Rheumatoid arthritis

[AnyaMarx]

Anyone any words of wisdom .

I'm 51 . Always been fit , active and healthy .

For a year I've been debilitated by flare ups of swollen joints and excruciating pain, started with one knee , now it's one knee and both ankles .

It
Literally feels like someone has taken a hammer to
Both ankles and I'm now presently unable to get
Up or
Down stairs, driving is problematic, and rest does help but then the minute I try and become active again , I'm talking a dog walk - I'm crippled
Again.

Has anyone any advice please? I've gained weight . I'm fed up . I'm currently off sick from work again because the latest flair up has affected both ankles plus my knee .

I'm so fed
Up . I'm waiting for
An MRI on my knee and X-rays to
Come back on ankles as the ankles only started 2 weeks ago but I can't get up or downstairs without being on my backside .

Ask for a private referral. I’m 55 and had 10 years of the same struggles (and mine even started in my hands!). 1 private appointment, diagnosis, and treatment.

The bad news is, it’s still going, they did say it had been left to run riot for too long, but the treatment helps.

I can’t have steroids (heart attack at 51 - possibly accelerated by inflammation caused by the RA) but have weekly injections and daily anti-inflammatory meds (hydroxychloroquine - Trump thought it beat off Covid - I currently have Covid 😂).

This is horrific for you it really is.

It's not great for sure, but there are many far worse off than me.

My gp/nurses kept telling me it was post partum aches as I'd just given birth, I got so desperate I went private and they diagnosed me and I then went back to my gp and they sent me straight to rheumatology 🙄🙄 because a new mother at 27 was highly unlikely to have RA (this isn't true) it's ruined my life

Well apparently my chest X-ray is normal and my bloods are normal apart from low b12 and low folate.

Now what ? Does this mean it's definitely not RA or something like it ? Lupus ?

I'm so bloody fed up . I feel like I'm never goi g to get to the bottom of this .

It would be lovely if a B12 injection could sort it out for you! A rheumatologist may still be the right specialist but a general musculo-skeletal specialist would likely be able to investigate further. Have you seen your results and CRP/ESR levels? It should be on your GP to continue investigating and not fob you off so you should definitely be offered a follow up appointment (or book one if not, preferably with a different GP)
If you can self refer to physio then that could be worth doing and if they write to GP with their opinion it may improve chances of going to the right place!

Is low b12 anemia?

If so it's another symptom of RA .

Anemia is low iron I think.

You should stil ask the GP for a rheumatology appointment. You can have inflammatory arthritis without the rheumatoid factor which is why diagnosis requires examination by a specialist.

Also, you've not said if the GP had done the Rheumatoid factor and Anti CCP test anyway? He/She should be able to order these.

I understand your pain (literally) and frustration.

I was told by a locum GP that I just needed to lose weight, when I first approached them asking for help. After a further four or five months of struggling on, I saw my usual GP, saying I was losing weight, but the pain and stiffness was just as bad. She arranged blood tests and it came back with huge RA indicators.

I went through many medications over the years, including methotrexate, and when that failed, sulphosalazine. Then that failed and the rheumatologist tried me on something else (I can't remember what it was).

I had an appointment with the rheumatology nurse after about six months, and when she asked how I was doing, in my usual way, I was breezily saying "yes, I'm fine", when in fact I was in excruciating pain. She gave me "a look" and said "ARE you?"

I burst into tears saying "no, everything's so painful". I got a telling off for not saying anything sooner and I was then upped to Enbrel weekly injections. There were various hoops to jump through to be accepted for this, due to its high cost. One of those hoops had to be that you had tried methotrexate and that it had been unsuccessful.

They were AMAZING for about five or six years, but ultimately they stopped being effective, and I was upped again to Rituximab infusions, which I call "my magic medicine". It is delivered in two doses, two weeks apart, as a day patient in hospital, and they are done every six months. I am literally symptom free with them.

Over the pandemic, they were stopped, and it took until November of last year for the symptoms to reappear. And boy did they reappear. Within a couple of weeks, it was so bad that I was bedbound. Couldn't get dressed, couldn't raise a brush to brush my hair, couldn't wipe after using the toilet, couldn't open my mouth to eat. It was awful. Thankfully I am back on my Rituximab regime and 99% symptom free. I've only had one set of doses, and due the next round in June.

I really hope you can get some answers to your pain, even if it turns out not to be RA. I wonder - would you be able to pay for a well woman check up with BUPA, to have some comprehensive tests run?

Pain is such so debilitating, and the thing is - you don't even "look ill".

Don't be like me, and not say how much pain you're feeling. You need to be vociferous and really push home how much this is impacting on your life.

When I was in the first throes of being diagnosed (I was in my 40s), and still trying all the medications that were failing, it was literally the only time in my life that I seriously considered suicide, as I couldn't contemplate the next 40, 50, 60 years in that degree of pain.

I've asked twice for a referral to a specialist and been refused twice .

I do t know what else to do .

I've got printed out the NICE guidelines so I think my next step is to go back , and ask again if they will refer me and if they say no I'm going to out my phone on the desk on record and ask them to explain why they are not following the guidance given by NICE and for them to either record the reason for the refusal or to put it in writing with their reasons .

I have the swelling , stiffness , pain bilaterally, the lung issues , I've had an ECG for heart pain and been bollocked for not going to a&e when I had that , I've got anaemia, during a flair up my joints go purple with all the veins standing out and it looks like sepsis, the joints are hot to touch , with rest the pain and swelling subside but not completely. I can't move my feet from side to side and if my ankle's accidentally touch in bed the pain wakes me up with a start a if I've just had an electric shock .
I'm slow to move , walk and cannot climb slopes steps or kerbs , I'm out of breath , coughing and wheezing, I e had pneumonia, and all of this is within 14 months . It came on suddenly and the Dalit ups now happen quick to er days , to the point I'm debilitated.

