NHS Rheumatology V’s Private consultant

[Kerryann82]

good morning, I wanted to ask if anyone has any tips on how to navigate the NHS rheumatology appointments.

I was tested by GP for antibodies, inflammation etc and the GP referred to NHS Rhematology. Due to the wait I had a 1 off consultation with private doc as advised by GP as I had been so unwell for over 4 years. Unfortunately before I could start on any treatment for Lupus, APS etc they found that I had latent TB and have had to struggle on with autoimmune symptoms whilst being treated for TB for 6 months.

I now have an appointment with NHS rheumatologist on 10th Feb and am starting to worry that the NHS consultant will be dismissive of my symptoms and discard the diagnoses the private consultant and deny treatment.

I’ve read and spoke to a lot of people who have had this experience with the NHS docs wanting more of a watch and wait approach.

I just can’t stand to live like this anymore, the widespread pain in joints, raynauds, nerve pain, fatigue, rashes and frequent infections and viruses are making my life so difficult.

I just want to be the best Mum, wife and nurse that I can be and it’s feels that I’m gradually and painfully fading away. I’m not able to enjoy life as I knew it anymore, struggle to socialise or manage my home.

im so anxious about this appointment and worried that the NHS rheumatologist won’t commence biologics or immunosuppressants as the private consultant wanted to do x

any advice on how to navigate this would be appreciated x x

[Star13]

So sorry to hear about your issues. I would prepare for your appointment by taking with you any correspondence from the private Rheumy and GP. Then make a bullet point list of symptoms with dates if that helps build a picture and a photo or two of rashes if you have them.

Also write down any questions, try and limit as time will be short. Also if possible take a relative or trusted friend who can support you if you get flustered and step in.

If you find you are being bamboozled don’t be afraid to just sit tight and quietly but firmly say that you have waited a long time for your appointment so you would appreciate being heard. That normally gets their attention!

I do hope things go well.

[Kerryann82 in reply to Star13]

Thank u so much x

[KayHimm]

Kerryann82,

Did the private rheumatologist go over your labs and give you a diagnosis?

It is always worrisome to see another specialist. Remember they all get the same training so there shouldn’t be significant differences in opinions.

Wishing you luck

Kay

[Kerryann82 in reply to KayHimm]

Yes and the nhs doc has access to same results so fingers crossed x thank u x

[Chris21]

if it helps, my rheumatologist (nhs) is the same one I saw privately. you might be lucky that yours is the same or is a collegue of the one you saw privately. It certainly made it easier.

like other comments, take any letters you have with you. hopi g it goes well and you get the help you need.

[BeeManShrop]

Hi Kerry

If your blood test results plus your various symptoms point to SLE and you become diagnosed, I would suggest that don,t be too much of a hurry to get onto the biologics. As I understand it they are on the top level of treatment and are quite strong. Most people start with the gentlest option which is Hydroxychloroquine, you then graduate to something like methotrexate and if that does not work then you go on to biologics. This was the road that my wife followed but when she got onto the biologics we think they were so strong that they virtually wiped out her immune system resulting in various infections taking hold.

She was taken to hospital and immediately taken off all meds, after 6 weeks she was started on hydroxy again and after 2 years (it is a slow road to recovery!! so be patient) her blood tests show that the SLE is well under control even though some of the symptoms still linger on (but not excessively).

Hope this helps and good luck.

[Kerryann82 in reply to BeeManShrop]

Thank you so much x

[StriatedCaracara]

Just reiterating what BeeManShrop said about drug treatments and hydroxychloroquine being the starter.

Here is a link to a post on this.

healthunlocked.com/lupusuk/...

[Kerryann82 in reply to StriatedCaracara]

Thank you yes this is what I am hoping too x x

[Jerg]

hydroxychloroquine is the best starter medication in my opinion

[LalSD]

Hi, my daughter got her referral from private doctor to be referred to him on NHS. GP did not believe her symptoms was reluctant and dismissed her. The same consultant wrote to the GP demanding referral. She is now in safe hands. Gp's can't fail their duty of care!!!! And either way both have duty of care. So please ask your private consultant to insist. They can't play with your life... hope you get better... L x

[Kerryann82 in reply to LalSD]

I’m glad that she is sorted now, I’m in absolute agony at the moment with inflammation and my joints are worse than they have ever been. I’m keeping everything crossed that all works out well x