Is it RA? : Hi everyone, just looking some advice... - NRAS

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Is it RA?

Livesoncoffee profile image
24 Replies

Hi everyone,

just looking some advice. Over the past two year I have been having recurrent sore throats, seem to be nearly every other week but haven't needed medication treatment. Since having my two children I have always had 'stiff hips' and any time I took up running had to stop after a few runs due to knee pain. About 4 weeks ago developed very sore joints in my hands that become increasing pain full with movements such as typing, holding phone when talking on it, driving any distance, Cutting up meat, turning small door lock turns, opening fridge door etc. I have also dropped a number of items that normally I wouldn't eg gravy boat. The pain has moved to my shoulders and elbows (not continuous) and have also had episodes of pain in my knees, hips and feet. Hands are swollen around joints but not continuously as are toes. I have been on high dose of naproxen for 3 weeks and this has made it manageable but still notably there and have required co-codamol on several occasions. Other symptoms include fatigue, dry eyes, hair loss at temples. GP suspects RA has ordered several sets of bloods and currently CRP is 66 and anti CCP in 'normal'. GP advised this week that I would probably need a referral to rheumatology but the waiting list is over 1 year at present. Has anyone any suggestions as what i need to do next? Know I cant keep going with this level of pain at 32 yrs old as it is having an effect on work/family life as well as bringing to have an effect on my mental health.

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24 Replies
Amnesiac3637 profile image
Amnesiac3637

What a dilemma. Poor you. You can ask your GP to refer you to a consultant outside your area if your local waiting list is full and you can choose where you want to be seen if you’re able to travel. A year is far too long to wait for a diagnosis and treatment and do I hope you get some treatment and relief soon. Good luck and push for what you need - if you don’t ask you don’t get!

medway-lady profile image
medway-lady

I think you need to speak to GP and ask for an urgent referral but of course theses days it is really difficult so whilst this may be unpopular if I were you and you can afford it, I'd go private. Look up an RA consultant at your nearest private hospital and perhaps invest in yourself. I don't recognise all the symptoms you list but who knows RA is a funny old disease and affects everyone differently. If you do have it and I'm not medically qualified so not an expert by any means but you might be able to get a medication on a private prescription and for a few months at least get some interim help. Methatraxate costs pence and is commonly first prescribed and a private RA consultant might be able to see you on his NHS list. It is simply just worth asking, if that is not something you wish to do then perhaps ask for a cancellation ? I wish you luck and hope your feeling better soon. I went private many years ago took the cheque book to the pharmacy to be told 3 months MTX was £1.90 it may be more now but could be a good idea to investigate as GP's are not allowed to prescribe most RA medications without instruction from a consultant. MTX doesn't work for everyone but its worth a try and it can't do you any harm to simply investigate all options.

AgedCrone profile image
AgedCrone in reply to medway-lady

Agree 100% ML….definitely time to raid the piggy bank!

Livesoncoffee profile image
Livesoncoffee

thank you both. Looks like I’m have some ulnar drift on the middles fingers on both hands. Plan to demand a face to face appointment tomorrow with gp and will be looking at going private if I don’t get anywhere.

in reply to Livesoncoffee

A sore throat was the herald of my illness Adult Onset Stills Disease aged 17. I’m now 60 and the constant sore throat is still present. Pain and stiffness started in the hands and knees later spreading to feet, shoulders, hips, neck and elbows. A rash was also present at the beginning but not these days. I recognise your description of difficulty, some days I can’t open a letter. Stills is rare but look up the symptoms. Unfortunately there are many types of RA conditions but your reference to your sore throat prompted my response. Hope you can advance your situation soon.

Brychni profile image
Brychni in reply to Livesoncoffee

I had to go private twice and it was manageable. Around £250 both times and an additional £170 for scans. It was a struggle but worth it. Your symptoms sound very similar to mine. I have Undifferentiated Inflammatory Arthritis and my notes now say lupus and connective tissue disorder. I also take aspirin for blood clotting antibodies associated with lupus (not sure what the symptoms are).

There seem to be a lot if overlapping in symptoms and I've been told that rheumatology is vague and they often don't really know. I take hydroxychloroquine and it seems to be working at the moment. Etoricoxib is a much better painkiller, needs to be prescribed by rheumatology, but perhaps gp could look into it for you. Remember you can put your foot down. Don't just be fobbed off.

