Give me the strength to deal with life: Last year I... - NRAS

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Give me the strength to deal with life

dreamlady profile image

Last year I spent approximately six months with problems with my knees; I couldn't see a doctor and be only able to talk on the phone; he kept referring me to physio, but the physio said it was inflammatory, and the doctor just wrote it off. Eventually, I had an x-ray, which showed minimal wear and tear and some evidence of inflammation, still written off. I requested a second opinion, saw a locum, and was referred to orthopaedics; finally, I was listened to, but it was calming down by then. Still, I knew I wasn't going nuts. Guess what the problem with my knees is back; I crossed my fingers and hoped that it would just go away, but it hasn't this time; I have bypassed my doctor straight to a locum, fingers crossed that he will take more note of what I say.

Then yesterday late afternoon, I received a call from my surgery to book me in for my annual RA review; I have never had a review with my doctor not in the last eight years, so why all of a sudden now. What worries me is that this is the same doctor who, a month or so ago, when I last saw him about extreme fatigue following a complete blood workout, said that I would have to live with it as the blood results showed no problems. I questioned the fact that my inflammatory markers were raised, but that was dismissed as they were not that high; I came back that they have never been exceptionally high. His response silenced me; apparently, I probably don't have RA if I have never raised inflammatory markers. This now fills me with dread for my upcoming appointment in June. Is he going to repeat his assertion? Is he even going to examine my joints or do a visual scan as he did with my hands and say they are not swollen when at the time, they were causing me issues?

Oh, the joys of seronegative RA that plays to its own rules.

35 Replies

This sudden enthusiasm for an RA review seems to be nationwide.

I politely refused as my GP has no idea what Rituximab is….& as I have only been with this practice for a few months….they probably didn’t even know I have RA…until they were told to do the review…..& I would would find it very difficult pretending I believed they knew what they thought they were reviewing.

I know they don’t read the letters my rheumatologist sends after I have a check up…..so why waste everybody’s time?

The receptionist was quite happy when I said No thank you….so if you feel you’d rather not have the review with an unsympathetic GP, & just see the locum you trust…I’m sure they wouldn’t try to force you to attend.

Good luck what ever you decide!

Boxerlady profile image
Boxerlady in reply to AgedCrone

Just back from my GP RA review; you were right, AC, complete waste of time! Nice enough GP (I have seen him before for another matter) but it was obviously just a box ticking exercise; just hope that they do something useful with the money it earned the practice!

AgedCrone profile image
AgedCrone in reply to Boxerlady

Of course they are….all the grey suits waiting to get another zero added to their pay cheque…whilst junior nurses shop at food banks…….unless somebody who lives in the real world grabs the NHS & shakes it really really hard …..nothing will change….ever!

Do be insistent at your RA review that your symptoms are properly considered. Your joints should be examined, particularly because you are sero-negative; we know that inflammation markers on blood test do not give the full picture. Just because your hands are not badly affected yet (mine were not initially but are now) does not mean your other joints should not be properly examined. My RA started in my larger joints (shoulders, knees, back) so I was diagnosed with Polymyalgic onset RA.

Ask for a referral to an NHS rheumatologist and, if the GP is not keen on doing that, ask to be referred for a private consultation with a rheumatologist who works in both NHS and privately (most do). After the private consultation and diagnosis you can ask to be transferred to the NHS list if you need ongoing treatment. I did this back in 2018 because the wait to see an NHS rheumatologist in my area was too long for me to cope with as I was struggling to live independently. It worked a treat! The initial expense was well worth it to get started on treatment quickly. If you can get the GP to run new blood tests, including ESR and CRP and RF or anti-CCP if possible, those results will help to reduce the overall cost of having to go privately initially.

Good luck.

AgedCrone profile image
AgedCrone in reply to Lolabridge

But what’s the point….unless a GP has an “interest” in RA…..or has had many RA patients on his list, we will know more about the condition, and certainly a lot more about the drugs than he/she does…. after all …GPs aren’t even allowed to prescribe the most potent drugs..Most GPs know very little about Biologics …which do seem to be the future for RA.Yes, going to see a Private Rheumatologist is of course the way a lot of us get treatment…but in today’s economic climate ….finding a few hundred pounds is not always easy.This review seems a way to make us think we are getting noticed…having been the poor relation for the last XXX years….although we must cost the NHS & the economy….thousands……with joint replacements & lost work hours.

I guarantee nobody on any sort of GP committee was banging the drum for RA patients to get more information or advice all through Covid…even our rheumies didn’t seem to read the NHS directives…….& GPs certainly didn’t want to know.

Just look at how the priority lists for first line treatments seemed to miss out so many RA patients……most people with RA are constantly waiting for appointments but with Rheumatologist not GPs…..

Lolabridge profile image
Lolabridge in reply to AgedCrone

Your situation AC is different as you say you have an excellent relationship with your Rheumatologist and don’t need the support of your GP in accessing help for your RA.

