How often do lupus patients see their hospital do... - LUPUS UK


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How often do lupus patients see their hospital doctors?

Lupus1963 profile image

Hello I am new to this site, I have ongoing issues at present with the hospital who are supposed to be treating my Lupus, very long story. Could I just ask my fellow Luppies how often they see a doctor at their hospital? I am going to contact PALS. But need to research other hospitals first. Thank You.


12 Replies

Hi lupus

I see my Consultant every six months, it varies according to how well we are, sooner if poorly. Sorry your having problems with your treatment. Hope you get it sorted thru PALS and I've helped. X

Hi Sharon, mine are every 6 month but never get much help or sympathy from my Rheumy! Never wants to listen about all the side effects that come with Lupus, leave very frustrated. 😞


Hi Sharon

Mine are, in theory, 3 monthly alternating between Rheumy nurse and consultant. The system doesn't always work and, at its worst, I have gone upwards of a year in between but currently it seems to be going ok.

Mine was supposed to be six monthly. After an enormous fuss made by my GPs I have an appointment which will make it eleven months since my last. I had to explain to the GP Registrar the other day that it will most likely just involve weighing me, BP, urine and then lots of blood tests. Cynical, moi?

Mine were every 3 to 4 month initially and now every 6 months.

Hi, I see my rhumey once a year but feel it should be more frequent, this is at the Mri. In manchester

I see my rheumatologist every 6 months. Feel it should be sooner as still haven't been diagnosed. He thinks I have seronegative lupus but won't commit to it.

Great idea to post this question!

I see rheumatology every 3 months mainly, but at least every 6 months. If I'm in urgent need, our fab lupus specialist nurse is easy to contact & she gets back with my consultant's advice &/or a clinic appt date. I feel lucky and never take this for infant onset lupus diagnosis was only recovered just over 5 years ago in my late 50s, and I've been guessing the relative frequency & regularity of my rheumatology appts has been mainly due to the complexity of getting me on an effective combined therapy treatment plan

Hope you'll let us know how things go with PALS

🍀🍀 coco

When I had a doctor at a hospital I was told it was supposed to be every six months. However I was then seen two more times in the space of three months due to advice line telling me I was ill enough for an in house appointment. Both times the doctor told me I wasnt ill enough to get the right help. so im now trying to find a better doctor.

Hi Sharon. If I'm doing well, I see my rheumatologist every 3 months. If I'm sick every month. I know it's different for everybody. My internist just retired so am looking for a new doctor. All my best wishes to you.

I see mine routinely every 3m but I can ring him and/or rheumy nurse at anytime with any problems/concerns and am either given further advice or seen sooner.

I hardly ever see my local doc. Go to hospital twice a year for illoprost infusions 6hrs every day for 5 days have to really push to have this, but it does help. See the rheumatologist twice a year if I'm lucky. No local groups meet for a chat/ coffee now in Liskeard feel very isolated

Family/ spouse no understanding

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