BTW, you say you exercise, my biggest piece kf advice is do mot stop. Pain does not equal damage and if you become inactive everything will get worse. Every consultant I've seen has told me this and my weight (normal) exercise undoubtedly help to manage the condition.

Sometimes I can't face it but even if it's only a stiff ealk eith the dog i make myself. Good luck. It's sh** but with yhe right medication things can get better. X

Biofreak profile image
Biofreak

I agree with ML as well. You can't wait a year for a diagnosis because too much damage to your joints could occur over that time. My symptoms started in much the same way apart from the sore throats. I had a good GP at the time and he referred me quickly to rheumatology and I waited about 2 months but that was many years ago. As we all know waiting times are dire in the NHS at the moment. You may only have to pay for the initial consultation and tests but well worth it if you can manage it.

A year to wait 😱. Jesus. Go back to your GP and say you need an emergency appointment. There could be untold damage in a year

I was diagnosed 12 years ago. I went to the ‘Early Arthritis Clinic’ in a matter of weeks, and went regularly for two years before going down to 6 monthly appointments.

No wonder the nurses are voting whether to strike. The NHS is being decimated before our very eyes.

calflo profile image
calflo

My symptoms started off very much like yours. Swollen glands (throat) regularly, pain in feet which caused difficulty walking, painful hands and wrists, meant I couldn’t even fasten buttons, unable to cut up meat and lost count of the number of dishes I dropped.

For 4 months I resisted medication and took high doses of an anti inflammatory’s and lots of codeine phosphate. However this affected my stomach so I wouldn’t advocate this.

I would agree with other opinions, don’t leave it long before treatment as it can destroy joints.

Good luck and hope you get sorted soon.

Jackie1947 profile image
Jackie1947

One year waiting list if thats true its shocking. Keep badgering your Dr to get an earlier referral. Naproxen is all very well but it must be used with care and preferably a stomach protector medicine to take with it. A course of steroid tablets would be more helpful.

CallMeSunny profile image
CallMeSunny in reply to Jackie1947

Glos is advising a wait of 35 weeks at the moment!

Runrig01 profile image
Runrig01

I agree completely with Medway lady, I was about to post an almost identical response. I’m not sure if you have private insurance, or raiding savings. The reason I mention it, is that a lot of rheumatology drugs like methotrexate require frequent blood monitoring, especially in the early days when it’s weekly or fortnightly. Bloods can be expensive and add up quickly. Normally they would check FBC, LFTs, CRP, ESR and U&Es. It may be worth asking GP if you were started on a med whether they’d be happy to do the bloods on the NHS & then forward results to the private consultant.

Your GP should have sent referral through as urgent if you have more than 3 joints affected. I’d also see about getting hands and feet crated if not done already, and obtain copies for the private consultant, which will save them repp pop eating them and keep your costs down.

I’ve attached the NICE guidelines on the steps that should be taken when RA is suspected. Good luck

nice.org.uk/guidance/ng100/...

Rosie_rabbit profile image
Rosie_rabbit

I agree with everyone about investing and going private if you can. I’ve had RA for about 11 years now and both my daughters have started to develop symptoms. My 17yo had an urgent referral to the NHS rheumatologist in June this year and was seen within 4-6 weeks and diagnosed with early RA. My 18yo’s symptoms were not so clear and wasn’t given an urgent referral so we saw someone privately. Just be prepared that the private consultant may wish to do bloods, X-rays or scans so it may cost a little more than the consultation fee. However the hope here is that your GP will do an urgent referral and hoping your local team can see you as quickly as my daughter was seen. I year is way too long!!

Sheila_G profile image
Sheila_G

I Really feel for you. It is terrible at the moment. Waiting times to see anyone are ridiculous. I would never have suggested this at one time but when you need help, you need help. Could you afford to get a private rheumatology appointment? If you can you will then be able to continue on the NHS. I suppose private appointments aren't as quick as they used to be either but it will certainly be much quicker than waiting for an NHS appointment. Lots of luck

grumpygirl profile image
grumpygirl

I also had to initially pay for a private consultation back in 2014 as our local hospital rheumatology dept was in meltdown. It got me a diagnosis and holding medication otherwise I think I would have ended up in a wheelchair. If you have the means I would urge you to do this to cut down on potential joint damage. If possible research the Rhuematology Dept you want to be treated in(and this doesn’t have to be your nearest) and get a private consultation with one of the consultants who work there. If you like them ensure that is where your gp refers you. If you have RA this will be a long relationship so it’s important to make sure you will be happy with them. Good luck!

oldtimer2 profile image
oldtimer2

NICE recommendations: All people suspected of having RA should be referred for specialist assessment to confirm the diagnosis (within 3 weeks of referral). Referral should be within 3 working days of presentation if any of the following are present:

Small joints of the hands or feet are affected.