Dreamlady is having problems getting her GP to recognise her sero negative RA issues and is not being listened to or getting access to a Rheumatologist. In which case having the RA review gives her the perfect vehicle to be assertive about asking for her increasing joint problems to be taken seriously.

In your situation Dreamlady I would go to the RA review with prepared notes on your issues and how they have developed over the years, include the physio’s and X-ray report inflammation observations, and list the questions you wish to try to get answers for. I hope this will encourage your GP to make a proper examination of your joints or refer you to a Rhematologist. You could leave a copy with the GP to have it put on your records.

Good luck 🤞🏻

AgedCrone profile image
AgedCrone in reply to Lolabridge

But my point is…. as BL says…she has been for her review & it was not at all productive.DL has tried to get a rheumatology review referral from her GP who obviously has no special interest in RA whether + or -……..so I don’t think it sounds as if he is the sort of Doctor who will willingly listen to a list of notes.

In reality….the GP DL saw is not not likely to change his mind easily …however, if he gets a report from a Rheumatologist saying a situation exists he is far more likely to come around…but he still won’t have the knowledge ….so will have to liaise re treatment with the Rheumatology team….which is whatDL needs.

But as I think I said…if DL has the option to see the locum doctor she liked….maybe she will get her referral?

But if she can’t see that locum…. her regular GP appears to have no interest and will not write a referral letter, it maybe time to ask to see a different GP?

dreamlady profile image
dreamlady in reply to AgedCrone

I have just come back from the doctors, where I saw a locum about my knees; he acknowledged that something was going on, he didn't think it was the RA because there was no warmth in the joint, but he did give me a steroid injection to the knee as there no painkillers I can take. I am just hoping that it will just calm everything down again so that I can walk again without pain. Fingers crossed.

Lolabridge profile image
Lolabridge in reply to dreamlady

I'm glad your your locum GP listened to you and took action so your knee problem will have been recorded. If you have further problems in the future that record may help you and, if necessary, you can ask to change your GP. Unfortunately AC is correct in that most GPs don't know much about RA. Recent press coverage has reported that chronic pain is not taken seriously enough by many medics. It's been proved to be more often dismissed for us women sufferers if the medic is male apparently!

I do hope the steroid injection will help you.

AgedCrone profile image
AgedCrone in reply to dreamlady

Have you thought of speaking to one of the rheumatology secretaries at the hospital you attended & explaining as you have here…that the GPs & locums you are seeing don’t seem to know much about sero negative RA…& don’t seem to understand you need a trained rheumatologist to see you …to prescribe the right drugs & emphasise what pain you are suffering. Steroid injections are of course useful, but you don’t want to rely on them forever do you?

Keep,pestering…….it will pay off in the end,

Deeb1764 profile image
Deeb1764 in reply to dreamlady

I have down to bone on bone knees and at some point will have an op.However this is osteoarthritis not RA . I went thro loads of drugs and at one point it was only diclofenic that worked but then that stopped. I have sero positive RA . You don’t mention if anyone has just pointed out it could be OA not RA in knees at your GPs? My RA consultant leaves my knees to my GP as it’s easier and not RA based.

dreamlady profile image
dreamlady in reply to Deeb1764

The problem is with the meniscus, my doctor won't prescribe Naproxen, and I have adverse reactions to codeine and co-codamol. I have to deal with it, although I have just been given a steroid injection to see if that helps.

Deeb1764 profile image
Deeb1764 in reply to dreamlady

I know it is so hard to find a drug that works I have gone thro a lot for RA as react badly to so many. I have been told steroid injections m ight be the way forward but at the moment I have to use oral pred for RA issues, so most of the time my knees don't play up as much. Though the past week they have been bad. I start next week swimming to try and strengthen the knee muscles up again as this is key too.

Good morning, I am like you a seronegative, never have really high CRP bit am most of the time feel unwell. I have a few times gone private for a consultation and like our friend been seen quicker back on the N.H.S.. MY inflamation marker is never over say 8.9. except after operation. worth thinking about. Hope things improve.

Have you not spoken to your rheumy team ? You don’t mention it so I’d give them a call and see what they say, I find my GP has a very limited knowledge where RA is concerned. I hope you get some help soon.

AgedCrone profile image
AgedCrone in reply to KittyJ

If you are replying to .DL KittyJ….I don’t think she ever got to see a rheumatologist…..her GP refuses to refer her…because her inflammatory markers are not raised.

KittyJ profile image
KittyJ in reply to AgedCrone

In a previous post they talk about seeing a rheumatologist, that’s where I got it from 😊

AgedCrone profile image
AgedCrone in reply to KittyJ

Ah…I just went on this post.

You don't have to go. My GPs are utterly useless, so I'd be inclined to give it a miss. They left me in pain for years, so my trust in them is less than zero. However, you must do what is right for you.

