How often are we supposed to be seen by our rheumy??

Hi all, I was just wondering how often we were meant to be seen by our rheumy and how often we are supposed to get our bloods done? I was diagnosed a year and a half ago and have seen my rheumy twice and my dermatologist (for severe hair loss) twice. My rheumy has just sent me my next appointment which is for a year away! Recently, I've been getting new symptoms, I've developed an awful malar rash which I hadn't had before and this morning I woke up with really puffy eyes and swollen fingers. Am I supposed to be telling anyone about these new symptoms or just wait until my next appointment? My husband thinks I should be going to the GP so that these new symptoms will at least be documented. I had a bad bout of costochondritis in October which my GP said was related to lupus and she was very supportive but when I told my rheumy at my appointment in February she completely dismissed it. Am getting very confused and also feeling abit lost. Any advice would be greatly appreciated. Thankyou x

13 Replies

  • Hi

    I would agree with your husband. See your GP, so that there is a record of these new symptoms. Tell him when your next app is and he may say he will contact rheumy on your behalf. If not there is no harm in contacting him via secretary yourself if you feel you would like to discuss new symptoms.

    And they will contradict each other. Even on the same ward 2 consultants will have different criteria and opinion for patient care.

  • Hello. I would love to know the answer to this. I was diagnosed with sub acute cutaneous lupus in November 2013. My rheumy has just run a load of tests, ECG, heart ECHO, lung function, X-rays if chest, hands and feet and 13 bloods and 3 urine tests, but she has already said that she doesn't foresee any issues and after seeing her for the results she is happy for me to be reviewed by dermatologist only. I haven't seen an NHS dermatologist yet, only one in December privately. I am not really happy having lupus and not being reviewed by a rheumy. Are there guide lines or minimum standards that apply?

  • I'm not sure. The usual guidelines for the NHS are NICE guidelines. Google NICE. I know their is a CFS one

  • thanks for the reply. I'll try and see my GP tomorrow and see what she says about it.

  • I'm not sure there's a maximum or minimum Belee and sorry to say, like the majority of us being treated via NHS, unless you happen to have a GP who's interested in lupus you're likely to get caught-up in the merry-go-round of GP simply asking you what your Rheumatologist thinks when you present with a problem. I pretty much gave up asking (or seeing) my GP about anything other than annual prescription repeats but it's important, of course, to have worrying or serious symptoms properly recorded. These *ought* to be passed to your Rheumatologist who should then decide whether to see you as a matter of urgency. I used to have a consultation with my Rheumatologist every six months until c. 7 years ago when his caseload became so great that now I only get to see him once a year and a locum (who's a GP, lol) inbetween - it's apparently been impossible for him to find a Rheumatology Registrar so not his fault and neither is his ever-growing patient list. Appointments with the locum GP are pretty much a waste of time but at least I know he'll report anything pertinent to my consultant immediately. Otherwise, if I feel it's something that absolutely can't wait, I pay to see my Rheumatologist privately and consider it money occasionally well spent. Sorry not to sound more optimistic but I can only see things becoming worse for people with chronic diseases with swingeing NHS budget cuts and an ever-ageing population. Hugs x

  • Hi there

    I think it depends on a variety of factors; how well you are, your rheumatologist and the pressures on your rheumatology department.

    When I am well and stable I see my rheumatologist annually. When I'm unwell I might see her more often - from 6 weekly intervals, 3 monthly, 6 monthly, depending on how much I need followed up. Often my rheumatologist has no appointments for 9 months but she will overbook in order to see me.

    With your new symptoms, I would see my GP to discuss them. When I get new symptoms I sometimes wait a week or so, depending on what it is, to see if it will clear up on it's own or develop a bit more, and then if necessary see my GP. My GP will then contact on call rheumatology for advice. I see nothing wrong with this approach and indeed am happy with this relationship with my GP. It means my rheumatologist is only contacted when necessary AND I maintain a good relationship with my GP. Both of which, in my opinion, are important when living with a chronic medical condition.

    I hope this helps. X

  • Wow, you managed to get your lupus under control so that you only saw your rheumatologist once a year?? That's great!

  • Hi purpletop.

    Yes I've been very lucky to get my lupus under control on meds. It had flared and then I've had to go on more meds, but I'm controlled again on the new combination.

    When I was first diagnosed I wasn't at all well and wondered if my symptoms would ever be controlled. But now I have a good balance. I still get tired and have to pace myself, but I can work, cycle, walk lots, do Pilates etc. I do what I can when I feel able.

    Hopefully in time it will work for you guys too. X

  • thanks Tigerlily4 and lupylass. Really appreciate your advice.


  • Hi Belee

    Sorry to read your having problems with new symptoms. I agree with Whathappened, it's important to get these new symptoms recorded at your GP. If he won't contact Rheumy then you can either do it via her secretary or ask to go on a cancellation list for an appointment . This has worked for me. Best of luck.X

  • thanks misty14, am seeing my GP this morning so hopefully she'll be able to help xxx

  • The symptoms can be changed, you need to see your doctor. A year appointment for her to monitor if no other symptoms appear.

    I have the same rash. Relax, breathing, worry free, rest and drink water also help.

    good luck to you.

  • I don't know what the norm is, but I've been seeing my rheumatologist every three months, and I have blood tests each time (about 2 weeks before the appointment or the results aren't back in time).

    I would certainly speak to the GP about your new symptoms as it might be that he/she thinks you need to be seen sooner by the rheumatologist.

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