptides in the lining of joints causing inflammation, leading to joint pain, swelling and eventually joint damage. Which is why if you have this issue, the blood test will show raised anti-ccp levels in your blood.
Makes perfect sense right?
Until they did more studies and found out that an anti CCP test can also be correlated to other diseases such as systemic lupus, tuberculosis, and autoimmune hepatits. So it actually isn’t just for RA.
However there is more. According to some research, this raised result can occur in 1.5% or less of the healthy population and 10% can be a false positive and not related to RA at all (like the other diseases I listed above). It is also stated that a positive anti-ccp count shouldn't be the sole reason to start an anti-rheumatic therapy treatment plan, it also needs to have other symptoms for diagnosis such as:
morning stiffness that affects the joints for at least 30 mins to 1 hour every day
fatigue
fever
weight loss
tender, swollen and warm joints that occur symmetrically within the body
rheumatoid nodules under the skin
My results: Very high. 241 and the normal range was 0-20.
Yikes. So there was definitely something going on.
According to the arthritis foundation, some researchers believe RA isn’t a single disease but rather a collection of diseases. It might also be one disease with many different causes.
To add to the confusion of it all and making a diagnosis, we also have seropositive RA and seronegative RA to get our heads around.
In seropositive RA, blood tests show unusually high levels of the anti-ccp antibodies. These specific markers may show up as much as a decade before symptoms do.
However with seronegative RA, patients do not have these antibodies showing up in their blood but are diagnosed with the disease from the collection of symptoms they may be suffering with.
So in conclusion to all this information, if the anti-ccp test is positive, it MAY be RA but it MIGHT also be because you are in the 10% of the population that has a different disease in your body.
OR
You may be in the small percentage of the population that might just have a raised count and not have anything wrong with you at all. Not forgetting that if all the tests for RA are negative but you show the symptoms, then it still MAY be RA because sometimes they can also be negative but you have the disease.
Totally confusing and definitely feels a little bit like a diagnosis lottery. The question I had was… Could I have been one of the 1.5% or even one of the 10% and have a different autoimmune issue?
Writing this now and looking back at the results of my very high anti ccp count and the symptoms I presented, I can totally understand why my consultant decided that I had RA. Yet at that particular time my gut instinct was strongly signalling to me that it wasn’t the right diagnosis and then, with finding out about the correlation between breast implants and autoimmune issues, it was leading me to investigate further. Just for the record, I did speak with my consultant about all of this and he chose to pooh-pooh the possibility of breast implants being the cause, stating there was no scientific evidence and told me to stay on the medication or my health would seriously decline.
I had two choices at the time, to take the gold standard mediation that is recommended to patients with an RA diagnosis - which also comes with a hefty health warning itself - or to go rogue and see what happens. But before I could even begin to contemplate accepting the diagnosis, I needed the toxic tits removed which would then allow me complete clarity to know for sure why my body was in such turmoil.
If you have read any of my previous posts you will know by now that I initially went with the rheumatologists advice and took the medication. But after a few months decided to stick two fingers up to the advice and go rogue. It was a huge gamble to stop and go against the specialists advice and believe me, I had an abundance of anxiety and stress that was all related to making that very decision.
Methotrexate is known as the gold standard medication prescribed to most RA patients. It is a disease-modifying anti-rheumatic drug (DMARD) that is a chemotherapy agent and immune-system suppressant. It is normally taken once a week in pill, liquid or injectable form starting at 7.5mg -10mg and can take up to 12 weeks for symptoms to start improving and for the patient to start to feel the benefits.
The side effects for me were really awful and the medication made me feel worse. To be honest I think they were possibly the worst three months of my life. It was only when I found out about breast implants causing systemic issues that I felt I had been thrown a lifeline as to why my body wasn’t playing ball, and this information gave me the courage to stop the medication and think outside the box when it came to regaining my health and life back.
For me at this point it was all about getting the anti ccp test results back to a normal level to then prove to my consultant that it was the implants causing the issues, not a disease and that I didn’t need to be on any medication.
According to my first rheumatologist an anti ccp test result would never go down, I would be defying medical science if it did. According to my second rheumatologist, it didn’t matter if it went down to zero, I would still have RA.
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