Hi All 🙋
I'm new here. How was everyone diagnosed...?
I was told by my consultant today that my blood tests were positive and one of them was very high. Will repeat this one tomorrow to make sure is correct. It's the anti-CPP I think.
My symptoms are: stiff and painful hands and fingers. Toes too sometimes
Hips are extremely bad. Back of knees feel extremely inflamed and painful too. Finally neck, shoulder, arm pain, severe.
Oh and lower back sciatica.
I'm 39.
Xxx
Hi, I'm fairly new too (January). I saw my GP initially due to classic RA symptoms, had blood tests and was referred to rheumatology due to the results, my rheumatoid factor and ESR were high. Rheumatology did further bloods, ultrasound scans and x-rays and confirmed an RA diagnosis. That's about it really 😂
Hi JFlay
Thanks for your reply.
What symptoms did you have exactly? And are the drugs helping? Xx
Hi,
My symptoms were/are morning stiffness... lasting about an hour; aches and pains mostly in my feet, toes, ankles, knees... sometimes a bad flare up in my knees lasting up to a couple of weeks; aches and pains in my feet stopping me from sleeping... it's always worse at night. Night sweats; Fatigue...
I was on Methotrexate for twenty weeks but the side effects were getting worse so that was stopped, I think I made some improvement on it but the side effects outweighed the benefits 😟 have to wait until the end of July for my next rheumy appointment... see what's next 🙄
Oh so sorry to hear 
What sort of side effects did you get? That's not good.
Sorry about your pains too. I have stiffness in hands, hips and legs too in the morning. But my hips and knees constantly hurt.
I wonder what alternative medication they'll give you. I hope it works better for you xxxx best of luck and let me know how it goes
I expect I will have to try a another DMARD, seems it's very much trial and error with RA drugs, what suits one person doesn't suit another 🙄 the side effects I had were nausea but folic acid increase helped with that, gut problems and gut pains and awful headaches. However, lots of people tolerate Methotrexate with no problems so just have to try it and see.
My diagnosis was also confirmed by a rheumatologist, not the GP.
It’s usually a mix of blood test results, physical symptoms, how you say you feel, and medical history. Then further tests like x-rays or ultrasound to confirm things, particularly for people whose antibody tests (RF and anti-CCP) are negative.
Hips and lower back are often osteoarthritis rather than rheumatoid. Sadly having one doesn’t mean you can't also have the other kick off at the same time.
Hi helix
It doesn't look like there's cartilage damage in my hips or knees but just a lot of widespread inflammation everywhere .
I'm having hips and spine MRI today and repeating the high and positive blood test plus more blood tests to check for ant infection as they want to put me on meds asap so they need to check that no infection is present.
Did you have any luck with symptoms improvement on meds? Xx
I’m 95% normal now, thanks to the drugs.
There is an inflammatory component to osteoarthritis too, which is often overlooked. However, I hope it is just widespread inflammation as that can be treated more easily than damage to the bone or cartilage!
Do try to get under an NHS consultant. Private schemes rarely cover chronic conditions for very long, and it gets expensive if you have to pay. Plus as AC said, some drugs can only be prescribed on the NHS because of cost. So check the terms of your policy.
If the person you are being seen by privately doesn’t also work for NHS (many do and will transfer you to their hospital list) then push your GP to refer you asap as in some place it can take months to get an appointment.
Hi helix,
thanks for all your advice. I appreciate it.
Yes I will definitely go back to my GP after I have a definite diagnosis and ask to be referred to an NHS Rheumatology center so that i can get support there too. I'm not paying anything to see my private consultant now as it's covered by work private med. I know they might not pay forever. But it's good I'm using it to get all the scans and tests done very quickly! And get all results super quick too.
I'm so glad to hear that you feel 95% now. that's really good... I can get a GP referral for the drugs, it's not a problem. I've done it before when I saw private consultants.
I will ask the consultant to check that Osteo is excluded. But my scans don't seem to show that. How else do you diagnose Osteoarthitis?? xx
Scans will do it! I harp on about OA as so often it is ignored or shrugged off, and it can be quite awful whether primary or secondary. These days my RA gives me little trouble, and the only thing I need painkillers for is the OA.
Also make sure you get something from consultant if you want the GP to prescribe. Depending on what drugs are proposed GPs can’t prescribe without say so from a specialist. And some drugs they just can't prescribe at all, as can only be done by a NHS hospital consultant.
Hello and welcome to this group. We are very friendly and knowledgeable. We often know more than the medics.
My own RA was dismissed for years by my GP so much damage done until I went to a Rheumatologist. I’m am s- negative so don’t show up in bloods but through symptoms, x rays and scans.
I have multiple joint problems and i too suffered with lower back pain. I had physio but it was a chiropractor who eventually was able to help. My back pain was due to my arthritis changing the way I held my body and the fact my feet and ankles changed my gait so my back and hips were thrown out of alignment. Your in the best hands it will be trial and error until things improve and you adapt your life to mange your disease. Your clinic nurse should be able to help you with this.
