RA diagnosis - follow up: Hi 🐈👋 So today I went to... - NRAS

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RA diagnosis - follow up

regina79
regina79

Hi 🐈👋

So today I went to see the Rheumatologist for my follow up after all the blood tests and scans. It turns out I have a very high Anti-CCP which Im told is very specific to RA. Plus I also have ANAs test positive for autoimmune diseases. The other tests like ESR, RF and CRP were not positive.

So she wants to repeat these in October. She now wants me to have Ultrasounds of my painful joints to see if they show synovial fluid so that she can tick all the boxes for a precise RA diagnosis but most of all to assess whether I should be starting treatment or wait..

Im sick of all these scans. These last couple of weeks have been crazy! Been running around for scans and blood tests. So exhausted but of course im glad she's so thorough and wants to make sure to make the best assessment.

Did anyone have my same experience? She thinks that although i do have symptoms and I've got a high risk of RA my disease stage must be very early days. Fair enough. I would just really like to feel better soon and be given treatment. Ive never felt so awfully in pain, tired, old in my life 😔😢👵x

16 Replies
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Hi, yes had to have ultrasound scans on several joints, they are looking for 'activity' within the joints where the synovial fluid is (all joints have synovial fluid) the consultant showed me the activity he could see on the screen as he was doing it. Also had x-rays, blood tests etc. Must be frustrating having to wait, mine was all done at the first rheumy appointment like a one-stop-shop. Did they advise you take any pain meds or NSAID'S e.g ibuprofen in the meantime?

regina79
regina79
in reply to JFlay

Hi JFlay,

thanks for your message! That's very interesting :o

I wonder if they will find any particularly in my knees as they are very bad. Hands are bad too, stiff in the morning etc. But they are not swollen.

I can't take NSAID's because I got stomach ulcers and kidney issues too... took too many in the past. However I am taking very strong and effective Curcuma, Omega 3 and Bromeline. I also bought CBD oil last week... and they help.

Which blood tests were positive for you? xx

JFlay
JFlay
in reply to regina79

I asked him about my knees when he was doing the ultrasound but he said can't do knees with it so had x-rays.

RF was high 186 and ESR high 103. My CRP is always ok though, so far. They also did my ANA to check for Sjogren's syndrome but it was negative.

I just use good old Paracetamol or Co-Codamol if necessary as anti inflammatory's upset my guts.

regina79
regina79
in reply to JFlay

yes, I use paracetamol too if I feel too much pain.. and for my migraines. xx

Interesting that you don’t have raised inflammation levels, but have pain. Do your painful joints get hot, red and swollen? And did the specialist rule out fibromyalgia? But this disease is so variable you can get just about any combination of symptoms/ results which is why doctors need to be sure before proposing strong drugs. Hopefully it won’t be too long until your ultrasound appointment. Although if you do have RA you’d better get used to spending time on medical tests, appointments etc. It’s a frustrating part of the disease, and everything is so slow!

My diagnosis was much easier as physical symptoms obvious, plus raised inflammation. So can't help you on that. But what I can suggest is that I’ve read several bits of research (which i now can’t find) which show that it is at early stages of RA that you can make the most difference with lifestyle changes. So this is the moment to look closely at how you live (diet, exercise, weight, smoking, stress, sleep) and think about making positive changes. People can have the predisposition to get RA, but it can stay dormant until it is triggered. So the better you look after yourself, the less likely it is that it will burst into full blown activity. (Smoking is apparently the worst thing you can do, as strong correlation between RA & smokers - so if you do smoke now’s the moment to stop!)

regina79
regina79
in reply to helixhelix

Hey Helix,

I definitely find that very shocking too! All I can feel is severe inflammation everywhere.....

My knees are the worse, but can feel it in the hands and hips too. In general both legs feel AWFUL. From the waist down i'm a total wreck :( ...

I do not have red joints. The knees feel very inflamed, swollen and warm when they flare up! Well, she said that in order to be diagnosed with Fibromyalgia, you need to first exclude all other possibilities and whether your widespread pain is due to 'other identifiable causes'. Fibromyalgia relates to 'unexplained' widespread pain. And it's not me... as I have injuries, bursitis, and other problems plus swollen knees and pain in hands. Plus I have a very high and positive Anti-CCP which relates to RA specifically. So if you have RA you won't have Fibromyalgia. According to this specialist......... but I do indeed have A LOT of symptoms which are present in Fibromyalgia.

Likely, I have Private Med. insurance at the moment, so I don't have to wait for appointments or scans. I can just turn up whenever I'm free. I'm very lucky I know...

