Just wondering if this process sounds familiar and how did you cope with it?
GP made erroneous diagnoses several times, I kept being sent away: it took 6 months before RA was suspected, despite worsening symmetrical pain in both feet across the toe joints, dry eyes, fatigue, massive swelling in ankles and an existing auto-immune disease - was told it was plantar-fasciitis and to do foot exercises with a frozen bottle, this being a heel pain not toe issue, which was in no way what I described to the doctor. Within that timeframe it spread to ankles, knees, elbows and hands. Only then did they think more of it when I saw a decent doctor who recognised an issue straight away.
First appointment with RA Consultant took 7 months after GP referral - when I went back the doctor who diagnosed me kept apologising, saying it's unusual to take so long and he kept writing letters to the hospital to attempt to speed it up. I've never had a scan of my joints, met my consultant twice in total and only just met my RA nurse after 2 years. Is that normal?
I am constantly being told I need to get the right meds early on and I am deteriorating quickly. Some of my toes are curling in badly, shoes don't fit right, all my joints make horrific cracking noises and are in agony, I can't walk, etc., you know the stuff.
The consultant initially told me I had an exceptionally high Rheumatoid Factor in my blood tests and this was indicative usually of an aggressive disease path - he referred to me as 'an interesting case'....he's not been wrong!
Do I just have to keep on at them?
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BJC1980
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Hi BJC, I would always keep on at them. I did/do. Politely, as I get forgotten if I don’t chase all the way for most things. It’s difficult at first when a diagnosis is not happening or you’re not showing rheumatoid factor which was my case. The rheumy has to be sure it’s RA before they prescribe those meds. That is far too long to wait to see a consultant initially and especially after your doc thought it was RA. Had it been confirmed with a blood test and you had to wait for meds even though you were diagnosed? It so, that’s awful tbh as well you know due to the joint damage which can happen in those waiting months. That occurred with my own situation, waiting for RA to show in my blood. No one’s fault, but frustrating. If you’ve been seeing the rheumy then you might not have needed to see the nurse. I saw a nurse early on then they changed policy where the more difficult cases had to her seen by the rheumys. Presume you taking an RS med but isn’t working as well as it should? You have to let them know if this is the case. Sorry to hear you’ve had a shaky start and hope all goes steadier soon.
Hi Neonkittie17, Yes blood tests confirmed a RF score of 328 and high inflammation levels. Doctor then referred me to RA Consultant and put me on Naproxen initially, but said further tests had to be done and he was not in a position to start drug therapy. Consultant put me on a combination of Hydroxychloroquine, Sulfasalazine and steroids to try and bring it under control - but yes, this was effectively 14 months after the disease began showing symptoms.
Now I am just taking codeine and naproxen, the DMARDS haven't worked and I was told to stop them. They want to try Methotrexate, but my liver enzymes aren't right. Just been told try another blood test in 4 weeks.
This is very frustrating for you and upsetting. You do need something more than painkillers and anti-inflammatories. By 14 months after diagnosis you’d want more, for sure, it terms of everything tbh. It is very disappointing to say the least that the DMARDs you’ve tried haven’t worked and you can’t try Mtx at the moment. I’m hoping they may decide on another type of med but normally you have to have tried Mtx and two other DMARDs for those. I hope in the new year your rheumy can make a decision with you for a better more effective way of treatment. 🤞🏻
Good grief sorry to hear of the rubbish way you’ve been treated. Be persistent and I hope your treatment soon improves.
I was lucky, I guess. My GP recognised my problem and referred me straight away. However, I know my situation is not the norm as so many people have told me about their struggle to get a diagnosis, and of course I’ve read more here.
Surely we should be past this by now. Isn’t it time GP’s were more aware of what is a relatively common and potentially severe disease, the outcome of which, is worsened by failure to diagnose early!
You certainly have drawn the short straw. This is terrible treatment. Pester them, be friendly but insistent. That is no way to treat a human! I wish you strength and positivity.