Your not on your own.Any questions there will always be someone here to help. It is also a great place to have a good old moan or just to let off steam. I do 😁
Hi J1707
Thanks for replying.
I'm sorry to hear that they haven't taken you seriously and you got worse before getting diagnosed that's so unfair but unfortunately the NHS is mostly good when things look really bad or in my experience they don't bother to check and send you for tests or scans.
That's why I went private last week. They also found Hashimoto thyroid issues .
So not sure if they'll put me on meds for that too ..
My back is not too bad and I think it's related to my hips. What's really had for me is both hips and knees. Also my upper back, shoulder and arm are pretty bad too.
I don't have a clinic nurse or a Rheumatology team as I went private but this lady is so caring and amazing. She calls me to let me know stuff and is really competent and knowledgeable. Having said that I won't have private med forever as I don't know if I'll stay in the same job forever. But I'm sure that my GP can refer me to a centre near me when that happens. I'm very lucky to have this private med and get to see people quick and have the scans and tests done on the day and also get results very quick.
Very grateful to this support group too now 🤗 so thank you xx
You really should find an NHS rheumatologist to make a definite diagnosis....
As J1707 says many GPs are not up to speed on rheumatoid arthritis and time is of the essence. The sooner you are on some sort of a disease modifying antirheumatic drug the sooner your joints will be protected.
If you do indeed have RA you will find your rheumatology nurse is your first point of call ...they are extremely helpful & knowledgeable ..... and as you say you may not always have access to private treatment ....& unless you’re willing to pay £200 each time you see your rheumatologist plus paying for all your drugs .....finding an NHS rheumatologist now could save you suffering whilst waiting months for an NHS rheumatology appointment when you really need it...... if you read some of the back posts on here you will see how long some people have had to wait.
If you do progress to a firm RA diagnosis, and down the line need Biologic drugs this can only be prescribed on the NHS ...... special funding authority is needed so it really is best to have an NHS Doctor can put that into motion.
Also, BUPA & many other private medical insurance companies do not cover rheumatoid arthritis as they consider it an ongoing incurable disease. I’m sorry if that sounds a bit harsh but it’s better that you know it now than find out when you are really needing a rheumatology consultant
Maybe the consultant you are seeing now would consider putting you on her NHS patient’s list?
Whatever your diagnosis turns out to be ... I do hope you get some treatment very quickly .
Hi J1707,
thanks so much for your support and advice. Really appreciate!
I am not really paying anything out of my pocket at the mom. It's my private med from work that pays all my consultations, scans and tests. So that's fine. But yeah, I will definitely go back to my GP to get referred to an NHS center when my diagnosis is clear. My private consultant wants to put me on meds as soon as next week. I can then call my GP and ask a prescription for whatever I should take. It's not a big deal. I've done it before when seeing private docs.
I have no idea if my private consultant also works for the NHS. I don't think she does... but I'll ask her for sure as I would love to see her with the NHS 
that would be amazing.
Thanks so much!! xxx
Don’t worry, most Consultants that are used by Private Medical Insurance companies have an NHS practice as well.......there are many people who go that route .....see their rheumatologist privately to get a diagnosis & to start on essential treatment, but then transfer to their consultant’s NHS list ...especially if they don’t have Medical insurance.
But I think you missed the point...once your insurance company knows you have been clinically diagnosed with RA, no matter who is paying the bills....they regard it as an incurable disease, which they will not pay for. They become very picky about what treatment they will & won’t pay for. Expensive scans & blood tests & nearly all surgery is usually 99% excluded. Therefore ...if nothing more than a back up .....you really do need an NHS Rheumatology Consultant.
You don’t want to find yourself suddenly adrift needing expensive treatment and having to find a consultant rheumatologist on the NHS willing to see you quickly,& then willing to provide the treatment a Private Consultant has told you, you need.
I’m afraid what is ideal, but expensive, is often not available on the NHS.Even minor beneficial procedures, can cost thousands in the Private sector.
I often pay for procedures that benefit me...but are not available on the
NHS......so next time you see your Rheumy, I would advise you to discuss it with her.
Thanks but I haven't missed your point. I'm aware of the private med policy on pre-existing and chronic diseases.
As I said I'll go back to my GP once I have the diagnosis.
Thanks for your advice x
I’m afraid there is a vast difference between pre-existing chronic diseases & incurable diseases .
A chronic disease does have a chance of being cured, RA is classed as incurable at this moment in time as there is no known cure.
I had cancer & I was cured...my private medical insurance paid for all my treatment, sadly there is no cure for RA & as I said insurance companies do not pay up if there is no known complete cure.
After all their subscriptions are very expensive for private individuals, they can’t be expected to pay for research as well as treatment or they would price themselves out of existence.
