Resorting to private Rheumatologist: After several... - NRAS

NRAS
26,062 members29,828 posts

Resorting to private Rheumatologist

After several years of getting nowhere with my GP and his referral to NHS Rheumie (who disagree with Dr David Gotlieb in Cape Town who diagnosed me with Sero-Negative RA 16 years ago) I have now made an appt with a private consultant at a Nuffield Hosp. £180 for first consult, £90 each following consult, plus cost of xrays, scans etc. I can't work so have no income so will have to borrow from my overdraft to pay it. I feel I have no other choice as NHS Rheumatologist will not see me again after saying he can find no markers, and that's all he can do. I have been in constant pain lately as DMARDS no longer working, and Meloxicam has caused erosion in my gullet. What scares me the most is the complete lack of monitoring of the drugs I continue to be prescribed (Salazopyrin and Meloxicam) after taking every day for16 years.

57 Replies
oldestnewest

Hi, that all sounds terrible. I'm not at all experienced with this type of thing but have you tried getting PALS involved at the NHS hospital? complain you want to see another rheumy for a second opinion?

7 likes
Reply

The 2nd opinion was the Rheumatologist's Senior. He just told me he agreed with his colleague that there were no markers and didn't even examine me. He seemed irritated when I asked him what he thought it could be. He said 'I don't know, but it's not RA, so I cant help you'.

Reply

😥😥😥

Reply

What is PALS?

Reply

Patient Advice & Liaison Service, every NHS hospital has one.

1 like
Reply

I think it's PAS in Scotland....Patient Advisory Service.

1 like
Reply

Ah could be, didn't realize you're in Scotland 🙄

Reply

There are many differences up here, one being that the 'pool' of NHS Rheumis seems to be small. Which might explain why my GP is being told they will not revisit their diagnosis of me. They made their decision 5 years ago and that's that.

Reply

You should not have to get into debt over this. There is a complaint procedure for every NHS health trust. Any good rheumatologist knows that Rheumatoid disease is often seronegative.

Your GP surgery will also have a complaint procedure. I have not heard of the drugs you are prescribed, unless they have different names here/elsewhere.

I hope you can find a way to deal with this that is most likely to have a positively helpful result. Good luck!

4 likes
Reply

I've looked them up, it's another name for Sulphasalazine and Meloxicam is a NSAID.

4 likes
Reply

Have you considered asking for a second opinion or a re referral first ? Or raise a complaint to the NHS ?

I'm seronegative and had a bit of a trial being believed initially as my bloods are all normal, except a low WCC. But eventually I've got there with the NHS. But I did have to fight hard to be taken seriously.

6 likes
Reply

How long did it take to get a diagnosis?

Reply

Around 2 years. I eventually got all my GP and rheumatology notes through a freedom of information request. I asked for a clinical psychology referral, for which I waited a year, she confirmed I was not depressed. I spent months going through my notes, made my case (I'm an ex nurse from a medical family) and tackled the rheumatologist. We just kept asking questions during the appointment, how do you now that? What evidence are you using ? Could there be a differential diagnosis, the notes say....can you explain ? Are you saying you don't believe me ? That's not what the clinical psychologist said, are you disregarding her diagnosis ?

I requested that all my notes and concerns be scanned into my records, particularly my concerns about poor treatment. (I take update letters from me, with my concerns to every appointment now.)

She eventually asked me what I wanted and I requested that we assume I had not been seen before, start afresh with MRIs, bloods etc. I got all that and the MRIs showed extensive synovitis with erosions. Bloods normal.

I was called at 5 PM in the evening asking me to attend rheumatology next day, when she started the process of getting me onto biologics. I received a letter from her saying my treatment had been 'sub optimal'.

I now take no nonsense, and submit everything I am concerned about by letter. I'm polite but challenge , challenge , challenge things I ain't happy about.

9 likes
Reply

If you feel forced to go private and the results are very different, I would be sending NHS the bill.

It's shocking to read your situation.

Hope things get better for you. X

6 likes
Reply

I will take the NHS and my GP to court if it's a different result.

1 like
Reply

I only got as far as threatening my GP and Rheumy with legal action.