Yes, keep going and keep a note/diary of calls and visits to them etc. I was told by my cousin who was a nursing sister that my dealings with my rheumatology department are never straight forward and it should not be the uphill struggle it is to get something simple done. I feel it is the very same for you. Not meaning the present crisis, but over the years for me. They are a small hospital and have issues with admin (and a difficult militant nurse! Rheumys are all aware .. he is a militant union man!) I kind of resign myself to the fact it’s so often that way .. uphill struggle. It makes for anxiety each infusion time or trying to get in touch, as the secretary answers .. yup, whaddya want? .. when I say my name, if you phone them! Is your hospital short staffed? Poor admin? I don’t mean just in these difficult times. Wishing you much better times.
It took me 18months to be diagnosed we went from menopause to OA even though I was symmetrical however bloods not showing what they wanted to see. Yes I had menopause yes I had OA but I knew there was more going on.It takes time and GPS are GPS so in the short window they get with you they have to try and whittle it down to the most probable which is not always RA.
Consultant times this year have gone out the window too so I feel it is harder to judge timelines I was 3 months last year however my RA clinic I can contact and they advise when I need help.
Patience is part of RA life and you do have to chase and plan and even diarise how you are so you are ready for any questions too.
Sounds like you've had the rough end of the stick.
Personally I think you have to keep fighting to get treatment and I don't mean to disparage medical staff but they are so busy and in these weird times of covid I think its easy for them to presume you are ok if you don't keep reminding them.
I have a rhemy hotline and email and in my initial stage where I am not on any drugs (because I've had problems amd working my way through them) I use them and ask whats going on.
For example i was diagnosed in June and not controlled yet as you say we are told early diagnosis is vital yet treatment seems to take a long time 🤷♀️
I like my GP but anything RA wise she is open and says I must ask my consultant as her knowledge is limited. I appreciate her being so honest, better than thinking they know it all !
I've only had x rays no scans.
I would definitely keep on, its your life and joints and it needs sorting out; You can still be polite but firm that you need help .
I can relate only too well! What I find so infuriating in your case is the fact that you already have an autoimmunine disease!It took me 2.5 years to be taken seriously, despite presenting with all the classical symptoms. Then they did the rheumatoid factor test and, like yourself ,I was told it was exceptionally high. Also all the inflammatory markers. However, after this I then got to see a Rheumatologist within 4 weeks! At the start now I am lucky to be seeing them on a 6 weekly basis to see how things settle.
He was very apologetic about my case and the fact it had taken so long. He said he would start me on the methotrexate and prednisolone but as things had already progressed so far, could see there could be a need for more medications to be added, or a biologic.Also told me my case was very aggressive, which I already knew as , like yourself, I was in a terrible way!! I have some nodules and some fusion, and one knee probably needs to be replaced, the other not much better!
Hopefully now things will move more quickly for you.
Sorry to hear your story. Yes - on and on . If you don’t get help from the specialist nurse contact consultants secretary, - refer to the NICE ‘best practice’ guidelines for Rheumatoid . Do it quickly - before those clinicians who haven’t been moved to COVIID wards are involved with mass vaccinations
It took 15 years or more before my gp sent me to a rheumatologist .. won’t go into details.. unprecedented times means many are struggling but 2 years before you meet your nurse. ?? Having a good nurse can ease the way through your treatment. It took me 12 months to realise I-NEEDED YO BE PROACTIVE . If you don’t push you get left waiting. I’m not normally this kind of person but boy I don’t let go now no matter if they think I’m tapped. I email my consultants secretary and nurse ( been known to do it 2-3 times a week) I have said in the past if it was you suffering would you put up with it.Contact PALS noone should be left like this. Please let’s us know how you get on.
Yes, 2 years before I met the nurse via video call (totally understand the video call btw) - who now seems to be my main port of call. But she is saying they can do nothing until my liver enzymes show a level where I can take methotrexate.
There are other drugs it doesn’t to have be MTX not everyone can . Ask her to contact the consultant and ask for an alternative . Your liver enzymes may not change or change quickly enough what will they do then ?
Oh dear, it does sound as if you got the short straw this time. Having RA does teach you to be an active participant in your care as you need to be politely persistant. I agree with Marian, the doctors and nurses are not telepathic so you need to keep telling them how you are and what you expect.
Things were bad in rheumatology before Covid and now they are totally overwhelmed. The aim is to have one rheumatologist for every 85,000 people (ie probably 2,000 RA patients + other those with other conditions!) and there isn’t a single region of the UK who gets anywhere near that!!
