How often do you see rheumatology and your GP?

How often do you see rheumatology and your GP?

I've noticed that some people see their GP really quite often and wondered if I was unusual in not seeing my GP due to my RA?

I only tend to go if I'm unwell and in need of antibiotics due to being immunosuppressed which is obviously RA related. I've started been invited for an annual cardiac assessment but I think it's not entire RA related as I have a stomach condition and the meds can cause quite significant heart damage.

I see rheumatologist twice a year and rheum nurse twice a year. I am currently stable on RA meds and have previously had more frequent appts.

I'm interested in other people's experiences.

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17 Replies

  • Hi Crashdoll, good to hear you're doing well and the meds are doing their job. When on mtx my RD was quite well controlled and I saw the Rheumatology team approx. every 3/6 months. I didn't see the GP for rheumy related matters as all was well and I didn't need to.

    Since coming off mtx in January I've seen my rheumatology team about every 6 weeks as my condition has not been well controlled at all leading me to ring them for emergency steroid jabs and changes in medication. This has also meant more frequent visits to the GP to get better pain relief. The uncontrolled RD has now caused problems in my shoulders and hands leading me to require physio, hydrotherapy and occupational/hand therapy. I seem to have had medical appointments of some sort virtually every week for the past 8 months. Maybe the NHS should take note and realise that holding back on the more expensive drugs is not really as cost effective as it appears on the surface! It'll be interesting to hear how others are getting along.

    Paula x

  • I'm currently seeing Rheumatologist every three months. I don't seem to have much to do with the Specialist Nurse. I see my GP whenever I have an infection. This Is all too often. At those

    Appointments, she does enquire about all aspects of the RD, side effects, how I am coping etc.

  • I'm currently seeing rheumatology nurse every three months as still not under proper control. Seem to be at the GP surgery quite a lot lately but only seeing the nurse for blood tests as my drugs are trying to take my WBC and neutrophils out. Don't see the GP much in relation to my RD unless my rheumy nurse has given the go ahead for a steroid injection. Possibly I am lucky as our helpline is open 11-12 Mon - Fri and you can generally get through the same day.

    I did receive a letter from the GP surgery inviting me for a type of 'well women clinic' but when I spoke to the nurse at the last blood test we decided it would create more issues as it was a 'computer based assessment' and thought we had best leave it alone. Farm

  • I went in to GP's recently for flu jab, but apart from that I haven't been there for ages - maybe a year or more as really no need as I'm pretty healthy. And GP is not interested in the RA, so no point bothering them with it. I see my rheumy probably every 9 months or so now, and there is a specialist nurse I can speak to or book an appointment with - although she's busier than the consultant so I try not to.

  • I last saw my rheumy in June and have no idea when or if he wants to see me again. He said there would be 3 monthly reviews inbetween his visits, so I was seeing someone every 3 months. No other appointments have arrived in the post. I see my doc when I don't feel well or have picked up some virus or other. I can and do phone the rheumy nurse and she does ring me back. I have 2 weekly blood tests as my liver is a bit unhappy with Leflunomide and Hydroxychloroquine, so my doc rings me if things have gone a bit wierd and he keeps a close eye on things. He then contacts my consultant who then rings me to discuss what the next steps are. It seems odd to me that when its active, has not yet become stable that the visits are further apart!

  • Certainly in my case reasonably regularly at the mo but that's because my Rheumy requested my GP review my pain relief & as the two she prescribed are being incrementally increased so every month. I also have my monthly bloods done the Surgery. Otherwise as it's shared care if I have a problem I always see my GP. I'm supposed to see my Rheumy every 6 months but every other appointment is with a Registrar & end up only seeing her once a year so my GP is really my only option between appointments. I have to say I have more faith in her than a Registrar who doesn't know me from Adam! I must say this is completely the opposite from my experience abroad when saw my GP rarely. This was because saw my Consultant every 3 months which is, in my view, a far better system as the regular appointments ensure if something's amiss it doesn't go unnoticed & is dealt with by the person who is qualified to treat the disease meaning there's far less pressure on GP's.

  • I was diagnosed in March 2014 and have seen a different Rheumy on the 3 times I have been and only seen nurse twice and on first occassion she was really offish with me and I felt she wanted to get rid of me as quickly as possible as it was late afternoon. I didnt even know there was a helpline until my second visit. I have not felt like I get much advise or help from any of them and dont feel listened to so far and I put this partly down to me having problems with the 3 Dmards they have tried me on. I ask everytime if I can have copies of blood tests and letters to GP and I never receive them. My GP couldnt even get through to them on the phone when he wanted to know what was going on. Feeling a bit on my own with it all to be honest. Joolz.x

  • i am not sure what you would want to see your GP for unless you have a problem. I see the nurse for BP checks, blood tests etc. I would only need to see the GP if there was a problem with any of them. Anything to do with the RD I would contact the RD nurse.

  • Hi Crashdoll

    I have a blood test at the GP's surgery every 3 months and then a review with GP every 6 months.

    The last time I saw the Rheumy at the hospital was February so I am overdue an appointment as these are supposed to be 6 monthly. My GP says my RD is under control although it's grumbling away in the background whatever that means.