They did an about turn and I recieved the correct diagnosis from GRI.

1 like
Reply

I can't like your post darling because I feel your not getting any help. I am sending you hugs. xxxx

4 likes
Reply

Thank you x

1 like
Reply

If your GP/NHS Rheumatologist disagree with your diagnosis, why are they prescribing DMARDS? Ask them, "why am I prescribed X, Y & Z if you think I don't have RA?" Don't get into debt over it, go back and see a different GP and start again.

9 likes
Reply

I can't. The senior GP rules his practice and other GPs in his practice have to concur with him.

Reply

Ah, the old-fashioned way

Reply

When you say you have no markers I'm taking this to mean that you’ve had blood tests and they show no antibodies and no inflammation? And your scan showed no sign of inflammation, and nothing apart from osteoarthritis in top finger joints? And the sulphasalazine & meloxicam are not controlling the pain so are not doing anything?

I know you were diagnosed with RA many years ago, but have you considered that perhaps that was the wrong diagnosis and maybe you have something else?

What makes you convinced you have RA rather than, for example, complex regional pain syndrome or chronic fatigues syndrome?

I’m not trying to be rude or mean, but sometimes taking a step back and looking at things again can help find a way forward. Because if your GP won’t refer you then ask them what they will do about your pain?

6 likes
Reply

You are not being rude. You are being sensible. I have considered this possibility. But have only been told I have Fibromyalgia by my GP. However, fibro does not cause your hands to stay fisted after carrying heavy shopping bags, and having to gradually open them. It doesn't give you morning stiffness or make it difficult for you to stand upright from a sitting position. It is not a symmetrical condition of hands, feet and shoulders. It does not cause tingling/burning in hands and feet. And it does not respond to Sulphasalazine and Meloxicam, where you stiffen up considerably when you stop taking them for a few days.

1 like
Reply

I would not trust a GP diagnosis of fibromyalgia, they have inadequate training to rule out so many rheumatological conditions and come to this complex decision. A medical student has 10 days placement in rheumatology......I'll say no more.

2 likes
Reply

I agree totally. But when it comes to Universal Credit 'Fit Notes' they rely on a GPs prognosis!

1 like
Reply

Completely agree with you.

My GP didn't and wouldn't although suspected Fibromyalgia.

It was my Rheumy who diagnosed me.

1 like
Reply

You might do better to change your GP rather than get into debt. You don’t have to give a reason to change ...you would get new view of your condition & it wouldn’t cost you anything.

6 likes
Reply

I am considering that, but if I leave current GP, and find I do have RA, I am no longer their patient which lets them off the hook. And how do I know if a new GP will be any better?

Reply

Different GPs choose different rheumatologist they refer their patients to. If you start anew with a different GP he will quite likely refer you to a different rheumatologist who will start tests all over again.

I’m afraid rheumatoid arthritis is not an exact science & if your GP says you don’t have it .... so refuses to treat you for it, unfortunately there is very little you can do about it, except find another doctor.......complainIng to the NHS will only delay you getting treatment....complaints can take months/years to get settled, & in a case like this, very few complaints favour the patient.

Also do bear in mind the average GP is not very knowledgeable about RA ,& is usually issuing prescription drugs prescribed by a rheumatologist.

You must also remember your diagnosis in Capetown was a long time ago and your condition has probably changed quite a lot in that time .

Also please do remember the fees you have quoted to see a private rheumatologist do only cover his consultation. If he decides to give you any sort of treatment ....injections et cetera ....the Nuffield will charge for that on top of his consultation fee & they very quickly add up. At my local Nuffield Hospital the charge for a Depomedrone injection is around £120, & an MRI starts from£530, & if you don’t have medical insurance you have to pay on the day.

If you are determined to take the route of seeing a rheumatologist privately do make sure he also has an NHS practice so that you might be able to transfer to his list on the NHS. If you telephone the secretary of his private practice she will be able to tell you if this is possible.

I know this is not what you want to hear.....but do consider very carefully taking on this debt....especially when changing doctors for free could bring about the same result....getting you the treatment you need.

