Hi everyone! I live in Spain and only get to see the rheumatologist 3-4 times a year and I wanted to know what your Dr consultations entail
I have had RA symptoms although the Dr doesn’t actually have a diagnosis for me. My ESR and CRP levels have been high with symptoms of swollen hands and feet, stiff hands in the morning, muscular pain that would come and go, fatigue and Raynauds. But I tested negative for Rheumatoid factor.
Thanks to the MTX and steroids (Zamene) I’m much better except for the Raynauds which is still really painful. For the first time I’m beginning to develop painful knees too.
I have my appointment next week and I’ll get the results of my blood test and all my joints will be examined manually. The dosage of the meds modified and I’ll be sent on my way until the next appointment which will be in May. Should I be having x-rays done? Or MRIs?
In my experience with doctors here in Spain, they don't really provide much information so I land up having to google everything!
I would really appreciate any advice or tips.
Thank you so much for taking the time to write!
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sunshinegal
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Hiya sunshinegal. I was diagnosed in 2008 seropositive & returned to the UK in 2013 after 11 years over there & must say my experience was quite different. I had been forewarned before we moved back that the NHS had changed in that time & I must say I'm inclined to agree. I was quite surprised how different it is though. Here I see my Rheumy once a year & a Registrar at 6 months. I have access to a Rheumy nurse but for reasons too long to go into I don't bother any more. Going from 3 monthly appointments to yearly has been difficult, my GP taking the reigns far more than she should have to frankly, particularly after incorrect assumptions & decisions about withdrawing meds were made by a Registrar without checking with my Rheumy first sending me into a tailspin. Since returning I have seen my Rheumy twice & a Registrar once rather than my allocated Consultant what would have been 7 times! Registrars never took appointments, only sitting beside the Consultant whilst he/she took the lead as per normal & only once given the ok from me could they perform examinations!
Have you a English speaking GP? If so it could be worth asking his/her opinion of your treatment or if you can find the GUIPCAR site in English that should help you understand what you should be able to expect treatment & protocol wise from your Consultant.
I'm wondering if language has been a barrier, not necessarily from your side! I say this as all three of my Consultants rather than not giving information encouraged me to be engaged totally with my condition, be proactive & the ethos was that the patient has the right to be informed of everything relating to their condition be it Rheumatology, Neurology or my GP. Even to the point of my first Consultant giving me his mobile number if there was anything I needed to ask or if I was concerned about anything between appointments. I have a file full of patient-held records, blood tests, x rays, DEXA scan results & imagery cd's from Spain. All I have relating to treatment here is my original referral appointment choice letter & 4 report letters! I didn't even get my choice of Rheumy nor the hospital I preferred to attend, some worth the NHS choose & book was for me though I appreciate it does work for some! From diagnosis X rays were ordered as & when necessary & by the time I'd returned from Radiology to his consulting room he had them on his screen to discuss them, none of this have x rays & then make another apointment to discuss them months down the line. The only testing/imaging which couldn't be discussed the same day was if a DEXA scan was ordered because that was in the Diagnostic Clinic in Alicante city not the hospital.
Here my feet are ignored as they're not included in the DAS 28 unlike my previous examinations where particular attention was paid as that's where my RD first presented so always my weakest point & troublesome. Similarly my hips, back & neck, OA related.
Gone on too long but I could make numerous further comparisons! My h & I have retained residencia but unfortunately no longer pay into the system otherwise I would gladly travel over there for my appointments, even if it was necessary to reduce them to 6 monthly! I'm sorry your experience is so different to mine, I find it unusual & most odd as myself & my immediate family have had treatment, ops & outpatient/A&E treatment in 3 different hospitals & all were equally good experiences, as good as hospitals can be anyway!
You get to see a rheumatologist 3-4 times a year? thats three times more than I do (rural Scotland). Its been nearly a year since I last saw mine, and the most I would see them is once every 8 months, and I'm in a similar position to you where although I have a diagnosis from a private rheumalogist, my current one isn't accepting it, so to all effect, I'm like you and undiagnosed.
Have you asked about spondyloarthritis if you are negative for RA? Thats another form of inflammatory arthritis. Also ask if they have ruled out other connective tissue disorders. Spondyloarthritis would normally have a sacroiliac joint xray or a SI and lumbar MRI to check for inflammation, as thats where it would be required to be seen to get a diagnosis. If your hands are bad, ask if an xray would identify other forms of inflammatory arthritis (in PsA the joint deformity has a particular look to it that an expert radiologist should be able to differentiate from osteoarthritis). If you have ever had any kind of skin rash or nail problems that might possibly be psoriasis then make sure you tell them that too, as that could point to psoriatic arthritis - even if psoriasis is not a problem now. Inflammatory bowel disease also goes along with spondy in a lot of cases, so mention any gut problems you might have had too.
