I had a ccp blood test Thursday and had a phone call today with the dr to discuss my results. I am negative so no signs of ra. He did say I have some inflammation but we didn’t discuss it and now I’m mad at myself because I didn’t ask!
He basically said as this is the same pain & symptoms & have been going on since I saw rheumatologist (2018) and nothings changed it’s what I was diagnosed with which was hyper-mobility syndrome, I said that’s fine he told me that but the physio I saw in jan told me I wasn’t so which am I? Didn’t answer.
He then told me weight has an impact on joints, completely get that I’m 120kg so I really am overweight but when I said I’m taking ibuprofen to help me get out of bed, struggle to get up and down stairs, to dress and shower myself losing weight is difficult. He told me about weight management for self referral, I will look at it but I just wish they wouldn’t blame weight for everything!
I’m lost is there really nothing wrong with me or am I not being listened to? As soon as I come off the phone I burst into tears. I don’t know what to do, do I just live with this pain?
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Crazycatlady_101
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Thank you I didn’t even think of this! Yes I will try! ❤️
They will blame your weight for everything. Been there, done that. Lost half my bodyweight by myself to get to a healthy BMI (all 10 stone or 63kg of it), which just left the doctors scratching their heads when a number of the problems got worse rather than better. My knees were one of them; I do have some OA in them, which could well have been caused by being obese previously, but I do also have inflammatory arthritis in them, too.
With the caveat that I’m not medically qualified. Negative anti-ccp does not definitively mean no inflammatory arthritis. Neither does negative RF. There are people with RA that don’t have either of these, and there are also other forms of inflammatory arthritis where having these would be unusual, such as psoriatic arthritis (PsA). I had my first flare at 16, and it took me 20 years to get a diagnosis because I have PsA and all of my bloods are normal even with massively swollen joints. Normal bloods are very common with PsA, but were the reason I was told even by a rheumatologist I ‘couldn’t possibly have arthritis’. As a result of going undiagnosed, I now have widespread arthritis and permanent joint deformity, and I’m really struggling to get any kind of disease control even 2 years on from getting a diagnosis.
You mention that he said you have some inflammation: how was that diagnosed? If it’s from ultrasound, then that would be indicative of an inflammatory arthritis and should not be ignored. If it’s just from bloods, then getting an ultrasound of an effected joint would be the way forward: inflammation on ultrasound is definitive and the only reason I was finally diagnosed after ten years of back and forth. The doc could be right and it’s not inflammatory arthritis, but having been in your shoes, and having been repeatedly fobbed off and dismissed due to my weight by GPs and consultants alike, I would encourage you to either push for a second opinion or potentially even go private to see a rheumatologist if that’s an option.
Wow 20 years is such a long time how did you not give up! I am worried that I am being misdiagnosed because I don’t think the pain im having and for how long and where is normal! The inflammation is just detected by blood and he said there’s no cause for concern 🙄 but when I first had a blood test around 2018 there was inflammation in my blood but no end result why and when I saw the dr last Wednesday he mentioned it and I said once again there was no reason why and still no answer.
I think the only way I will be listened to is if I lose weight because that’s all they see is the problem and the fact I was given a diagnosis of 2018 with hyper-mobility syndrome.
Losing the weight is important for you, generally. It will help with your health in the shorter and long term, but it will also stop some of the bias you’re experiencing, improving things by making it more likely medics listen to you. Your weight shouldn’t be an issue in that regard, but from personal experience, it absolutely, often is. In my case, bad knees? You’re fat. Bad back? You’re fat. Reflux? You’re fat. Irregular heartbeat? You’re fat. In reality, my back and knees were inflammatory arthritis, we now know the reflux was a hernia, and the irregular heartbeat was an arrhythmia I’d probably had for several years prior. I was overweight/obese for a total of 5 years, and it happened as a direct result of losing any meaningful ability to walk whilst waiting for brain surgery, but the fact that the medical issues all pre-dated my excess weight was ignored. Even where they did have to diagnose and treat me (like my arrhythmia), when I was big, the quality of care I received was massively substandard. I didn’t get advice or appropriate treatment that I should have done. There was a perception that any medical issue was my own fault, but they were the ones that had misdiagnosed a neuro problem for more than 18 months; had they diagnosed and operated in a timely fashion, odds are I wouldn’t have got overweight, but after the 18 month delay in diagnosing, I had to wait a further 18 months for surgery when I could barely get off the sofa for the duration, and ate because I was in constant pain, peed off, and depressed. Hardly surprising. But it’s worth pointing out that no one gets to be more than just slightly overweight if they have a healthy emotional relationship with food.