8 likes
Reply

I am hoping that asking my GP to refer me to the Nuffield Rheumie, will make him sit up and pay attention. But I will ask if Nuffield Rheumie has an NHS practice. Thanks for your advice. Much appreciated.

Reply

I don’t want to dash your hopes, ZsaZsa, but realistically I fear if your GP doesn’t think you have RA & won’t refer you on the NHS, it is very unlikely he will refer you Privately.

He can hardly refer you saying “this patient thinks she has RA, but I don't” can he? Doctors are very reluctant to refer a patient to a Consultant only to get a reply that their diagnosis was wrong.

Do seriously consider finding a new GP. Ask around amongst your friends & see if any if them would recommend their GP........or

why not give NRAS a call & see if they can recommend the route you should take?

The sooner you see a different doctor, the sooner you will get the correct treatment.

5 likes
Reply

I don't need a referral and already have appointment lined up with Nuffield. Private Consultants let you self refer. Just want to let GP know that's my next step.

Reply

I personally would not bother about 'letting them off the hook'. The important thing is to get a diagnosis and appropriate treatment. If you really want to you can then write to your present GP giving an update of your diagnosis and treatment at a later date, stating you hope they use it as a learning tool.

3 likes
Reply

Hi - did you have a anti CCP blood test? As I went private and this was the first test my rheumatologist carried out to confirm a definitive diagnosis of RA, my count was 200 so absolutely no doubt I have aggressive RA.

This is what my rheumatologist told me, jump in anybody if this is incorrect.

Quote from source Google:

Anti-cyclic citrullinated peptide (anti-CCP) antibody testing is particularly useful in the diagnosis of rheumatoid arthritis, with high specificity, presence early in the disease process, and ability to identify patients who are likely to have severe disease and irreversible damage.

Hessie

6 likes
Reply

Hi Hessie, This was very similar situation for me.

This members GP and Rheumatologist don't seem to be communicating very well or at all.

I would be questioning the reason for my medication as BoneyC has said.

Perhaps Sulfasalazine is prescribed for other conditions but clarity between GP and Rheumy for the patient is paramount.

3 likes
Reply

Hey Shalf - hope all’s well. I understand very frustrating and stressful, been there.

I resorted to private for a lot of things as was not getting the answers. (Having RA has not been cheap for me sadly).

My GP and Rheumy never communicate but for letters on file. If I have an issue I am told I need to speak to my Rheumy and sent away.

With you absolutely on the questioning. Do you feel private is the way given this situation?

1 like
Reply

I'm bearing up Hessie. Seeing Rheumy in a few weeks.

Re private, I have considered it but it depends on circumstances.

The Rheumy I have now is approachable and caring so no issues there. Waiting times aren't great. In this members situation I feel it's forced due to lack of medical clarity and I find that very unfair. I would stand my ground in this case before parting with my money. X

2 likes
Reply

You’re right - where I live waiting times aren’t great. RA has certainly cost me dearly, partly due to delays and decisions that weren't properly thought through, hence private. X

Reply

Hessie, I will ask my GP about this. He got x-rays taken of my hands 2 weeks ago and we are still waiting for results!! I didnt know about this anti-CCP. I dont know if its already been done. The terminology is difficult.

Reply

Hi - my private rheumy said they don't (NHS) usually do the CCP they do a CRP. He did the CCP as he said it gives me a definitive answer of RA. Wishing you well with your x-ray results. 😌

1 like
Reply

You’ll get nowhere with a rheumatologist. You could have another autoimmune disease such as Sjorgens. This uses very different diagnostic criteria and markers.

1 like
Reply

All I know is, I came down with this syndrome immediately after an emergency Caesarian. I started walking like an old woman. I was 41. My feet get a prickly tingling hot sensation, which is my daily reminder to take my Sulphasalazine, which stops it. Otherwise it gets worse and worse and I can't sleep because it is so uncomfortable. Have run out on holiday and had to go to Spanish pharmacies to ask for more. As soon as I take it, or within an hour, the hot tingling goes away. I was diagnosed with post partum Sero negative RA. What is the connection? How do I join these dots? Never had any problems before Caesar.

Reply

You must consult a neurologist. Prickles and tingles in feet are neuropathic in origin.