Its no fun is it when your in a flare and it doesn't show in your blood as i well know darling. Good luck with your review. xxxx

I used to have annual GP reviews . It was not about reviewing any RA treatment - but about screening for associated risk factors -,cardiovascular, osteoporosis etc. which are not covered at rheumatology reviews.

I fill in a form every year telling my GP the impact my RA has on my life and other bits and pieces total waste of time I don’t think they read it. If it was me I’d give it a miss and avoid the associated stress. I take it you have a rheumatologist on the case so GP’s are there for any general problems not RA specific. My GP doesn’t read any letters from immunology or rheumatology and have no idea about me.

Now you’ve got this appointment is there any chance you could get your bloods taken prior to the appointment so they have fresh results at the fingertips at that appointment, would your gp do that for you?? You’ve got a bit of time really worth trying….

Reading between the lines, I’m assuming you feel you have seronegative RA, but have never been referred for investigation. The nice guidelines make it clear that normal inflammatory markers should not prevent an urgent referral if you have suspected synovitis. I would be tempted to refer your GP to the guidance. Your other option would be to initially get a private referral with one who also works in the nhs. Waiting times for rheumatology appointments are horrendous these days, thanks to covid. Here’s an article about the guidelines.

guidelinesinpractice.co.uk/...

I used my annual review appointment to teach the GP about Rheumatoid Disease. It had been delegated to the useless GP in the practice who previously had stopped all my repeat prescription drugs, so I was determined to take the lead and make sure that he knew that I was managing my condition with advice from the rheumatology team! He seemed quite bemused....

silentpool profile image
silentpool in reply to oldtimer2

Gosh I thought it was just me - GP kept declining my methotrexate repeat prescription - I was only saved by the receptionist and duty doctor, twice!! Anyway finally spoke to a GP who has very kindly removed the block on my repeat prescription. It is really bad because it was prescribed not by the GP but by the rheumatologist , last review last October so no excuse for this interference - I wish they had shown this level of interest in my husband before his cancer had progressed beyond the point of no return.

Sorry. Have you actually seen a rheumatologist and been diagnosed? If not may be worth going to appointment and insisting on a referral? Still a long wait though if in pain. Apologies if I misread your post.

I was diagnosed eight years ago with sero negative RA, when needed I do contact the Rheumatology department but they say I should speak to my GP, not seen anyone at the hospital since 2019 and had two online appointments at the beginning of 2021 but nothing since so I just soldier on and do the best that I can

AgedCrone profile image
AgedCrone in reply to dreamlady

Oh I got the impression from your original post that you had never actually seen a rheumatologist.As you have actually attended the Rheumatology department, I would definitely call the Rheumatology secretary …have your hospital number to hand, and if you can remember the name of the rheumatologist you saw ………then explain the situation that you’ve got all the symptoms of seronegative RA but your doctor doesn’t seem to understand that inflammatory markers are not the only sign he needs to look for …so could you please have an appointment to see somebody on the Rheumatology team for a check up ……as you haven’t been seen for so long.?

Try not to be put off if they try to refer you back to your GP ….just explain firmly again ……that he does not seem to understand zero negative RA….& that you are in pain and are feeling very unwell!

Good Luck!

Lolabridge profile image
Lolabridge in reply to AgedCrone

If you read Dreamlady's Profile you will see that she has been diagnosed and treated by a Rheumatologist in the past.

AgedCrone profile image
AgedCrone in reply to Lolabridge

Yes ..I just saw that…my response is the same……to pester whoever she feels will listen until she gets to see someone qualified to help.I think her GP has backed himself into a corner by proving he hasn’t investigated RA sufficiently so he won’t back down now.

Of course it shouldn’t be necessary, but we all …including me….have had to stand our ground when we know we need attention..but GPs try to blind us with science…,..keeping one’s cool & not giving up is sadly necessary…especially it seems in rheumatology.

CripLady profile image
CripLady in reply to dreamlady

Hi. I would contact your Rheumatology Team and INSIST on an emergency appointment [explain your GP lacks the requisite knowledge]. I too haven’t seen anyone F2F since before Covid (not a prob for me though, as I am pretty stable). But they do have Emergency Appts. A steroid injection will prob only give you relief for a couple of days. You need a longer term solution.

Lolabridge profile image
Lolabridge in reply to CripLady

Totally agree with Crip Lady for the reasons she gives. Insist and pester to get an appointment with your Rheumatology team.

AgedCrone profile image
AgedCrone in reply to Lolabridge

Pester yes…but believe me…insisting is unrealistic….if you get a negative answer you have nowhere else to go have you?You are hardly going to storm into a clinic& refuse to leave now are you?

You could of course involve all sorts of committees…but I wonder what sort of doctor patient relationship that would produce?

My rheumatologist always says a GP is a GENERAL Practitioner. Insist that they refer you to a Rheumatologist for an Emergency Appt. They cannot claim you don’t have RA as they are not specialists. Be assertive and Good Luck x

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