RA Consultant

[LD1954]

Hi I had my first appointmet with a RA Consultant today. After describing my symptoms and a physical examination, I have had some more blood tests and will return for another appointment in 3-4 months time. Meanwhile my hands, fingers, shoulders, knees and ankles are giving me a lot of pain. Just wondering what more the consultant is looking for. My RF previously was 76 inflammation at nil. I asked about taking turmeric and he said if it helps then keep taking it. Any suggestions would be appreciated....

[oldtimer]

That sounds difficult for you to manage for the next few months!

Have you been offered any treatment to control the pain? If not then I would be agitating (phoning persistently!) for a more rapid answer to the new blood tests and what treatment will be offered.

[LD1954 in reply to oldtimer]

Thanks for the suggestion. I already have prescription strength cocodamol/sulphadine from my GP which helps.

[Hidden in reply to LD1954]

Same thing happened to me. Finally saw a rheumatologist, was then told they could do nothing until results came back!

I'd been signed up for x-rays. I was told that I couldn't have steroids until after X-ray. Reasonable. However, I was in agony, and so stiff I couldn't roll over in bed. I was in so much pain I was in tears. I was eventually given a depot of steroid. Lucky, since my appointment for X-rays took an age to come through.

If you find you can't manage the pain, do phone rheumatology and tell them.

[Eiram50]

After suffering significant pain for at least a year, I eventually saw rheumatologist. I have to say, things then moved at remarkable speed. I had bloods and various x rays at initial appointment the MRI three weeks after. I then saw rhuemetologist a month later and was put straight onto humira, arcoxia as well as various painkillers.

It seems quite unacceptable to have such a long period of waiting whilst left in such pain. I hope things get sorted for

You soon .

Marie

[JacquiThomas999]

I had X-rays taken the same day. Walked from clinic to x-ray and back again. Had drugs same day too. Strange how different Rheummy consultant do their jobs.

Jacqui

[helixhelix]

If your inflammation markers aren't raised then it might be that they are not convinced it's an inflammatory disease like RA as an RF of 76 is not super-high and it's not that specific a test anyway. Are your painful joints obviously hot & swollen, or just painful? Do you know what the new blood tests were? And did it include anti-CCP which is more specific? Sadly sometimes with an overstretched NHS they don't explain their thinking very well, so it also might be that the doc thinks you're at a very early stage and wants to see what develops to be sure.

[LD1954 in reply to helixhelix]

HI thanks for your reply. My joints are painful and hot, sometimes swollen, especially my hands and knees. The new blood tests were just a repeat of what I have already had -FBC, ESR and CCP so it may be he is looking for any possible change against previous tests.

[helixhelix in reply to LD1954]

Yes, quite possibly. The consultant should write to your GP with his/her conclusions and you are entitled to get a copy of this letter. So ask your GP for one - tho' can take a couple of weeks after the appointment for it to get through to GP.

[Joy_1]

Go back to your GP and kick up a fuss.

My markers were all normal despite swelling and pain.

[DelicateInput]

Usually, they are looking for disability rather than pain, and also any swelling (albeit they don't seem to be able to see swelling unless it is gross).

I find it strange that you did not have any imaging done. A very, very basic investigation is an x-ray at least. It won't show RA initially but it will show other forms of arthritis and any RA that is advanced.

According to various websites, most people have negative blood tests initially and these often become positive after a year.

You should really have either ultrasound or MRI done on one or more joints. Ultrasound is cheap and easy to tolerate.

I would be asking the GP why basic investigations have not been done (if you can get an appt). I would also feel inclined to ask to be referred elsewhere. I don't think it can be classed as a second opinion as you have not been discharged. Maybe the hospital you attended is too busy.

You could ask for a private referral to a consultant in your area, in the hope that you can get ultrasound done on the NHS. You could also visit a physiotherapist yourself to see if they can suggest anything - they are usually very knowledgeable. They can refer you for a private MRI or you can get an ultrasound done privately without a referral at quite a low cost. My suggestion would be getting the hands done and one shoulder. The ultrasound will definitely show enough to make a diagnosis.

Good luck.

[LD1954 in reply to DelicateInput]

Thanks for your reply. I had x-rays of my hands done previously, which showed osteoarthritis. About 7 years ago I had keyhole surgery on my shoulder for removal of bone spurs and synovectomy, but I forgot to mention this to the consultant. I have had steroid injections in the past in the SI joint and for tronchanteric bursitis, and have had an MRI scan on my pelvis which shows osteoarthritis. When I mentioned this to the consultant he wasn't interested. Today my hands and knuckles are swollen, but yesterday when I saw the consultant they were fine. I will see how things go over the next month and if necessary I will either chase the hospital or see my GP who was far more helpful.

[DelicateInput in reply to LD1954]

Try to get an ultrasound done of the hands. Some GPs can arrange it and others can't but it is not expensive. It will show up all sorts of signs of RA - joint damage invisible to the eye, effusions, tendon swelling, identify nodules..

It is a very comfortable procedure with nothing to tolerate and you can see the images coming up on a screen. I would not recommend MRI on the hands. I had this done and my shoulder had been affected with RA as well. It meant proping my hand up on to a platform like a mini ironing board and putting all my weight on my shoulder, lying face down. It took an hour and it was murder. It only confirmed the ultrasound results, with a minor improvement following electro acupuncture and Chinese herbal medicine.

