Seeing a Rheumatologist Privately

You have my sympathy, I was originally classed as seronegative thirty years ago, but ten years ago my RA became so bad, I had to give up teaching. Tests at that time showed I was now seropositive.
Even when I was seronegative, I had yearly, then six monthly appointments with a wonderful rheumatologist.

I cannot understand why you have not been referred to a rhuematologist and are not on disease modifying medication.
I have been through them all and am now on weekly biologic injections, Sulfasalazine, Fentanyl and paracetamol for pain relief. By seeing an NHS rheumatologist, you would also have access to OT and Physio.

Your GP is failing you. Can you see a different GP and ask for an NHS referral?

I hope you get help soon, it is such a cruel disease.

Thank you so much Marydoll I forgot to say (head's all over the place tonight) that I was treated with several DMARDS for the first 5 years after diagnosis and then was said to be in remission and given a secondary diagnosis of Fibromyalgia. I was discharged into the care of my GP but, despite bloods being "normal" I'm worried that there is active disease again and damage is being caused.
I hope you are managing as best you can.

Perhaps a private rheumatologist would be the way to go, where you could articulate your fears and concerns, in the hope that you would get back into the system.

It was hand pain, which finished me off! I fought long and hard with everyone, but eventually I had to admit, that I was no longer fit to work. I could hardly use my hands and found the splints a blooming nuisance.
At the moment my pain levels are through the roof, despite all the medication. Hopefully it will settle down, once the weather gets warmer.

I wish you all the best.

Thanks again Marydoll. I'm sorry to hear that your pain has such a hold on you. It was hand pain that made me have to retire from much loved work too.
I will research Rheumatologists in my area and hopefully have my questions answered and concerns addressed. It will be worth the cost I'm sure. Wishing you better days ahead.

Feel free to message me at any time.

I have been so fortunate in having the most wonderful rheumatologist, who came out of retirement during the pandemic, because his replacement was working in Covid ICU.
He used to phone me to check up on me and on hearing how unwell I was, arranged for me to start biologics. It has not been an easy path, I am on my third biologic in three years (I have a tendency to allergic reactions), but I am always hopeful of a respite.

We can't give in or we would be done for, but I do admit to feeling absolute despair at one point. Incessant pain drags you down, no matter how resilient you are (and I am pretty resilient.)

I too wish you better days ahead.

Ask your GP for a private referral, or failing that contact a local BUPA, Nuffield or other private hospital.

Look at the hospital websites. They will have details of the specialists who work there and what their specialities are and you should be able to identify which will be the best for you to see.

MOnica, the OP's GP hasn't been very supportive up until now. I wouldn't be wasting my time asking him for a private referral. He does not appear to have taken Starof1972's condition very seriously up until now.

RA is a systemic condition, which targets the whole body, it needs careful monitoring. Even with careful monitoring, my heart condition, related to my RA wasn't picked up, until I had a heart attack.

"CazyH*, you are still leaving spaces.

Ha, ha wrong thread. RA also causes brain fog! 🤣

Thank you both for taking the time to advise, and for your offer of supportive messaging Marydoll I hope your pain has eased, though it's a damp and cold day where I am.
I live not too far from a Nuffield hospital M0nica and it will be great if there is a suitable rheumatologist there. I know they often work in the local hospital as well as in private practice and I would hope that I end up back in the system as funds are limited as far as savings go. I can easily pay for the initial consultation but I imagine any x-rays and scans required would be an additional cost. I shall make enquiries tomorrow.
Thanks again to both of you.

Hello Starof72
I was first given blood tests for possible RA 38 years ago. I had a four month old baby and had found I couldn’t grip my tooth brush, open bottles or hold my steering wheel easily. I was told the doc didn’t know what it was but I should be thankful it wasn’t RA as the bloods were negative.
I was eventually diagnosed 8 years later, tests still negative but the rheumatologist I’d been referred to did various scans and took a full medical history. He concluded I was ‘typical’, I’d been managing it well since my mid 20’a when first symptoms appeared. He also diagnosed several other auto immune conditions.
Like Marydoll I eventually retired on health grounds at 62 after a dreadful incapacitating flare despite being on the highest dose of methotrexate. I now take biologics and I’m doing well

If you use Google or your usual search engine you will find consultant rheumatologists in your area. They will list their specialisms. Search reviews of the consultants you feel might meet your needs. Or ask your GP to suggest
Best of luck - it’s tough getting diagnosed

Thank you Iam64, I'm sorry that it took so long for you to be diagnosed. It must have been very difficult trying to manage with a young baby to care for.
I do actually have a diagnosis of seronegative RA, finally made when I was 55, but was discharged in remission which was apparently brought about by the use of injectable Methotrexate after having tried several other DMARDS. It's just the worry of not being, in my opinion, monitored from time to time that concerns me.
My search will begin tomorrow. I am going to join the NRAS forum too in the hope that there is sometime from my area who can make a personal recommendation.
Thank you.

Please do not go down the private route with this ghastly disease. I agree with others; find a Rheumatologist yourself locally, and ask to be referred by your GP.

I think you would be wasting money if you were seen privately, drugs are expensive and should be monitored.

I agree with every word Marydoll said.

Do we share GPs? Mine works from home, so it's easy to do a full examination or even just look inside an ear!

