I may have to self fund a trip to see a specialist but not sure how to find one and not sure how to qualify them?
I have a diagnosis of Adult Onset Stills Disease made in 1979 aged 17 but things have worsened in the last 10 years and I’m finally admitting I need to return to meds.
A complication at the moment is an undiagnosed new ( or associated AI) condition with different symptoms that I’m used to with Stills. GP dismissive of AI involvement and prescribed omeprazole and said call again if I keep losing weight.
So not sure to find a rheumy given I know I have RD, wait until things escalate and let NHS help or fund private tests that get to the route of the new problem and then fund the correct specialist or do nothing. No idea how much it all cost, several thousand no doubt so can only afford one go.
Any help and advice much appreciated.
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Stills
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Healthshare.org.uk has good info on how to find a consultant and its qualifications in England. If that’s no good then your local private hospitals always have a list of their consultants and their specialities and you can look up their qualifications on their sites. You should be able to find someone in or around Cambridgeshire with no trouble. Best of luck.
not sure if it’s any help but I’ve spoken to many people at Addenbrookes rheumatology clinics who speak very highly of Drs Clunie and Shenker who both do private work at Nuffield or Spire in Cambridge. Neither of them are my rheumy, she doesn’t seem to do private work or I’d highly recommended her. I’m not sure if they will be what you want but might be worth looking them up. I’m sure there are “rate my …… type of websites too which might give you more information and reviews. I hope you get help soon 🤗
A private initial appointment ususally costs around £250-300. However when tests are required the cost quickly escalates. Most nhs Drs won’t act on tests done privately and would insist on repeating them. Then you have the issue with meds, if you were to require biologics, they are not funded privately due to cost, even those with health insurance, as it’s around 10-12K a year. They are also restricted with meds like dmards, as they require frequent monitoring, and not something a gp can prescribe without a shared care agreement, which I would think would be difficult to set up, when your rheumatologist is a private one.
You don’t say what your new symptoms are, but assuming they are rheumatology related. I would look at qualifying criteria for whatever rheumatology condition you suspect, and push for referral. I have guidelines for referring for suspected spondyloarthritis, where you need to score four or more, and there will be guidelines for many other conditions. I wish you well. I would only use the private route as a way of being acknowledged and then them transferring you to their nhs list.
I have a diagnosis of Adult Onset Stills Disease which for me manifests as rheumatoid Disease. Diagnosed aged17 in 1979 now 61 and need to return to meds. No specialist, locum GP only who knows nothing of Stills or AI ( and won’t listen). Last med apart from pain relief that worked for me called Indocid SR capsule seems to be discontinued. All I want is meds’ to help what I know I’ve got.
Thanks for your useful reply and information, I think my best bet is to put GP under siege until he gives me a script.
Complicated currently by new malaise as yet undiagnosed by same disinterested locum only by phone, but he did prescribe omeprazole and a gastroscopy, colonoscopy pending if weight loss continues.
Hi StillsHope you don't mind me butting in! With reference to the Indocid SR, I remember it well! I was on the 75mg SR (Slow release) capsule overnight, and then about three 25mg capsules throughout the day. I was on this drug from the age of 16, for about 16 years. Luckily, I happened to cope with it well, but it used to be very difficult for lots of people to tolerate due to tummy issues. I do think the 75mg slow release has been discontinued, but I think the non slow release capsules in 25mg and 50mg are still available. (I think you can also get it as a suppository too). It can also be called Indomethacin.
I'm not sure how easy it would be to get it prescribed nowadays. As I'm sure you know, it's just a first line anti-inflammatory drug (NSAID), so may help with pain and stiffness, but wouldn't help if there any underlying systemic symptoms. Obviously you you would need a second line DMARD for that. I think it's also considered a very "old fashioned" drug now, and isn't used very much. I was finally taken off it in about 1999, as I had started to get tummy problems. I was switched to Meloxicam 15mg, which I had daily for about 22 years. That worked just as well. My current consultant switched it to Etoricoxib 90mg about 2 years ago, as I do have some ongoing tummy issues. I've also been on a daily PPI (Omeprazole then Esomeprazole for about 25 years). I have noticed a very distinct attitude change over the last couple of years to NSAIDS. Back in the early 80's they were an absolute mainstay and we were encouraged to take them daily. I continued with this until about November last year. I've always found them very helpful. Ever since I've been with my new Consultant (about 2.5 years), he's been constantly nagging me to cut down or stop them. He even says he would rather I have a higher daily steroid dose than daily NSAIDs. They really don't seem to like us taking them daily or for extended periods any more. As my steroids are a bit higher, I've managed to get down to one every 4 days. He's still not happy with that! It's hard when you've relied on them so long, and they've helped.
