Advice requested: Hi 👋 Sorry for long post... I’ve... - NRAS

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Advice requested

Lisa_middle_earth profile image

Hi 👋

Sorry for long post...

I’ve had bilateral swelling and stiffness in feet, ankles, knees, shoulders, wrists and hands for a while now but seems to have worsened over past 12 months or so. GP has recently done bloods - Rheumatoid factor was 10 (range <15) so I’m guessing this rules out RA? My ESR (inflammation marker) is 33 (range 0-12) so I’m no further forward in finding out why I’m like an exhumed corpse (pain on movement, lethargy and fatigue) each morning, which can last a few hours 😥I’ve been started on gabapentin 3 weeks ago as naproxen and cocodamol (30/500) haven’t touched the pain at all (have been taking them for approx 10 months).

GP initially thought RA, prior to bloods, with alternate working diagnosis of polymyalgia rheumatica, but thought PR less likely of the two. He wants to see how/if I respond to the gabapentin before “committing” to a diagnosis.

Any advice would be greatly appreciated xx

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Lisa_middle_earth
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16 Replies
Pat9442 profile image
Pat9442

If it is PMR it will only respond to prednisolone. Gabapentin will not have any effect nor will any other NSAIDS

Pat9442 profile image
Pat9442

Forgot to say look on PMR forum. Loads of info there

Lisa_middle_earth profile image
Lisa_middle_earth in reply to Pat9442

Thanks, much appreciated

helixhelix profile image
helixhelix

A GP is not qualified to diagnose (or not diagnose) RA. And a negative RF test means nothing as it is not a very specific test. Loads of people are what is called sero-negative which means they have RA despite not having the RF antibody in their blood.

You must ask to be referred to a rheumatologist. They can do more specific tests called anti-CCP which re more specific, and are also better able to diagnose based on physical symptoms.

Insist that you have a musculo-skeletal condition of some sort and need to be referred!

Lisa_middle_earth profile image
Lisa_middle_earth in reply to helixhelix

Thank you very much! I wasn’t aware of the GP and diagnosing. I injured my right knee last October and xrays shown arthritic changes then. I’m really concerned about the increasing pain with decreasing mobility - I’m 45 and feel 145!

in reply to helixhelix

Please listen to helix helix she right. I too had these symptoms for years and they were dismissed I am s -negative and even now my bloods don’t show activity, but I have deformity on both hands and feet due to late diagnosis. Dig your heels in get referred to a Rheumatologist then you will know for sure one way or another

Lolabridge profile image
Lolabridge in reply to helixhelix

Such good advice from Helixhelix. Ask for an emergency referral and, if your inflammation and pain continues, go back to your GP and ask for steroids in the interim. Good luck.

GP wants to see how the gabapentin goes 😳 I injured my right knee last October and on plain film X-ray there were obvious arthritic changes. My main concern is my decreasing mobility due to swelling and pain

charisma profile image
charisma

I am in agreement with others; your symptoms demand urgent referral to a specialist qualified to diagnose what is going on.

What kind of arthritic changes showed up? Were you told if they were from osteoarthritis or not? Any person familiar with changes due to OA and RA can easily see the distinction.

Please don’t delay seeking referral asap. Good luck!

Lisa_middle_earth profile image
Lisa_middle_earth in reply to charisma

Thank you very much. It was an orthopaedic doctor and just said arthritic changes - I didn’t think at the time to ask if OA or RA 😳 will push GP for referral, thanks

I was like you for 2 years and after I crawled into Docs about 3 months ago and said PLESE do bloods and check again for RA I came up with sero positive and ccp 75 and of course now waiting for rheumy consult to see me in Sept. It took 2 years of me living in hell knowing I had RA as so uniform over thebody. It doesnot always show and you just have to keep getting bloods done.

On OA treatment pre RA showing, I had pregablin, tramadol or nefopam,naproxen and I then took Vit D as bloods showed severe deficiencey and turmeric.

It is hard to wait but just battle away as you will know deep down something is not right.

Lisa_middle_earth profile image
Lisa_middle_earth in reply to

Thanks, did you find the meds for OA help with your pain at all? I had no joy with naproxen and cocodamol, and so far no joy with gabapentin (other than evil acid reflux!) but it’s still early days on the gabapentin and I’m titrating the dose gradually on GP advice - not on top dose yet. Will definitely keep battling on, hope you get on ok with your referral 😊

oldtimer profile image
oldtimer

It really is important to have a proper diagnosis. Gabapentin will not help with this. With this history and a slightly raised ESR, a negative Rheumatoid Factor test is irrelevant. Please ask to be referred to a rheumatologist for further testing.

Have a look at the NRAS site about diagnosis.

Lisa_middle_earth profile image
Lisa_middle_earth in reply to oldtimer

Thank you, much appreciated 😊

Pasjc profile image
Pasjc

I was the exact same as you gp diagnosed PMR and put me on steroids that was 3 years ago still struggling to get off them. Finally diagnosed with RA and OA I had to push for referral dont give up

Lisa_middle_earth profile image
Lisa_middle_earth in reply to Pasjc

Thanks, knowing that I’m not barking up the totally wrong tree has helped. One of the GPs just said it’s a negative result so I most definitely can’t have RA, but my symptoms fit more with RA than PMR, particularly the uniformity of the pain and swelling.

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