More than one joint is affected.

There has been a delay of 3 months or longer between the onset of symptoms and the person seeking medical advice.

link: cks.nice.org.uk/topics/rheu....

Fruitandnutcase profile image
Fruitandnutcase

Thats exactly how I came to be referred. I was very lucky that the GP (he wasn’t even my regular GP) I saw was on the ball. The number of people I know whose hands are completely distorted who have told me their doctors tell them ‘just take some painkillers’ is just amazing. How can some doctors be so enlightened and so caring while others just d9nt seem to want to bother?

Anyway, my doctor did a few ‘tests’ of his own, I pointed out the things I was finding difficult - by that time I had had to buy plug pulls to help remove plugs from their electric sockets - and he said he would put me on a fast track referral, to get back to him if I hadn’t been contacted by the rheumatology dept within three weeks. As it was they were run off their feet but contacted me to explain that and I was seen fairly quickly although not in the three weeks.

I remember saying to the GP ‘but my hands aren’t distorted’ and he said that with prompt treatment your hands didn’t need to get like that.

Good luck with it all, you absolutely definitely need help.

Livesoncoffee profile image
Livesoncoffee

Thank you everyone for your advice. Spoke to GP today at length and then asked me to come in for a face to face review. Did bloods, agreed that photos of hands showed substational swelling on various occasions and ular drift on two fingers. She took more bloods herself and advised rheum opinion needed and gave letter for private referral. Been looking at local options, anyone from Northern Ireland and can recommend a good rheumatologist?

smilelines profile image
smilelines in reply to Livesoncoffee

glad you are getting somewhere with this and saw the gp again!!! Way to go and best wishes for a prompt diagnosis.

JenniferW profile image
JenniferW in reply to Livesoncoffee

If you put up a separate post with the request for recommendations in NI as the title it will get more visibility. You need to be aware we aren't allowed to recommend doctors in a post, so put that people should direct message you, the mods will see it and turn off replies and reiterate the direct messaging, which is permitted for recommendations.

also I meant to say I agree entirely with Brychni about exercise. I’ve always managed something from full on gym to gentle swimming and it really does help.

Chockyuk profile image
Chockyuk

Hello 👋

As others on here have said, a year is far too long to wait, if it is RA, who knows what untold damage will be done to your joints by then.

I was diagnosed 4 years ago, at first I was told I’d have a 3-4 month wait to see a Rheumatologist, but I had already been off work 3 weeks and was in such a state I could hardly walk. I had all the blood tests, my RF was positive and although my CRP wasn’t too bad, my ESR was 79. My GP eventually phoned the hospital and spoke to a Rheumatologist who evaluated my tests and said he was 99% sure it was RA, and took my GP’s word on the fact my fingers were all red and swollen like sausages, and he told her to give me Prednisone to tide me over until I had the Rheumatology appointment. The Pred worked like magic and within a week I was back at work.

But when I actually had my appointment at the hospital many months later, my new Rheumatologist wasn’t happy I’d been given steroids as it obviously masked the symptoms and she couldn’t see for herself. But she put me on Mthx anyway. Many years later I’ve had loads of flares and she’s now seen for herself, but I’m forever grateful my GP took matters into her own hands, as otherwise I’d have been in agony for months.

I agree if you can possibly afford to go private just to get a diagnosis, that would be the way forward.

I hope you get it sorted 💕

Livesoncoffee profile image
Livesoncoffee

thanks everyone for all your advice. Going to see a private rheu consultant in 2 weeks. Hnad x-rays have come back clear and swelling seems to only be in the PIP joints and knuckles - rest of fingers seem okay most of the time. Pain seems to be increasing tho and i'm more and more grumpy 🙈 Hate the not knowing and waiting the most!

Al1954 profile image
Al1954

I have RA and its going to be 9 years i have recurrent sore throte i have done all kind of tests and nothing i guess its part of this terrible illness.Hope you get over it

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