It sounds to me that he thinks it is osteoarthritis but he is supposed to treat all forms of arthritis. I know three people with very severe osteoarthritis and they are in a far worse state than anyone I know with inflammatory arthritis. You could have a combination of both, as a lot of people do. I think I would ask to be referred elsewhere. You can get acupuncture on the NHS but the ladies I know who had it for osteoarthritis did not rate it - the NHS only does plain acupuncture whereas the electro vibrates and I needed a high current for it to work. It certainly eases disability.

[LD1954 in reply to DelicateInput]

Hi thanks for your reply. I have been sent a follow up appointment for a couple of months time, and I also emailed the Consultant's PA with some information I forgot to mention at my appointment on Monday. My GP did suggest that I possibly have both osteoarthritis and rheumatoid arthritis and previously gave me a prescription for painkillers which I take sparingly and only when absolutely necessary, which is becoming quite frequent. It is the dull, constant aching that is hard to put up with, and tonight it is my knees and wrists that hurt like crazy. I will battle on.

[DelicateInput in reply to LD1954]

I never get that dull, aching pain except in my lower spine which definitely is osteoarthritis, though it is intermittent.

I do get severe sudden pain which has made me scream in my hands and arms but it only last a minute or so and then peters out over the next few minutes. Also to a lesser extent elsewhere but always non-continuous. Can't quite understand it really but it seems people have various other conditions so it is hard to distinguish. It was the disability that I could not cope with but that was largely relieved with electro acupuncture and Chinese herbal medicine.

Good luck with the letter to the consultant's PA. Mine asked me if it was his homework when I handed him a few notes - not because I had forgotten but on the previous occasion he said he did not have time to listen as he was too busy.

The best thing to do yourself for inflammatory arthritis is to keep moving and exercising and doing the housework. At the end of a couple of hours, you will feel a lot looser and less disabled. My three friends with very severe osteo all go swimming every day - one had a pool in her block of flats and used to get up at 5 am for a swim before she travelled in the City to do a full time job. I can appreciate how hard it is with bones rubbing together but they say it is preventative as well. They also all take an enormous number of supplements for the bones, which do actually build up the cartilage and help osteoarthritis. I sent for some of the but I'm afraid it is hard to remember to take them and I don't feel I need them except for Devil's Claw (featured on Arthritis UK website). It does actually relieve pain by about 60 to 70 per cent.

Best wishes,

[LD1954 in reply to DelicateInput]

Thanks😂. I will add devil's claw to my list. I am finding turmeric beneficial and notice the difference if I run out or forget to take them for a couple of days. Best wishes.

[nomoreheels]

Hiya LD1954. Whilst you've had a very different experience to me when I was diagnosed I wouldn't worry too much. A diagnosis isn't based on disability, rather a number of things.... examination, blood tests, imaging. What may be muddying the waters a bit is your OA, if he's not convinced your joint swelling & accompanying pain isn't OA he won't give a diagnosis of inflammatory arthritis without the test results I wouldn't think. It's quite normal to have a follow-up appointment in approx 3 months but generally you'd have started meds which is another reason I think he's being thorough. At your next appointment he'll have everything back & probably examine you again. Your RF isn't overly high & one of the things he'll have tested you for is your anti-CCP, it's a more accurate test for diagnosis than RF, that & CRP & ESR your inflammation levels, among others.

What I'd be tempted to do as you're still in pain is make an appointment with your GP, see if he/she can prescribe more appropriate pain relief &/or NSAID for the interim. The report from your Rheumy to your GP can take up to 3 weeks, that will give an idea what he's thinking. If you request it your GP will give you a copy once he/she's read it & if you don't understand the report ask if it can be explained to you.

It probably sounds an odd thing to ask but it may explain some things, are you sure the person you saw was a Rheumy? Lately I've noticed it's not always a Rheumy who's taking diagnostic appointments. I can imagine it must be disappointing when you come home with no definite diagnosis, it's not always cut & dried that's the shame of it.

[LD1954 in reply to nomoreheels]

HI yes the Dr I saw is a Consultant Rheumatologist. I do have some pain relief medication from my GP thank goodness, and at least if I take it before I go to bed then it does help me get some sleep.

[Barb66]

I saw a rheumatologist first and my RF was only 36 but he put me on prednisalone for 8 weeks and took some more blood tests including anti CCP. When I saw the nurse 3 months later she said that if the prednisalone helped then that's a pretty good indication I had an inflammatory disease. ( it was fantastic for 4 of the 8 weeks!) and my anti CCP came back as 298. I'd go to the GP and get a course of steroids prescribed to tide you over till you see the rheumatologist again. Good luck xxx

[LD1954 in reply to Barb66]

Thank you. I am getting by at the moment and have prescription cocodamol to take as and when required. Turmeric helps too. I will see my doctor if things get really bad. X

[LD1954]

Hi I have finally got a copy of the letter the RA consultant sent to my GP in which he says I do not have RA based on more specific blood tests, even though my RF level was 76. Still no explanation as to why my joints ache, fingers are swollen and I am exhausted most of the time. He did confirm that I have OA which I already know about as I have had it for years. I have to go back in April for a follow up appointment, but not sure where to go from here. Any suggestions would be welcome,.