Sorry if I've waffled. I guess what I'm trying to say is, it may not be easy (or possible) to get indocid prescribed - especially if you're already experiencing tummy problems. If you can get any NSAID prescribed, you may well have to try a different more "modern" one. You may also be discouraged from taking it long-term or daily now too. Apologies as I'm not trying to sound discouraging, just sharing my experience of how things seem to have changed. Having said all this, your experience may be entirely different!! We all know these guideline type things aren't always applied consistently!
Good luck and I hope you find something that helps. X😊
this gets more and more interesting and a big thank you for taking the time to share your story.
In 1979 I was prescribed steroids, Indocid , enteric coated aspirin and distslgesics and some others I cannot remember. I can’t be precise as I was just 17 and my Mum cared for me and I was bed ridden for months. I do remember reducing the doses after a few years and by about 22 I was drug free except for pain relief as required. This has been mainly codeine based. I wonder if the current issue is caused by early meds.
A recent period of malaise and sudden weight loss (9 stone 12 to 8 8 in three weeks) led to blood tests showing raised GGT then a gastroscopy and colonoscopy pending to rule out cancer. All done by telephone appointment! Liver function was checked and ok but I do wonder if NSAIDs and Codeine may have produced some damage to the digestive organs. I also know Stills can affect the organs hence my wish to see a rheumatologist who knows before my locum GP prescribes omeprazole much longer; it gives me a dreadful constant headache for which I would normal take pain relief. You can see the circle .....
I think if a rheumy checks out the Stills activity and treats it - result!
If there’s no Stills activity then I must pursue this new illness with the next locum GP by phone or pay a private GP for tests.
Any way I’m rambling now, sorry. Huge thanks for your reply and may I ask how you’ve managed life with JIA, do you wear wrist splints and has it been life restricting at all?
Private Consultants can have a shared care agreement with an NHS GP….in fact most Private Consultants have an NHS Practice as well…because most Private Medical Insurance companies only accept a Consultant if they are on the NHS Register.
They put a patient on their NHS list…you have to wait to get an NHS. appointment, but then when you are prescribed drugs the GP can’t prescribe it’s done on the NHS…by the Consultant via the GP.
Thanks but I understand all that, I worked In the nhs for 34yrs. I was referring to whilst under solely private care, ie not having been transferred to an nhs list, it is difficult and almost impossible to be prescribed dmards which require strict monitoring. I have a shared care agreement between my nhs rheumatologist and gp, which allows my gp to prescribe my MTX, ensure my bloods are done when needed, and that they flag any issues to the rheumatologist. Whilst your private the majority of gps will refuse to prescribe the meds recommended by private consultants, and the patient has to pay the cost of a private prescription, which can be costly. Then if you have managed to get a dmard like MTX prescribed you would need the private hospital to organise your blood tests, which given initially is weekly then fortnightly, will quickly add up.
It can work… ..I have had a private consultant for years & only once did a GP demur because had no knowledge of the drug my consultant prescribed, but once they spoke to each other it went ahead fine & is still in situ.
Can highly recommend Dr Shenker. He has been looking after me for 11 years now since we moved to Cambridge. I am his nhs patient but also see him privately if something arises needing quick intervention. He is very approachable and a good listener. Good luck.
many thanks Pam-51 and glad to hear you have good support from him. Luckily I know my diagnosis of Adult Onset Stills Disease made in 1979 but I just need to restart meds. I will think about approaching him, thanks again.
Hi I have just seen a consultant at Nuffield health in Cambridge his name is Deepak Jadon and he also works for Addenbrooks for the NHS. He was fabulous and it cost,£240 pounds for the initial consultation but he certainly knows his stuff. I would highly recommend him.
I used privately when I felt I was confused by my diagnosis Dr Karl Gaffney at Spires in Cambridgeshire. The 30mins was worth it as quickly assessed my diagnosis correct but we needed to add fibro to the list and confirmed he would put me on Baritcitnib which he thought was a great drug which I was due to start.
Glad I saw him and helped me thro a painful anxiety forming time.
Hi Stills, if you can afford it then definately initially go private to see rheumatologist. As others have mentioned look up your local private Spires or Nuffield hospitals & you,ll find list of which specialists work there & short bio about them. I,m in Gibraltar but soon relocating back to UK & although I,ve been diagnosed RA already am going to go private when I get back to speed things up, resolve some issues I,m having over here & get back into the UK system without RA causing more damage. I,ll be 70yrs in a few mths so time isn,t on my side!
Once you,ve seen a specialist you,ll be able to take his diagnosis back to GP with results & any meds that,s prescribed. As an example I googled spires Cambridge, the speciality then rheumatology & heres, what came up
No probs Still & thxs I know sometimes I can,t even think straight enough to google or search for stuff or I,m so overwhelmed by everything lol brains functioning right now so thought I,d a link for u
your right it does all get overwhelming at times and one loses the sense of being able to cope and that’s where all the great support from the members kicks in 😀
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