So sadly you have to push. If the diagnosis is clear - which with high Rheumatoid factor and swollen joints it sounds as if it should be - then you don’t need scans to make the diagnosis. However they are useful as a baseline.
Have you not been offered any treatment at all?! After 2 years!!
I have been on several ineffective DMARDS prescribed by my consultant after my first meeting with him. Saw him 3 months later and he mentioned scans because my joints are showing signs of damage already. Then I heard nothing until my GP suggested I stop the DMARDS during a drug review as they are ineffective and causing blood issues. I then had to wait for an appointment with my RA nurse, which took around 4 months - obviously in all this time my body has become a wreck and I can barely leave the house.
Hope some comfort for you in my experience. I was terrified after I was diagnosed because I couldn’t walk more than a few steps or use my hands or anything. But once I got settled on the right treatment everything changed for the better and I am now 95% normal. Walk 5km a day no problem!
That's really encouraging to hear - the idea of being able to walk 5km seems ridiculous to me at the moment, so knowing the right treatment could bring that is a huge help.
You are one of the very lucky ones Helixhelix! 18 months and I've still not found the right treatment. Is 18 months standard do you think? I'm starting to get very sad about it all. Humiri been s brilliant but only for 9 months and within that time I've had 4 flare ups! Currently having one now! And 5 mg prednisone is not working, but with Covid that s my limit! But 4 Dmards 3 biologics and still not right. Do nit want jak inhibitors! Sorry Baz this is about you!
Sorry but I wouldn’t be going by what my GP says. I would have phoned Rheummy nurse and explained that GP wanted you to come off and what did they suggest
I think the GP was right - I had taken the DMARDS for 6 months with literally no difference in pain or condition and abnormalities in blood tests. At that time, my relationship with the RA nurse was non-existent. I didn't even know they existed. It's taken 2 years for me to be on the RA nurses spectrum.
Sorry, got sidetracked by a sparrowhawk trying to take one of my birdies! I meant to say ,yes you should definitely keep on at them, though you certainly shouldn't have to!
In the first year I had scans X-rays cat scan a droopler ( I think that’s the correct spelling) test, numerous blood tests. My bloods are always borderline so my rheumatologist looked for further signs. Up until this year the care I’ve received has been excellent. Keep pushing
Yes deffinately. I think pro active is the way . Trouble is that when you are in pain , feeling low etc its hard to take the reins. Especially at the beginning on diagnosis. My gentle advice is ....become as informed as possible about the disease ,the drugs and the process,read info on reputable web sites (NRAS, NHS, Versus Arthritis ) and be your own advocate. You will find a professional that you can trust eventually and hopefully a drug/drugs that suit you . All the best 🙂
I saw a GP - not my own - who fast tracked me straight away. I was told to contact him within a certain time (two weeks possibly but I can’t remember) if I hadn’t heard from the hospital. I think I got a letter from the hospital before I was seen saying they were running late, I got another letter saying the same thing. I assumed someone there was triaging for the worst cases but who knows. That was back in 2015/6 since then I’ve seen someone every year apart from this year - usually a locum or junior doctor - I’ve never seen the consultant I was referred to and I’ve never seen or been given contact details for a rheumatology nurse - I don’t even know if my hospital has them.
I take hydroxychloroquine so I have my eyes OCT scanned every year and take a print out along with me when I go to my appointment where it is scanned onto my file.
I had plantar fasciitis about four years ago - I felt it worst through my heel - it was the most excruciating pain I have ever had - it seemed to go from my heel to my brain. I consulted Dr Google and did everything suggested from rolling the iced bottle and contrast bathing to dangling my heels off the bottom step. Eventually my physiotherapist Pilates teacher suggested I give it a bit of a rest. That seemed to help and along with wearing good supportive shoes it hasn’t returned. So I’m the old lady you see in summer dresses wearing sports trainers.
I’d keep on at the department to remind them you are still waiting or get your GP to do it too.
Afraid so. Almost exactly the same senerio as me. 6 years later I have been on all the dmards and two Biologics lots of flare ups. Pain that is unbelievable . I moved home in 2017 had to change Rheumatologist and went through it all again. after 3 tears here he has decided I do have SEVERE R.A, will hopefully start new treatment in the New Year.