All of these symptoms are on the nhs website and can be symptoms of R A . And yet I'm still being dismissed and refused help .
I e even told them my livelihood is at risk and I live alone so this is a major issue for me .

They simply do not care . I'm given platitudes and inhalers , X-rays, none of which show anything. I've had issues with my lungs now for 6 months, had excruciating heart pain twice that stopped me in my tracks and had ECG for that , and widespread inflammation is a symptom and that affects heart and lungs .
They just won't listen .

Sounds awful. As another poster said, you need blood tests for rheumatoid factor, anti CCP, ESR and CRP done if the GP has not run those tests. The rheumatologist should run ana, immunofluorescence test. Rheumatoid arthritis is systemic like lupus and Sjogrens and can present in any joints. I know 10 people with RA, 3 well and the other 7 are acquaintances. All affected very differently. If you can't get any joy with the NHS it might be beneficial to go privately for an initial diagnosis which I know is not affordable for everyone but then you can be referred back to the NHS rheumatologist. Good luck

I think I'm actually beginning to co aider a private consult now because truly I cannot go on like this .

Has anyone done that ?

Who do I ask to see ? And costs ?

You could try the Versus Arthritis website. They have a chat and phone helpline. They maybe able to help with finding a private rheumy or check out your nearest hospital that has a rheumatology department and find the names of the consultants then Google if they have a private consultancy. Mine does!

I think it's around £300 ish but with bloods could be more. You can always ring or email for costs.

I've just done that. After 2 years of NHS offering nothing more than a physio worksheet (which I've followed every day) I've taken a loan and had private consultation, x rays, MRI. (That cost £1000 more or less.) Like you, I've gone from mobile to needing a stick in the house even, and clinging on to furniture like a toddler learning to walk. I've put on 2 stones and I can't bear it any longer.
Turns out both knees are bad, one needs replacing. I've seen the scans, the bones is deeply pitted, meniscus gone, cysts in bone, physio can never help it and neither will NHS. It's been a nightmare. I really hope you can get someone to listen to you, good luck.

So sorry you are going through this. I was refused an NHS referral by my GP so went privately. He referred me, it was about £250 I think. The rheumatologist sent me for X-rays , MRI and blood tests on the NHS then I saw him again privately and then on the NHS. He decided I didn’t have an inflammatory arthritis.

I then saw another privately as my Dad was diagnosed very late in life with psoriasis amd it turned out my brother, aunt and cousin also have it and what I thought was dandruff after pregnancy years ago probably wasn’t. This time I found someone who specialises in psoriatic arthritis. Previous rheumatologist had ignored MRI showing previous inflammation on sacroiliac joint apparently which was very annoying. I emerged from consultation second time around within a diagnosis of psoriatic arthritis.

She was £220 for initial consultation then £120 for follow up and I am now NHS and being seen tomorrow. If you can find a way of affording it I would ask GP for private referral but do your research on who to see. Take plenty of photos of swollen joints meanwhile and keep a rough diary of symptoms.

I've got loads of
Photos of swollen ugly ankles all purple and veiny and disgusting!

I am so sad as was looking at me a year ago - muscular, fit , slim .

🥲

And my disgusting wheezing

Has anyone done that ?

Who do I ask to see ? And costs ?

My private consultation was £175 in 2017. I asked for the names of the Rheumatologists at the hospital and phoned their secretary to see if they did private consultations and then booked.

Got an appointment within a week.

Where are you based @AnyaMarx ? I can recommend an excellent rheumatologist at St Georges in London if you can get to see him (it would be a case of begging for a referral or maybe getting a private GP to refer? and then talking to his secretary to get pushed up the list) the musculo skeletal clinic in Sutton is also very good for thorough investigations. My knowledge is from a while ago when I was diagnosed and in south London, I now live up north and the arthritis clinic at Chapel Allerton in Leeds is good there are consultants who really care and are interested there, I was referred there out of area for being a difficult case (haha)

Oh also meant to say the nras helpline is good. That's actually where i got the recommendation for my good rheumatologist after seeing one who was less good at a different London hospital who had very little interest in helping me (long story! Basically I wasn't 'eligible' for biologic medication due to only having ankles and one knee affected and he wasn't interested in pursuing it or really trying to get me on drugs that would work. Such a contrast to the other Rheumys I have seen who will do everything in their power to try to help e.g. disgnosing as Psoriatic arthritis despite no Psoriasis)

Definitely chase hard on the medical side.

For exercise swimming is by far the best for rheumatoid arthritis. My mum has had it for nearly forty years, she swam 6 days a week for most of that time. When covid hit she couldn't swim and her health has now deteriorated to the point that she no longer can, though she has had some hydrotherapy which has been brilliant.

That would be great if I could swim

I'm thinking of buying a bighbrid bike and maybe trying g to get out off the road a bit if I can manage it .

Does anyone here know what the serum rhematoid antigen level should be. I see my results are less than 7000 u/l its says higher thsn normal bit doc not ever contacted me. That was 5 years ago. I now have v painful hands white bumps on knuckles and terrible stiffness and painful in lower back hips. Can anyone advise please ?

Guys can I ask - I'm half way through a course of oral steroids for my wheezing but it's actually had an effect on my pain and swelling in the joints - now it's only a 5 day course so I'm not expecting it to last - but is this significant at all? The steroids are making my pain and swelling/stiffness better .