Diagnosis

[Yodawalls]

I am having trouble getting a diagnosis due to covid 19 and not being able to see a rheamatoligist face to face. Everything ive read on NRAS website says that RA needs prompt action but my reamatoligist spoke to me on the phone for 20mins and then said there was little he could do right now and to get back in touch when things go back to normal with the world. My blood work showed possitive RF factor but no CCP antibodies and having read things on the NRAS website im showing key symptoms of RA. Should i be concerned about having diagnisis and treatment delayed so significantly or should I be less concerned?

[Hidden]

Unfortunately getting the kind of meds we need makes us vulnerable and need constant monitoring at the beginning. I have been just taken off one if mine due to problems I can’t change my meds at this time like you because of covid. A lot of medics have been redeployed so they are running on skeleton staff )rheumatology was short staffed before) There are a lot of people not just with RA but other problems left in limbo . Don’t stress it makes your RA worse ( easier said than done) rest and don’t push yourself damage can be done during a flare. Sorry not much help. Any questions please ask this forum is brilliant and everyone gets it

[Hidden in reply to Hidden]

Perfect reply and an add on if lots of pain ask your GP for something to assist till seen

[sylvi]

You can make a start yourself by getting vitamins like glaucosomine, Omega fish oils, Turmeric as well they are not a cure only as a supplement . Until this virus is over nothing sadly. Sorry i can't be off any more help.xxxx

[Greencat96]

Hello Yodawalls. I am in a very similar situation. In February my GP thought that I presented symptoms of RA. I was referred through the NHS but there is a 5 months waiting time to see a Rheumatologist. I decided to pay for a private consultation, it was expensive (£230) but I saw a consultant on the 13th March.

My blood test results look to have a similar pattern to yours. The consultant was not able to diagnose me and told me to have an ultrasound of the inflamed joint as soon as I had a new flare up. She referred me back to the NHS and said she would still be my consultant (but under the NHS). She was going to refer me to the Early Arthritis clinic of my local hospital with only a two weeks wait. Unfortunately the pandemic happened and (understandingly) everything has grounded to a halt.

The first few weeks of thinking I may have RA were really difficult. The floor was taken from under my feet. I live alone in a village where there are only two buses a week so if I can't drive I am really isolated. When I had a flare up in my hands (one after the other) it was terrifying: I couldn't turn taps on, open doors, nor could I undress/dress without great pain.

I would advise you call the NRAS helpline. I called them a bunch of time and spoke to a lady called Caroline who was really reassuring, She also gave me practical tips to deal with the NHS system.

I keep a flare up diary that the Rheumatologist found helpful so this is something you could do now (I put the data in a table: a column each for start date, end date, joint affected, pain (1 to 10), whether it was red, whether the joint was swollen and a note column).

I have had a few flare up since, the pain has been quite moderate inn comparison with other times but the fatigue has really been intense. I was off sick for a couple of days last week.

I called my GP who gave me a flexible sick note for three months. This means that I can legally work full time when able but am covered if I need time off. I didn't know this existed. I am really relieved to have this as I love my job and would really much prefer be at work but some days getting out of bed, showering, etc... feels like climbing a mountain. I hate it but will have to come to terms with it as some point or another. It will take a while... And in the meantime, at the back of my mind, I don't know for sure what is wrong with me. Another thing to learn to live with!

Sorry for the length of the post, I hope you have found this helpful. Hang in there, there are many RA sufferers who lead full lives Caroline told me.

[Yodawalls]

Thanks to everyone for replying and especially to Greencat for taking the time to empathise with me, explain there own experience and offer great tips going forward. I was considering paying privately also but I think I may reconsider now. Keeping a diary is a top tip and I shall do that as of today. I asked the rheamatoligist straight up if any damage will be done to my joints because of this delay and his response was "hopefully not". Its hard not to panic when everything you read tells you not to delay treatment. Thankfully ive only experienced a couple of flares but its scary how fast im losing strength in my hands. I thought i was going through an early menopause so was shocked when my blood results came back. High colestrol and over active thyroid too. I find myself having to explain to family that RA is a little more serious than just getting older. I have always suffered with suicidal ideation but have found the last six months scary as my depression has hit an all time low and ive started acting out on those thoughts. I try and sleep as much as possible which is not hard recently. Anyway, like people say its a scary time for everyone across the world and people are dying from covid/19 in tragic circumstances, alone and frightned, leaving loved ones distraught and uncertain what the future holds. Take care all.

[Rashford20]

Hello, I was also recently diagnosed. I was in the fortunate position that I could pay private and it was well worth. It sped up the process massively! I believe the standard wait time on the nhs was 5-6 months to see a specialist if you’re referred as ‘urgent’. This would be pushed back massively now because of the pandemic. I phoned the private surgery and had an appointment with a rheumatologist in 3 days, he did a quick check and ultrasound confirmed it was RA and invited me back the next day for injections which helped massively. He then sent me for further bloods and an x ray, wrote to my gp to get some pred tablets and put me on methotrexate.

I believe the initial consultation was maybe £250-300, I had 3 injections at £84 each, and I believe the x ray and blood test was about £70-80 combined. I also had another ‘phone’ consultation and don’t think I’ve received an invoice for that yet so not sure if they charge anything significant.

For the sake of health it was a small price to pay in my opinion, but I was in a financial position where I could afford it. i have been to the clinic twice for injections/ xrays & bloods since the covid lockdown and had no issues. It was actually very quiet.

Good luck.