    I hope you find all the advice you get through reading other peoples stories helpful, I know I certainly do. xx

  • Hi Crashdoll. I'm one who depends heavily on my GPs although I'm not your normal NHS user because I live on an island. My GPs have been my rocks but at times they have also been a curse because, at the end of the day they are generalists and when you have quite a rare form of autoimmunity you need people who are seeing as broad a range of patients as possible - and Scotland's more sparce population makes things harder for those here with rare diseases I feel.

    I would love to have had a rheumatology nurse or a rheumatology helpline I could fallback on when things weren't going well or if I had questions regarding medication or DAS - but unfortunately my GPs are all I have apart from a distant and overworked rheumatologist.

    If I had been able to tolerate drugs then I think I would have hardly ever visited this site because my symptoms would have been well controlled by now - as my Hypothyroidism is. I only find out if I'm on my rheumatologist's clinic list when he's here about three weeks in advance of an appointment. I have been seeing him four monthly for the past two years but now, just when I probably need to be seen, I find I'm not on this next clinic's list. I do know how to address this if things become very urgent for me but I don't think all RA patients here would and therefore the GP is always the first port of call for me and for others with these type of chronic conditions where I live. I tend to see them on average once a month - sometimes more and a few times less. I think they find these consultations pretty frustrating for the most part - as do I, but there we go.

  • Interesting replies, thanks all. I'm saddened to hear that some people do not get a good service from rheumatology. I feel lucky that both nurses at my hospital are flexible and avaliable for appts at short notice.

    While my GP surgery are good, I don't deal with them for managing my RA as they usually advise me to contact rheum anyway!

  • That's fine if your Rheumy nurse isn't dismissive of you at the first "between Rheumy appointments" appointment! The one I was allocated was quite off with me as I was controlled on my meds & questioned why I needed an appointment with her. My h was with me & we independently drew the same conclusion so I'm pretty confident of my thoughts of the meeting. I told her that as I'd been off all my meds for 3 months before I saw the Rheumy & gone through the worst flare I'd ever had at the time my meds were reinstated, she considered an appointment in a further 3 months was necessary to ensure I had become suitably controlled. This made no difference to her attitude & never been asked to attend an intermediate appointment again until I received a letter asking me to attend & I saw a different Specialist Nurse who couldn't have been more different. Having said that neither did she instill me with confidence as she questioned my WBC & neutrophils as they were higher than she'd like which suggestion infection. She had me do a urine test & said she'd ring me a couple of days later if it needed further investigation or antibiotics. As I heard nothing I dismissed it but at that months pain med review my GP happened to mention that my WBC & neutrophils were slightly raised but nothing to be concerned about & put it down to a 24hr bug I'd had around the time & which she'd been aware of around the blood test was taken. I told her about the tale with the Nurse & she suggested I saw her for anything RD related from that point on. Reading between the lines this wasn't the first time she'd happened upon both of the nurses (she also works at the hospital I attend) so I took her advice & happy with doing that. She agrees that the system I used to have works far better (3 monthly appointments with the same Consultant) as she's experienced it herself through an immediate family member so guess that has had some impact on her suggestion, which has worked well so far.

    Sorry, this has turned into a grumpy reply! I guess you gather I'm not impressed with the way the system works in the Rheumy Dept/hospital I have to attend. I suppose it doesn't help that not only do I not see the Rheumy I chose & my initial appointment cancelled an hour before the appointment but the one I do see is at a different hospital, one I would never choose to attend!

  • I see my GP more often than I'd like because the rheumatologist has let me down badly. She was very concerned about my 'mood' (i.e. was I depressed) because I suddenly lost almost all mobility and autonomy in February and the rheumatologist sort of disappeared. She was impossible to contact.

    GPs have several partners, you can opt to see any of them. There are advance appointments and ones on the same day if you phone at 8am. I try to keep them informed about the results of hospital appointments too as it can take a while for the clinical note to come through. .

  • I see rhmy 6 months bloods done monthly.Get called into doctors once yearly for a face to face talk about how i am feeling but that is only contact with GP

  • I see my rhuemy every 2 years a nurse once a year, I would love to have a 6monthly consultation never going to happen, as my own doctor is intrested in ra he is great but hard to get approx waiting time 4 weeks. Im assuming most of you with lots of rhuemy and nurse imput are south of border, as there is few people I know see rhuemy every year never mind 6 months. I wish, rsorry for rant xx

  • Hi Crashdoll! I glad to hear you are stable right now.

    I see my rheumatologist every month with monthly lab work. This has been going on since I was diagnosed about 2 1/2 years ago. I'm on Enbrel, methotrexate inj, plaquenil and two stomach meds. I think I'm as stable as it gets. I have been off prednisone for over a month. My rhumey said its so bad for me she'd rather me neon pain meds. Wow! I'm blabbering lol! I see my GP for other things that come up. If I'm in to much pain he gives me a steroid shot. Sometimes it's hard to tell if the pain is RA or fibromyalgia.

    I do hope you stay stable!

  • no i am Scotland

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