I have just been to my first NRAS meeting in Cambridge. I was reluctant but!!!! It eas a good experience! Well organised and a very friendly supportive group. I have come home armed with a lot of books and information . Thank you!
One question , the blood tests I have had for RA have all come back with no inflammatory markers . But, I have letters saying I have Ankylosing Spondilitis , Psoriatic arthtitis, seronegative, something wrong with my pelvis, and facet joint. So I am still confused as to what I have. Louise.
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Luludean
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Are you seen by rheumy team in Addenbrookes? You can use the hospital My Chart, which allows you to send a message to the.rheumatologist dept and they will arrange for a nurse to call you to answer questions.My chart also g ives you test results and upcoming appts etc. You should be able to ring the rheumatologist dept and ask for a nurse to call you back.
I am not sure I do Luludean I am almost a year into initially seeing the rheumatologist consultant. And I still cannot get anyone to explain my diagnosis either. The consultant has left, the nurses cannot understand it and neither can my GP. Its so frustrating.
I am due my supposed 3 month follow on appt in February, almost a year on and after so many phone calls from me to almost beg for one.
The nurses can answer simple general questions such as side effects and about meds.
I know I am seronegative inflammatory arthritis but the rest of his diagnosis? No one has a clue.
I was meant to be seen a year ago , had two disastrous tel apps with nurse practitioners who simply screeched and did not let me speak . Have another one this Thursday . Had a letter from one consultant 2 years ago saying he thought I had been mis diagnosed , nothing changed , then I saw new one , nicer, who seemed to agree but nothing changed, she immediately put me on 3 weeks of prednisilone . I then did not sleep !! It was bad. I left message on helpline saying I was over reacting to prednisilone and could not sleep. Got a text back saying « insomnia is not on our departments remit ». Adilumabab injections caused me to have frequent utis . Department would not discuss. Cardiology then stepped in , I phoned the company who delivered the drug , they said straight away that uti s were a known possible side effect.., it goes on . So yes, I have lost faith in and respect for some in the department. Had no medication since a year ago.
But “ pain clinic “ are great . Had steroid epidural and guided foot injection wiith no fuss( long wait of course) and they worked. I hope you get good resolution soon . Do let me know. L
Thanks I will ket you know. Pain clinic appt nowhere in sight yet, but I have consultant appt next month and hand occupational therapy in May. Its a start, makes me feel less forgotten.Its a bit mad when someone says you cant be getting certain side effects when we clearly do. I believe it was someone on this forum who said nurses dont have access to our medical record when they phone. Puts them at a real disadvantage to give enough advice.
Glad the epidural and injection gave some relief. I think many medications need adjusting as too our conditions progress and our bodies suddenly not finding the current meds effective any more. Not much fun sometimes is it? Take care
I'm sorry to say I really do not have a good impression from my experiences so far at Addenbrookes rheumy. I feel unsupported and left in the dark about my own diagnosis and progression of the inflammatory arthritis. I know they are under enormous pressure.
The nurses when I speak with them are always nice, but they are under so much pressure I always feel rushed not able to discuss as much. I have used the amazing NRAS phone line too.
My last call with the rheumy nurse, she said I had too many questions for a 'short call'. I explained this is stuff I wanted to discuss with a consultant but the dept would not allow me a follow up call. After checking she said all my requests for an appt had been cancelled and finally ensured I now get the f2f with a new consultant.
In short, I feel dissatisfied and have little confidence. Am sorry you too feel the same even after 25 years.
Hi davannah , yes as a connaisseur ! i have always found cardiology, gynaecology , gastroenterology and the pain clinic so humane and efficient .
A and E over run with people unable to see gps and others with problems following « private « treatment. And addicts , and drunks and thugs , BUT what amazing , calm, stoic staff !!!!!!! All nationalities and ages of medics working together and maintaining a sense of humour!!! So it is possible !
I cannot fault the urgent treatment centre at Addenbrookes earlier this month after I had a fall and ended up needing crutches and physio. I was in, triaged,x-rayed and diagnosed within 2 1/2 hours.I genuinely appreciate how hard the staff work in each dept I have had to visit, including rheumatology. They are friendly and efficient. But somehow the rheumatologist dept doesnt seem to be able to give a better 'service' on the whole. Maybe more stretched than other depts?
My experience with Rheumatology at Addenbrookes is 100 times better than my previous hospital. I use the app to ask questions I also like that I can access my results without having to wait for an appointment which at my previous hospital was invariably cancelled and my ALT which was 643 was only picked up after a nurse appointment, so despite having my blood tests every month my biologic was being prescribed and delivered. When I did see the consultant and questioned it he shrugged his shoulders and said we are human....But I did point out that I was informed that my bloods had to be checked before the prescription was sent to the delivery company.
the blood tests are not necessarily 100% conclusive, especially if you are sero negative (ie the common markers don’t show up). So you can still be diagnosed based on other factors, and there are lots of different diseases that are related.
I have ankylosing spondylitis, that was initially diagnosed by X-rays of the sacroiliac joints. Nass the charity for AS, state 50% of patients, never have raised inflammatory markers. Mine never rise, yet the disease still progresses, as shown on MRIs. I believe psoriatic arthritis is the same. To be diagnosed ankylosing spondylitis, as opposed to axial spondyloarthritis, there needs to be evidence of sacroilitis on X-ray if grade 2 bilaterally, or grade 3-4 unilaterally. So it’s black and white with ankylosing spondylitis as opposed to axial spondyloarthritis, which can be a grey area. So you clearly must have evidence on X-ray to have been given that diagnosis.
Runrig, you are SO informed!!!! I will note down some of the things you posted and calmly and sensibly ask the nurse( tel app on Thursday) for some clarification. Will let you know if I am strong enough and, get some answers. L
Some doctors do tend to rely on blood results but the more experienced and sensible ones take the whole patient picture into consideration. The precise label doesn't really matter as long as the inflammation (because of the overactive immune system) is controlled.
I have had a variety of diagnoses over the many years but my initial presentation was (perhaps luckily for me) absolutely classical with swollen painful joints, so I was treated promptly. I'm sero-negative and often have low inflammatory markers despite quite obvious disease activity clinically. I'm certainly not as badly affected as some, although now I'm in my eighties the long term damage to my joints is rather limiting. Treatment is so much better now than it was when I started with this condition so don't be too apprehensive.
You have hit the nail on the head !!!!! I long to be seen or listened to as a whole person . I did ask once for a multidisciplinary consultation , I never dared ask again .
Sounds like you have similar to me. My inflammatory markers were only very high at the start, but unremarkable thereafter. I too have psoriatic arthritis and spondylitis.
what a stressful situation. I appreciate you may not have another department near by but you are entitled to switch and your GP can help with a re-referral.
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thank you and a question about enbrel
Biologics question
A question for all the women.....
More a rant than a question