I seemed to have lost my post. Apologies if I have duplicated my post.

Star, if you are still on Methotrexate, then your GP should be monitoring you on a regular basis, he has a duty of care.

Primary care monitoring requirements for people on methotrexate. Every 2 weeks until dose is stable for 6 weeks, then monthly for 3 months*. Thereafter, at least every 12 weeks. Monitor more frequently in people at higher risk of toxicity.

A colleague on Methotrexate was always beeing chased up to go for Methotrexate monitoring. She was very lax at attending appointments. That is how it should work.

When I changed to my third biologic, I seemed to have slipped under the radar for monitoring. Once I realised my bloods were overdue, I phoned the hospital RA helpline and left a message.
An hour later, I received a call apologising and saying an appointment had been made at the local phlebotomy hub, to save travelling to the hospital I attend.

I do not accept this blanket ban on not going private. You do not have to stay in the private system once you have a diagnosis and since almost all private consultants work in the NHS as well.

After DD nearly died relying on GP care, we paid for her to have one appointment with a private specialist, she checked who was the local senior NHS specialist and then saw him privately. When he was aware of the failing treatment she was getting from the GP and the seriousness of her illness, she was immediately placed on the NHS waiting list and accelerated up it because of the seriousness of her condition.

I have since used private consultants several times, where there reports are sent to my GP who has used them as a basis of referring me for care on the NHS.

Charley girl, last year my excellent local Rhuematology department had a wait list of 18 months.

As Marydoll says, if a patient is on methotrexate, they will be monitored regularly, in line with guide lines.

Seeing a consultant privately can help. They will take a medical history. A letter will go to the GP and patient with a summary and recommendations. The patient won’t be prescribed meds, the letter will include any recommendations on changes to current meds.

I'm so grateful for all this input
I have definitely decided to seek an initial assessment privately. My hope is that I will see someone who will be happy to place me back in the NHS system if necessary. As Iam64 points out, waiting lists are so long these days and I'm not prepared to wait.
I was taken off all DMARDS when I was said to be in remission and only take codeine and paracetamol now for the Fibro and Osteo pain. I have to say I was very pleased with the monitoring I had when taking Methotrexate - my little record book made very interesting reading!
Again, it's the lack of current monitoring that worries me and, although I have tried to keep on keeping on, I feel things are getting worse and I am limited as to what I can manage with my hands. If it's found to be Osteo only that's worsening I will accept that but at least I will know one way or the other. The MPC joints are often troublesome with RA and my pain is always bilateral.
I feel for every one of you who suffers to any degree with any sort of arthritic pain.

I hope you get some help. Inflammatory and osteo arthritis mean chronic pain and fatigue 🙈

Charleygirl5

Please do not go down the private route with this ghastly disease. I agree with others; find a Rheumatologist yourself locally, and ask to be referred by your GP.

I think you would be wasting money if you were seen privately, drugs are expensive and should be monitored.

I agree with every word Marydoll said.

Do we share GPs? Mine works from home, so it's easy to do a full examination or even just look inside an ear!

Agreed. Sadly, private patients can be over diagnosed, over medicated, over tested, and over operated- because that brings a LOT OF MONEY for some doctors and businesses.

Monica 'You do not have to stay in the private system once you have a diagnosis and since almost all private consultants work in the NHS as well.'

I understand why people feel so desperate in the current climate. But this is illegal and so so wrong. The two should be totally separate, and private consultations should not lead to being picked up by NHS, and on priority list.

I do not wish to be placed on an NHS priority list but just to ask my questions and try to get to the bottom of what I am dealing with now. Once I have that, I will at least have the confidence to be more proactive in working with my GP to ensure nothing is being missed with regards to joint damage.
How can I possibly know when the only evidence has been found on ultrasound scans which I'm not offered. I just want to be back in the system as I'm so worried and daily life is becoming more difficult.
I appreciate your input Claremont - I did not know that it was illegal to have a foot in both NHS and private camps so to speak. I shall look into that further!

I can understand why the OP wants to see a consultanty privately. By the time she is referred back to NHS and back in the system, two years may have passed.

Unless you have lived with this vile disease, you cannot imagine the impact it has on your life. It is not just about the excrutiating pain, it's the lack of mobilty, its effect on other organs, brain fog and the ramifications for mental health.

So far as I’m aware, the previous practice of seeing a consultant privately and being put to the top of their nhs list no longer happens.
It is not ‘illegal’ to use private consultations along side the NHS. Given the NHS problems, it’s increasingly common.
Like Marydoll I understand and support the OP in her decision to seek a private consultation. The OP is correct, it will give her the confidence to be more proactive in managing her health.
Marydoll is so right. Unless you’ve lived with RA and the auto immune conditions it travels with it (or shared your life with a patient) you cannot imagine its impact on your life. Initially I was reluctant to take the medications because of possible side effects. I tried diet etc. my consultant said “this is an aggressive disease and we treat it aggressively. I’ve never had a patient in a wheelchair and I don’t want you to be my first, take the meds “. She was1 moving me from the highest dose of methotrexate to biological injectables. That’s 15 years ago. I’m 75 now and doing ok. I walk my dogs and live my life.

Just wanted to thank you all again. Having thought everything through and discussed with my family, I made initial enquiries with Nuffield Health and will have an appointment by the end of next week. Best wishes to those who are struggling.