Sadly we have to take what comes . GOOD LUCK and Big Hugs
Yes as others have said you need to persist and gather as much information as you can. I was referred straight away from gp when my first symptoms started.got an appointment with rhuemotology 3month later,but was sent away with no action taken for 6months as bloods weren’t showing what they wanted to see.pain swelling and fatigue terrible.when I was seen again they said they thought it was wear and tear but I told him politely that I couldn’t agree and didn’t think I could wait another 6 months to come back.so he scanned my hands then and there and diagnosed me with ra.so I’m inclined to agree if you don’t push you’ll be left waiting and hopefully you’ll get on the right path with the right drugs soon.
When I first went to doctors they said it was down to my job ( waitress) and I need to rethink my job 😡 I moved and got new doctors and he sent me straight to hospital for tests and was diagnosed with RA ... you have to keep the pressure on until you get through to them or change your doc
I've had a solid and non-questionable diagnosis of seropositive rheumatoid arthritis for nearly two years - my blood tests were through the roof. It's the difficulty thereafter that has been the problem, ie seeing a Rheumatoid team or getting any treatment. I literally met my RA nurse 3 weeks ago after 2 years waiting.
Yes please keep on at them!That sounds just like my experiences with the initial diagnosis..Back in late 2006/early 2007 I had been getting pain in my right knee for a while.In may 2007 my hands started getting painful: wrists, fingers elbows, shoulders. Everytime I went to the gp he wasn't interested in my hands just my knee. I saw an osteopath about my knee and mentioned everything else and she suggested that it might be RA and to see my gp. I asked him tactfully if it could be( didn't want to insult him by quoting the osteo though) but again he ignored it and decided to refer me to orthopaedics re the knee.I saw her in the September and asked her to look at my hands. Immediately she said it looks like RA and sent me for a blood test. By Christmas U was in such a bad way another GP put me on steroids which helped until I got to see the rheumatology consultant the following Feb.By then I'd got joint damage in my left knee left elbow and left wrist and 2 fingers on my right hand.I can't complain about the treatment I've had from Rheumatology it was the fact that it took over 1 yr to get a diagnosis. I know GPs aren't specialists but I was so angry that I wasn't listened to. So much time wasted.I hope things can be sorted for you asap
Hi Baz,Blimey that s dreadful! Like you I had symmetrical pain started on left shoulder the pain was horrendous then the right shoulder continuing to left knee then right knee. The pain was debilitating never felt pain like it. My doctor assumed a had torn the cuff in the shoulder and ignored the knee pain. 4 weeks later I literally couldnt walk and ended up in A&E I had a blood test and it was confirmed RA. I had my first consultant appointment within 2 months of diagnosis.
Like you also could not take MTX due to chest complications with this medication and also was unable to take other Dmards so I was put on biologics. I'm surprised they haven't tried you on biologics yet, you can t possibly continue in that amount of pain and experiencing joint disfigeration in your toes. Not to mention coping only with codeine and steroids. I had a good 9 months on Humiri when it worked well but unfortunately to no avail any longer! That s the problem with RA drugs they may not work and when they do, not for long! It can be so disheartening battling the journey with this nasty disease. But have faith that drug is out there for you. But absolutely you get demonstrative now Baz, ring up your rhemy nurse explain what s going on and ask her to pass on your message to your consultant. I'm in exackly the same situation as you right now, taking codeine and I've just started taking steroids ( low dose) until I get a telephone call from consultant.
Thanks Jaxine - had a call from my RA nurse yesterday, as I got to a point I could not take the pain any longer and literally called and emailed anyone I could. She was reluctant to put me on steroids, despite me asking and said only a face to face appointment would allow steroid prescription so she could see the swellings - like I take Prednisolone for fun. I have bursitis in my knee from inflammation, my ankles are twice the size, elbows and hands in such bad pain, I could not even wash myself, put shoes on, etc. Was told to wait until RA appointment 31st of December. Luckily, my GP was a lot more understanding of my pain and I have 6 weeks of steroids - 3 days in I am already so much better.
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Any one have experiences with the JAK medicine Baracitnib ?
Now I'm really confused...
Finally got a begrudging referral!!
RA in sacroiliac joint?
