Rheum drs I see in USA don’t even look at my hands & feet-no physical exam- they just do bloodwork & now are recording conversations during visits. (Also they offer no team-approach (PT,OT, etc) that I’ve read about).
(Most of my damage is in hands & toes.)
Have changed rheums 4 times & they are all the same…
Discouraged & have substantial joint damage. fatigue, pain & high anxiety.
Hm, I’d be tempted to whip out my phone and tell the rheumy you’re recording the conversation too.
I’m in the U.K. and since about 2014 I’ve rarely seen the same rheumy twice and none of them have been my named consultant and often I think the ones I see are temporary members of staff, I’ve never had or been told about a specialist rheumy nurse either. I used to be seen annually but it’s been two years + since I was last seen and it was two years + since I was seen the time before. I can’t say I’m too bothered because on the whole I’m ok. I’ve bern told I’m in remission but how they know that I’m not sure. I think rheumatology is a very busy department.
I’ve only ever had one X-ray of my hands and that was several years after I had started seeing a rheumy and I’ve only ever had bloods taken once after my first visit and it was my GP who did the first bloods I had done, no one has ever looked at my feet - in fact last visit I was weighed and measured with my shoes on, even though I offered to take them off.
Looks like rheumatology might be the same world wide.
I must be lucky. I nearly always see my consultant (very occasionally I see one of her registrars). She always examines all my joints, even though feet are not included in the DAS score she still asks about them, however I have had significant problems with my feet and substantial surgery to both of them. Rheumatology nurses went through a patch of changing frequently but the ones there now have been there a while. I’ve not had a huge number of X-rays but I have been referred for scans whenever it’s been deemed necessary. Thankfully my rheumatologist always goes on physical examination and symptoms as my blood tests never show inflammation.
That’s so awful. UK treatment must have gone downhill since I left! I had the same rheumy that I saw every 3 to 6 months. Had base line x-rays repeated every 2 years, plus OT and podiatrist.
Here in France my treatment is exemplary. My rheumy is my rheumy, and I can book appointments when I want (although have to do it well in advance). She checks me all over, plus ultrasounds any joints that look dodgy. Weighs and measures me, and checks through blood tests. Plus I can see other specialists as needed, and have had MRIs, x-rays, CT scans etc when needed.
In Scotland I'm very satisfied with the treatment. Same consultant for about ten years now and he always shares his thoughts with me, I have 6 mnthly appointments this year had a phone appt followed a month later with a face to face which led to another for my next infusion. Blood tests, xrays and physical examination of joints so shoulder and knee raises. When I go for the infusion this week I'll probably see the same team of nurses, seeing familiar faces is reassuring particularly about their experience and how they're supported in their work. I get the impression that avoiding strikes and negotiating with the unions has really paid off here - so far.
I’m very satisfied with my care too.
I've had RA for 20 years and while my 3 different rheumatologists during that time, have paid attention to my hands, I can't remember any of them looking at my feet, which are quite badly deformed as indeed are my hands. That said, rheumy did tell me to ask my GP for referral to a NHS podiarty clinic, which I did and have regularly attended for a number of years.
Blood tests have been the only checks I've had for almost 4 years. I was dx. in 1971 as a child.
I used to be seen twice a year but Covid reduced that to a phone call and I've recently resorted to contacting PALS to get an appointment. I had a read on the NICE Guidelines and understand adults with RA should have at least an annual review.
I am so sorry to hear of such awful experiences for you. I am very blessed as I see my rheumy and she is my rheumy every 3-6 months. Bloods done as standard every three months but can be done anytime if having a flare. I always have a thorough check up from head to toe every time too. I’ve had some issues with how my rheumy communicates with me at times and often felt she was really annoyed with me but saying that she has always been thorough and in the last year or so we seem to be working together a lot better which is good. I really do count my blessings as I read some awful things about some peoples consultations. My rheumy is very thorough as are the specialist rheumy nurses usually. x
Here in Staffordshire my original (diagnosing) consultant is often not available so I see his colleague … which I’m ok with. I chose my consultant because of his keen involvement in trials and forward thinking etc so can’t complain if he’s busy elsewhere. The consultant I see says I should be reviewed every 6 months but the reality is that it’s usually every 10 months due to NHS pressures. I attend hospital phlebotomist for blood tests every 2 months and if anything abnormal shows up rheumatology call me to discuss. I always ask for access to my blood test results anyway so I can monitor personally. I have telephone access to a rheumatology nursing team 9-12 5 days a week.
I feel well catered for but then my RA has behaved itself since going on to biologics 2/3 years ago, so I’ve not needed much support.
I’ve had very good treatment with my named consultants, in the 38 years of having RD, I’m on no 3 now, she is very thorough and examines my hands each time, but not my feet, I have it mainly in the hands and feet, many ops on both my feet and hands. I have a yearly check plus 3 monthly bloods. I see the nurse also in between and telephone calls. They also deal with my osteoporosis and injections. X
Hello Hisue, Similar story in Uk . I have managed my arthritis now for over thirty years with varied pills, creams and potions. It is not RA to my knowledge, however the joint changes are the same as RA. I can cope with the hands & feet pain but recently I have got a low back pain but if you go to GP they will say its just arthritis, when in fact it could be any number of things. Its the approach to the illness & disability it causes that makes people feel distraught like you say. In my case and many other peoples cases like yourself some of us have other illness which impacts on coping with the arthritis. How can we change peoples approach to managing our arthritis do you think?
Morning. I can’t even imagine how difficult it is to have a chronic health condition and be at the mercy of US healthcare.
My recommendation to you is to read this website and take direction from there. They are at the forefront of much research:
My hands are always examined but feet never because there are so many small bones in your feet it would be impossible to check them. That is why feet are not included in the DAS score.
where are you in the USA? Big city? I’ve never had such a problem. If you ared in a big city….try a smaller town maybe?
I also use an orthopedist for my RA too. I go to him for cortisone shots sometimes, if I cannot get into RA dr quick enuff. The woman is ridiculously busy. Plus she is Asian. And I mention this because they seem to care more it seems to me. Pay attention to your problems?
Awful the problem you are having.
I'm in the US too (Florida). I have had RA since Oct 2021 and I have only had one rheumatologist. She did a thorough physical exam during my first visit and had scans done of just about every joint - hands, feet, knees, hips, spine, elbows, shoulders, and neck. They were for baseline but some did show damage that I assume happened during my first flare-up. Since then I have chosen tele-visits which are video over computer where we discuss how I have been feeling and any side effects from the meds du jour. (If they work, they are trashing my liver. If they don't have bad side effects, they don't work - so I am on my 5th med now.) I can leave a message with any questions I may have on her website, and she always answers within 24 hours. Every 3 months I have bloodwork and last October we repeated the scans. I am very happy with my physician, so I suggest you keep looking for one who is a better fit for your needs.
Feet and RA
RA and Feet
RA and feet