Anyway. Yes, losing weight is going to help, but as hard as it is, I would also keep pushing them a bit in the interim. If you want to chat about diet and what worked for me (which didn’t involve cutting anything completely out, either), then by all means feel free to drop me a msg. I dropped about 6 stone in 7 months initially, but it took me a total of 2 years all told to lose everything. I’ve been maintaining my weight for the last 5 years, now.
When I was diagnosed my bloods were negative for markers, my CRP was 5 and ESR at 28, neither massively high. My GP said those results were fine, the Registrar they they were a little high but nothing to worry about, the Rheumatologist that they were higher then they'd like and needed investigating, all the same test results.
The diagnosis was given after a nuclear scan showed the extent of the inflammation (I was gutted I didn't get superpowers after being injected with gamma radiation!). I was 18 when first symptomatic and 34 when diagnosed. I have had Registrars I've seen in lieu of the Consultant try to take that diagnosis away because they have only looked at my bloodwork. So frustrating! But if you feel that there is more going on with you than they are seeing then keep trying.
If you can lose some weight then do (I understand how difficult that can be). In the course of the last 6 years, with the help of the lovely RA medication I've been on, I've gone from a size 8/10 to a 16/18 and there has definitely been a shift in the way I'm treated by some.
I’m similar to Charlie, in that I had symptoms for around 24yrs that was always put down to my career as a trauma nurse. I attended rheumatologists for 4yrs being treated for polymyalgia with steroids. I kept complaining about severe back, neck & buttock pain. I knew something else was going on, and need up travelling 250 miles to see an expert in polymyalgia. She agreed there seemed to be something else as I was waking in the middle of the night with very severe pain in my ribs and pelvis. She ordered an X-ray of my sacroiliac joints which showed they were fused, and that I in fact also had ankylosing spondylitis. My inflammatory markers were only ever slightly raised prior to starting steroids. She then did an mri which showed fusion of my ribs, which has now resulted in lung issues, as well as 3 slipped discs. The disc in my neck has calcified in the slipped position and now starting to press on my spinal cord.I had to be referred back locally for funding for biologics.If you feel there is more going on, push for a second opinion, your GP can do this for you. I was dismissed for so long due to my normal bloods. NASS state 50% of patients with spondyloarthritis have normal bloods. I always have to point this out to my rheumatologist when I’m in a flare and he tries to dismiss. The other option is to push your rheumatologist to do an ultrasound on one of the most troublesome joints. Your GP may be happy to try a short course of prednisolone, if you improve on that it indicates it’s inflammatory in nature. So you have some options, keep pushing if you feel he is wrong. I wish I’d been taken seriously earlier, before all the damage occurred. 🤗
I have RA but I knew something else was going on as well as it was muscular pain as well as joint and landed up in April in a private consultation being diagnosed with Fibro as well. When I read a book by Dr Leo Chaitow Fibromyalgia and Muscles it was a light bulb moment for me. I got it on kindle .99p. It helps understand arthritis/oa Ra and fibro and how they all can work together.
Each time I have a blood test I e-mail my surgery and ask them to send me my full list of results and I look for esr which tells you levels of inflammation and crp too (but they dont test crp as often) you also get familiar with the other ones and can look for trends too. It doesnt in isolation give you a diagnosis only the drs and consultants do that but they dont always get it right and results can help you discuss it with them more knowledgeably.
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