Lots of people, myself included, are negative for the Rheumatoid factor but it isn't a conclusive test for RA anyway so makes little difference. Have you had your anti-CCP tested as that's a bit more specific? But generally diagnosis should be made on a combination of blood tests, physical examination and what you tell them about your symptoms.
But it's strange that you've been prescribed MTx without a firm diagnosis - or do you mean that they are sure you have an auto-immune inflammatory condition but just not clear which one (there are loads!).
Unlike others I have had a brilliant experience with the NHS, and a completely useless experience with a French rheumatologist who was very patronising and not communicative (my French is fluent, so not a language barrier either). So as a consequence I've stayed resident in UK so can keep with my same NHS consultant, even if that means I only get to spend 25 ŵeeks a year in France.
I now only see her every nine months or so, but that's fine as I'm fairly stable. And I can phone if problems in between. She always explains things well, and answers questions I have and isn't constantly looking at her watch. But to start with I did have to work a bit at building a relationship with her. I got the feeling that they are so busy that if you don't ask things, they don't bother to explain. And if you don't tell them that things aren't right they always assume that everything's fine. So I'd suggest that you write down your list of questions and try to sit tight until they've all been answered.
I have x-rays on hands & feet about every 18months to 2 years just to check progression of the disease. Which is quite enough for me as don't want more X-rays than I need. And I've only ever had MRIs when there has been a specific problem that couldn't be verified by any other means - which was basically excruciating back pain that turned out to be 3 crumbling vertebrae. So mostly my consultations are conversation, having a few joints checked manually, a DAS score calculation and that's it. (In fact the only positive about the French rheumy was that he checked every single joint every time which the NHS certainly doesn't have time for).
That will tell you what should be happening, and you can press for that standard.
The pressures on rheumatologists and their team are enormous and many become disgruntled and apathetic because they are able to do what they know they should. There are too few of all all the members of staff in the rheumy team to give a good or even adequate service.
Unless you are assertive you won't even get the minimum.
Spain's Rheumatologists follow the GUIPCAR guideline, closer to the ACR (American College of Rheumatology) than the NHS's oldtimer. There are some subtle & some significant differences so the link won't really be applicable, nor that easy to compare I'm afraid. The best thing would probably be to ask her GP for the link so she can read it herself in English.
Hey...I have recently developed RA..i have excruciating pain in hands and fingers..The doctor has recommended me celebrex and rheumatrex..and some kind of exercise.I think you should undergone the MRI and tests for accurate diagnosis and treatment.
Hello, I live in Ireland and I have to say that from day 1 I have had thee most wonderful experience with the NHS and my Rheumy team. When I was first diagnoised I spent almost an hour with my Consultant and he answered all thequestions and concerns I had.
Four years on I still have a great relationship with al of my Rheumy team. The Rheumy nurse assigned to me at the beginning is at the end of the phone to me anytime I need her. If she is busy when I call she always gets back to me.
Before I was started on Bio's and in awful condition my Consultant couldn't get me on to his list for the day but he said if I could get tothe Rheumy ward for 8 AM he would see me. I did manage to get there, with the help of a very kind neighbour, and he gave me a full hour of his time.....even if it was in a very small cramped office.
Another thing happened with my Rheumy nurse that I will never forget and tell everyone about at every oppertunity......my body was beginning to twist into the shape of a ? mark I was in such a bad condition (I have to say I was waiting to get on Bios at the time and so was off all other drugs except basic pain relief). I foned and was told to come over to the Ward. When she saw how bent over I was she sat on the floor in front of me so she could see my face when talking to me. I have never forgotten that. I knew I was being listened to and that she appreciated the condition I was in.
Yes the NHS isn't perfect and Dr's and nurses are human and have good days and bad. I believe they do the best they can under sometime very difficult conditions. There are things done or not done that have terrible consequences but I have to say that, IN MY EXPERIENCE, they have been first class and I'm very, very grateful to have them on my side fighting this disease with me.
Every three months for me as my med is still fairly new. I was down to twice yearly when no problems and everything working well. I see the main consultant mostly and was told that if I see a Registrar etc then the next time to ask for one of the main consultants when I go so that I am being seen by a senior person at least every six months.
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