Post partum hypothyroidism is quite common. Have you had thyroid blood panel done, including FT3 and FT4. Never accept a ‘normal’ TSH as evidence that your thyroid is functional.

Reply

Thanks. I will look into that. You sound so knowledgeable but I don't know anything about medical terms. My GP has said my thyroid is also functioning normally.

Reply

Please don’t place too much faith in a private doctor, just because you pay doesn’t mean they are any better and you will have to pay for all blood tests, medication etc. My ex employer sent me to see a Harley Street Rheumatologist even though I was quite happy with my NHS one. It didn’t cost me anything as they paid for it but I didn’t get anything from him that I didn’t already have from my NHS doctor. Did you know that you can ask to go to a different hospital? I moved house a few years ago and was so happy with my Rheumatologist that I stayed there and although it’s 30 miles from where I live I was allowed to continue seeing her, I believe they just bill my PCT. You may have more luck with a different hospital.

2 likes
Reply

I have asked to be sent to a different hospital/consultant and been given a flat refusal by my GP.

Reply

The first hospital I went too refused to fo any blood tests as I was on steroids months went by with my son and symptoms increasing. It was a locum at my gp surgery who was horrified at this treatment and referred me to a different hospital within a month I had a diagnosis of RA. I'm still struggling they are trying to find the correct drug for me but I'm on the right road. Insist on a new referral it's your right

2 likes
Reply

I promise you, I have asked several times for a new referral and been refused point blank.

Reply

I would not be asking any more, it sounds as if you need a change of GP, very easy to do a d you don't need to give a reason.

2 likes
Reply

In my experience unfortunately doctors do tend to stick together one consultant won’t necessarily tell a GP they were wrong and visa versa. I would change GP immediately I have only ever found one who really knew what RA was and helped me out short term. Please don’t get into debt because you can’t seem to find a GP who believes you. It’s your body and you know it better than anyone. Find another GP to start with you may have to start again at square one but diagnostic tests for RA and other autoimmune disorders have changed a lot in the 16 years since your first diagnosis and I agree monitoring of the drugs you are taking should be bread and butter and essential to any GP no matter how good or bad they are.

1 like
Reply

Thank you so much Leics, good advice. I am working on it. Just waiting to see what he says about my recent hand xrays.

Reply

Hi ZsaZsa22, This might seem an irrelevant question but have you ever been tested for celiac disease? This can mimic RA symptoms quite a lot. A friend who is seronegative was treated for RA for two years on methotrexate, sulphasalazine and nsaids with no relief for symptoms although joint swelling, stiffness, extreme tiredness, aches and pains were present all the time. Eventually she refused the meds as they made her feel so bad and affected her work. Her consultant then told her they could no longer help her and that she obviously didn’t have RA. She went back to her doctor and asked for a celiac test after someone mentioned it to her and it was positive. She is now gluten free and mostly back to normal having found she has palindromic arthritis which only flares occasionally. Cutting out the wheat etc was what broke the cycle for her and possibly triggered it in the first place.

When I was diagnosed with seronegative RA many years ago, celiac was one of my first tests because it runs in my family, (I am clear) and I do think it should be automatically included where RA is suspected as it is just a simple blood test.

Hope you get the help you deserve soon! Good luck.

1 like
Reply

Hi Kariss. This came on suddenly after an emergency caesarian for the birth of my son. It was diagnosed as post partum RA in Cape Town. Here, in the UK, the NHS can't find the markers for it. But I would think if I had coeliac disease, I would have suffered from it before, as I was 41 when I had my son, and I have never had any issues with wheat beforehand. I honestly think it was the body shock of the caesarian that triggered this condition. But thanks for the suggestion.

Reply

My GP called to say I have markers for Lupus. Still waiting for results of xrays, 3 weeks later. I have also asked GP to refer me to a Rheumatologist who also does NHS work. So I have made some progress. I can pay for the initial private consultation and then ask to be transferred to his NHS practice.

1 like
Reply

Well it's not good news 😕 but at least you now have something to work with! All the best with your rheumy appointment and hope you get sorted with the right medication soon 👍

1 like
Reply

Thanks JFlay

Reply

You may also like...