Hello from a confused mum with sieronegative RA

antuneleta

Hi all,

new to the forum here. I started this journey in January when, on holidays in Brasil, suddenly, one of my knees got swollen. Back in the UK I saw an orthopedic and then a rheumatologist. I had an injection that fixed it. they thought it was osteoarthritis as I have a few mechanical minor damage in my first knee.

So, I though, it was sorted. But no...

Since then my knees got swollen two times. Doctors investigated the case and think it is a case of sieronegative RA.

Until now I sorted everything with the private insurance my work pays as a benefit. But since they discovered I have a chronic condition, they refuse to pay for the treatment. Today I have a massive flare and I cannot walk. I call them to approve another inejction to my knee (this knee had two injection since the start of the year and they approve up to 3) but they refused. They are not going to pay.

I am alergic to antinflamatory meds. I tried sulfasalazine and I had a massive alergic reaction (sulfasalazine was not covered by the insurance as I did not make it in time to get to the first check). I know I have to get methrotexate but still waiting to get to the first appointment with the NHS, which is happening in more than a month time.

So now I am here, with a swollen knee, not knowing what to do :( Not knowing how long it lasts (it is a week already but so massive since today). I know it can go up to one month and then I had the injection. Not sure if it can last much longer.

Oh, and I have a toddler which requires so many attentions and I cannot even run after her which makes me so sad :(

Anna

Hello @antuneleta and welcome to the online community.

As you probably know, with seronegative RA it can take longer to diagnose and begin treatment because it doesn’t show up in the usual RA blood tests. You’ve been in pain for quite a while and it must be very disappointing to have your treatment stopped by your work’s insurance company. While you’re waiting for your appointment with the NHS, could you try some over the counter anti-inflammatories like ibuprofens or aspirin? If you’re not allergic to them, they might stop some of the swelling and pain.

I’m sure that many of our members can understand how you feel and will respond with supportive advice. Meanwhile, perhaps you’d like to take a look at the Versus Arthritis website section on managing pain. There might be some tips that help:

https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

All the best, please let us know how you are getting on.

Anna : )

JoeB

Your NHS GP and practice still has responsibility for your well being.

Many GPs can do these injections.

Some GPs actually have what is officially referred to as 'a special interest' in Rheumatology.

This special interest part is often abbreviated to GPWSI. Usually such details are listed on the practice website or their online presence via NHS Choices. This does not qualify them as specialists but they can provide a useful bridge whilst waiting.

That said the absence of a special interest in Rheumatology does not preclude their ability to give intra-articular injections.

Some physios can also do them but the wait is likely to be longer (as if that were possible).

Whilst GP appointments can be rarer than hen's teeth the sooner you make enquiries in this regard the sooner it will be resolved.

However, I would also be inclined to dedicate some time to reading the small print of the policy - particularly exclusions and limits. At the very least ask the insurance company to put the reason in writing and direct you to those exclusion or limitation clauses.

Arthur

antuneleta

Hi all, thanks for getting back to me. It has been an intense week.

I have called the Versus arthritis help line and I had some answer! last week I have been seen by the rheumatology department of my local hospital. They injected my knee with cortisone but it is flaring again :( and I have started methotrexate.

To answer to your comments: my gp does not have interests in rheumatology and there is nobody qualified to do the injections. I am having a flare every three/ four months since jan so I have to find a solution. I do realy hope the methotrexate will work.

I cannot take any NSAIDs. I used to take CBD for the pain but I have stopped as I do not know if it interacts with my therapy.

Insurance, It is a fight I cannot win. My small prints say they should provide support for acute inflammatory emergencies also for chronic diseases but they continue to refuse. I talked to the line manager of the person that refused but they do not want to progress. How to fight against a giant? My last injection did not work. IT is the second time this happen to me (each time in a different knee). Has this happened to anybody?