So we are very lucky to have our NHS to cover all our RA needs.
When were you diagnosed and are the medications helping at all? Xx
I was diagnosed nearly 4yrs ago I’m 20mg mtx and steroids injections.i was on hydroxychloraquin but was allergic to it. Meds worked really well but still had flare ups but they didn’t last long. Things have gone down hill since Christmas and Things continue to get worse especially the fatigue.Can’t be seen till August and this a cancellation appointment. Have rung every week since March in hope of an earlier appointment no luck🥺
So sorry to hear that things have gotten worse for you it must be very stressful.
I really hope that this app. will hurry up and you can be put on a new treatment that works better maybe.
Big hugs and not long now.. xx
My diagnosis could not have been more straightforward: I saw my GP complaining of painful feet and knees and told to have a blood test. Went back to GP for results a week or so later to be told I had RA and referred to a rheumatologist. Can't recall exactly what happened at my first rheumy appointment as it was over 16 years ago, but pretty certain I didn't have an x-ray and definitely no scan. There was an 18 month rheumy waiting list at the time but I was seen in a matter of weeks as my RA suddenly went bonkers after seeing my GP.
Good luck
My GP diagnosed me,was having extreme pain in both wrists. Before that I was having physio for neck pain and I think she suspected RA as it was her that told me to go see GP. I saw a rheumatologist privately as hubby had health cover. This was 25yrs ago when I was 44yrs and was only put on ibuprofen as symtems not severe,but but 5mths down the line was hospitalised for 3wk as couldn't get out of bed ,had intense hydrotherapy and came out with methotrexate and hydrochloquine. Treatment is better now as they tend to hit it hard with meds to stop joint breakdown. In my case I've had to have both knees and hips replaced plus shoulder and several toes fused. Wish the biological treatment I'm on now was around then.
Wishing you all the best for your appointment. Take care xx
Hi Pulfs,
wow. I have both hands pain and one wrist pain only. I notice that my legs and feet get very stiff in the morning too. I have a chronic neck pain and mild arthitis on it since 7 years. Plus chronic upper back, shoulder and arm pain. Debilitating. I went for lots of private Physio and my GP never really cared and dismissed me. So you have been very lucky. I'm glad you were referred for tests straightaway and that your Physio recognised the issue.
I'm so sorry to hear that you could not benefit from biological treatment at the time of your diagnosis I feel like I can't get out of bed most days. My pains have got so much worse, I can hardly sleep or walk. I can't do much anymore.
I can't believe you had both knees and hips replaced. My hips feel absolutely awful every day I can't cope anymore. It's very depressing to be in constant pain.
How did the replacement surgery and recovery go? Are they feeling better now? xxx
It's been good the replacements took pain away and I got my mobility back. 1st was 10yrs ago and last 5yrs. The replacements are still good and now I've been on retuximab for last 6yrs I'm feeling as good as you can be with this disease .
The 1st op I had 24yrs ago was a wrist fusion which has been ok no pain but can't bend it .xx
Forgot to say after initial consultation saw rheumatologist on Nhs.x
My then GP diagnosed me. When I crept slowly into his surgrey and he saw my bunches of bananas, swollen knees and explained how when I first got out of bed I felt as though I was standing on pebbles, he performrd some blood tests and put me on Diclofenac (a NSAID, this was over 30 years ago). He did consider Rheumatic Fever as I had no RF factor but my ESR kept rising until it was 86. Diclofenac helped a bit, but he referred me to the Rheumatology department, where I was prescribed my first DMARD, Sulphasalazine. Within one week the pebbles under my feet had gone, and I had hands again. Now I'm Seropositive and on MTX and Leflunomide with Prednisalone (for my Vasculitis, a new aquisition) and I have Osteoarthritis and Osteoporosis. Good luck with your treatment.
Oh my goodness...! Poor you. That sounds awful.
Amazing about the medication though
thank you very much xx
I had a single swollen knuckle that was noticed by a locum gp when I went for a birth control prescription. He asked what I'd done to it and I couldn't remember but thought I might have damaged it playing hockey. He sent me straight to the hospital for XRays and a blood test. I got confirmation of my diagnosis 2 weeks later. That was 36 years ago. Thank goodness he was training to be a rheumatologist.
Oh wow, bless you. It is indeed determinant for GPs or specialists to notice these symptoms in order to understand what it could be and send you to the right person and for the right tests. Sadly not all GPs care unless symptoms get worse or are visible as in your case. They often don't listen and dismiss you when it's early stages
I'm glad that in your case you were faced with a competent person and you were sent for scans and tests right away.
How are you feeling now? Are you on medication? xx
It took me GP six months to diagnose my RA, which I thought was very long, as I had a little one to look after at that time, I was low on Iron, GP wasn't bothered, so had a go at the GP, and finally got sent to the hospital. I was devastated, when I had it, but now I know I am RA Negative.
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