Yes, she did say that she needs to tick all the boxes, and although I'm positive for RA and autoimmune diseases, and have symptoms, I also need to show synovial fluid in the painful joints. She simply thinks it's very early stages, and I think so too. It makes sense. She said that the activity could start and get aggressive quite quickly, that's why we need to monitor it. That's why I'm repeating the blood tests in October to check again what the activity status is. And also the specialist indeed told me that we need to act quick with the treatment if we find inflammation. Oh I could never smoke... I'm extremely sensitive to smoke :( passive smoke cause me to chain cough and makes me feel DEAD inside and exhausted. So I need to run well away from people who smoke every time.. it's so frustrating. I'm also very sensitive to pollution etc.. :( I am not exercising at the moment as I have a very bad hip, with 'bursitis' and 'trochanteric pain syndrome' and it's extremely painful :( so doing lots of physio. But normally I'm quite healthy and I eat healthy too.

What were your physical symptoms again?

xxx

helixhelix
helixhelix
in reply to regina79

Anti-CCP is 91% specific for RA....so pretty high, but not an absolute certainty. And many people on here have fibro and RA, so they are not exclusive.

However you do sound as if you have a whole bunch of symptoms that are typically associated with an inflammatory arthritis. Mine were unmistakable by the time I got to see the specialist -so agree entirely that once it takes off it can go like a train. I had hot, red knees like balloons, sausage fingers, swollen wrists, feet that I couldn't walk on...etc. And joints sloshing around with fluid even tho’ my inflammation markers were only slightly raised. Turns out that my levels are naturally very low.

If you are in the UK it could be worth starting the process to get on an NHS rheumatology list, which can take a long time. Your private medical insurance is unlikely to cover chronic diseases, so if you are diagnosed then once stabilised you’ll have to pay. And some drugs can only be provided by NHS, so hedge your bets.....

regina79
regina79
in reply to helixhelix

THAT is ... interesting.. :o My Rheumatologist doesn't seem to believe that about Fibromyalgia.

Yeah, I feel IT trust me. :( Gosh.. that must have been scary for you to see and feel.

I might as well do that yes. Thanks for suggesting. I dont know how long I can see this lady private... it depends on the insurance really. xx

When I was diagnosed my rheumatoid factor was high positive and I had significant fatigue and joint pain, and multiple swollen, red joints. But my CRP and ESR weren't elevated, and still haven't been elevated.

From what I understand anti-CCP is very specific to RA, and if yours is positive you almost certainly have it. But the ANA--doesn't that point more to lupus? Or does it depend on the pattern (I think so)?

It's a good thing your doctor is being thorough.

regina79
regina79
in reply to Pawz4me

Hey Pawz4me,

thanks for your message.

What joints were painful, red and swollen for you? Sorry to hear.

Same here. CRP and EST were negative.

Yes, that's what the specialist told me. Anti-CCP is very specific to RA. Well, apparently ANAs point to autoimmune diseases in general. And depending on your symptoms and I guess the fact I have positive and elevated RA blood tests (in my case RA) it will be attributed to the symptoms and specific blood tests you have. I also have Hashimoto thyroid issues so that's also an autoimmune disease. And possibly Raynaud's, also autoimmune. And of course RA is autoimmune too.

Yes.. I guess so xx

Pawz4me
Pawz4me
in reply to regina79

Three or four of my finger joints were swollen. I also had significant pain and stiffness in both wrists, ankles and big toes/balls of both feet.

I have to say: I'm strongly convinced that my hip bursitis and pain syndrome (which I have since 9 months!) is related to RA. It also mentions it online on many articles.

This hip does not seem to be getting better and I just don't think is going to happen... I've tried everything. Steroid injections did not work either. It's the worst pain ever and it feels like my hip is breaking... every step I make.

helixhelix
helixhelix
in reply to regina79

If the hip doesn’t respond to steroids have you had it x-rayed or scanned to check whether it’s physically damaged? It strikes me that October is a long time to wait in pain....

regina79
regina79
in reply to helixhelix

Tell me about it... I'm really angry with the Orthopedic i chose. He really is an idiot! At first he told me that I would need 2 injections.. then he told me we have to wait for the second injection cos it was 'dangerous' for 4 more months!! :O I was shocked.

He said I could have a second one after 6 weeks at first. Now 2 and a half months have passed. Shocking to say the least. I hear of people going for injections all the time. and definitely more than once.

I had an X ray and it showed Hip Dysplasia... a mild form. However this "idiot" said that i shouldn't worry about it AT ALL... But of course I don't trust him anymore. xx

helixhelix
helixhelix
in reply to regina79

Trouble with “mild” is that the slightest fraction of a millimetre can make a huge difference in terms of pain. May look just fine to the radiographer, but a tiny bit of extra pressure on a nerve can be agony. Will your private insurance cover an MRI? And if there’s inflammation too..

regina79
regina79
in reply to helixhelix

Yes and I have done an MRI of both hips now. It showed 'Trochanteric pain syndrome' and inflammation of the bursa, but then I already knew that I had inflammation of the bursa... It's extremely painful - the worst pain I've even experienced. I swear it got so much worse lately and I need to be extremely careful to how I move, walk, sleep.. or I'll be in severe pain for weeks and weeks. xx

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