How often do you see your rheumatologist? - LUPUS UK

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How often do you see your rheumatologist?

Sammymoat1986 profile image

How often do you guys see your rheumatologist?

45 Replies

It’s a nightmare getting into see myn I’ve had a phone appointment in the last 2 years which him despite having a bad flare where I ended up with a steroid injection and on methotrexate injections as my joints were so inflamed. Just wondered how often anyone else sees there’s and if there’s regular tests yous get done? I just feel like I only get seen when I’m at my worst

I’m in the process of being diagnosed so currently I am seeing mine every couple of weeks for results or more tests but I’m sure it will slow down soon

Hi, I see mine twice a year plus the clinical nurse specialist twice also

Hi Sammy, i last seen mine in person in jan 2020. I had a useless phone appointment last month ( they can't examine you over the phone ! ). I've been off work sick for months now with lupus flare ups and suspected fibromyalgia.The rheumatologist i spoke to said he would put in an urgent face to face appointment for me. Today i received my appointment in the post and it's for Jan 2022 !!!! If thats for urgent , i wonder what the waiting time is for non urgent.

Are you actually kidding!! I feel so sorry for you, I know I’ve been suffering with breathlessness for newrly 3 months now and I’ve only just managed to get an X-ray but I still haven’t actually seen anybody. Jan 2022! I really hope you get seen sooner than that, you need to keep on at them otherwise you will be pushed to the back I feel it’s whoever shouts the loudest gets seen x

I rung the out patients dept today and they put me through to rheumatology and it goes straight to answer phone, no one rung back, i tried 10 times and left messages. I have my consultants email so i think i will email him if i don't hear back .

maggielee profile image
maggielee in reply to Londongigi

Or chase their secretary....ml

Londongigi profile image
Londongigi in reply to maggielee

Tried that and it also goes straight to answer phone as well, i don't think any one is manning the phones.

maggielee profile image
maggielee in reply to Londongigi

What a pain.... Can't tell who is covering for whom especially during holiday time & covid time😭....ml

I normally see my rheumatologist once a year, I have had flare ups, so had telephone appointments every 6 months my next one will be face to face (again 6 months) If I have any worries they will point me in the right direction

whether it be immediate help or referral to gp etc.

The Rheumy clinic is not based at the hospital, it is at the Minerva Centre.

My bloods are done every three months now, we would either leave after that or go to the next waiting area if we want to see the nurse with any queries (pre covid)

There is also a number to call for help, consultant told me to ring the nurse if I had any flares, I'm waiting till my skin biopsy comes back.

I do hope you can get seen by someone sooner.

Every six to eight months. I had one video. Appt. in March 2020 but have been in person twice since. I see cardio every six months . I see my dermatologist, hematologist and neurologist yearly unless something happens. All have been in person since April 2020.

I have only just started on this process. So far I seem to be seeing him every few months, but that is to sort out the medication. The GP and the Rheumatologist have a shared care plan, the GP does the routine bloods. There is a phone number l can call that goes to an answer machine which they then call back within 48 hours. I have used it and it works the Rheumatology nurse called back. In most services they are trying to move to appointments when needed rather than routine so that people can be seen as needed rather than lots of pointless check ups. I agree with the comments above January is ridiculous for an urgent appointment. Hope you get one sooner

Morning, Is yr rheumatologist at a lupus centre of excellence? On my experience I would look into this. Talk to your local lupus support group too as presumably they will go to the same hospital? Same rheumatology dept/consultants.Hope that helps. Best wishes

Hi smudge j don’t think myn is I had a look on the lupus website and it’s only really Birmingham and Manchester near me who have consultants in the centre of excellence

I’m so lucky - I see mine every 6 months x

Londongigi profile image
Londongigi in reply to svfarmer

Hi SV, have you been given a date for your operation ? X

svfarmer profile image
svfarmer in reply to Londongigi

Hi Londongigi - no I was meant to be having it tomorrow but went for pre op 2 weeks ago and now have appointment to see the anaesthesist as he’s deemed me medically unfit because of my lupus so maybe having hysterectomy with just an epidural which I’m not mad about but will find out next Tuesday when I see him, thanks so much for asking xx

Londongigi profile image
Londongigi in reply to svfarmer

Good luck SV, that sounds scary x

svfarmer profile image
svfarmer in reply to Londongigi

Thankyou xx

I’m in the US and I see my rheumy every 6 months. Prior to my appt, she orders labs so we can discuss results at the appt. I’m very lucky.

It depends how well (or unwell) I am. I'm currently on 3 monthly visits. When I was first diagnosed I was on monthly visits, briefly weekly and fortnightly when very sick, but once stable I built up to 6 monthly with a nurse appointment inbetween. I've been quite poorly recently so have been on 3 monthly for the last couple of years. I know lots of her patients are on annual checks but I'm just not that fortunate yet.

All that being said, there was a mixup with my last appointment due to managerial changes so it was postponed / changed 4 times. Luckily we have a rheumatology helpline so they were able to sort it and squeeze me in, but by the time I called I was a couple months late in being seen. I didn't want to bother them but was told I should have called straight away (oops!).

Hope that helps and makes sense. All the best x

Every three months or so.

Used to be regular 6 monthly when I was at Southampton. Now in Devon its a nightmare. Last was phone consult July last year. Was told they would review in 8 months . Nothing as yet. Don't want to bother them as I'm pretty stable at moment but I do have questions gp can't answer. 2 monthly blood tests are presumably all OK

Hi Sammymoat1986. I’m in the US. I’m stillTrying to get hold of how your medical system works and how much people like it.

It sounds as if people are unhappy with

Many of the professionals and system/at

Least for rheumatology (?). When I was first

Diagnosed it was every 3 months. Then

After a year I think it’s every 6 months. With Covid, it’s been FaceTime until my

Next appointment coming up. If I had had

An emergency he made it very clear I could

Come into the office. However, I was told

By the office manager that gobs of people

Are unvaccinated. Which I think we all

Understand. I will be fully vaccinated by

The time of my appointment and I’m happy

About that. It’s important to note that as I’m on Plaquenil my eyes are checked every

3 months. With Covid it’s been a year. Not

Good!😷 Best Regards, Titters

Hi Sammy Thanks for posting this question. My wife was finally diagnosed with SLE last November - this after many "possible" lupus comments. She has been treated for RA for 15 years - we now wonder whether it was lupus all along. When my wife was given Hydroxy we were told we would be monitored to check the optimal dose was found then the GP would take over prescribing. There has been no monitoring and no appointments scheduled. We did get an appointment but only after complaining. It is very confusing -- we hear of others having "plans" well we do not have one. The only comment on the rheumy letter was "they know the number of the helpdesk" OR "please keep your arranged appointment" --(but we do not have one???)

A year ago my wife was discharged from hospital with no diagnosis i.e. the experts did not know what was wrong with her but they did know she was too weak to be admitted to ICU with the added recommendation that we complete a DNR (Do Not Resuscitate)form -- it does not get much worse that that. Since then she has gradually improved but still has a very long way to go before getting back to "normal" -- I sometimes wonder whether this is a forlorn hope.

At present we have no appointment agreed with Rheumy -- no appointment agreed with Nurses, no bloods scheduled. The GP says that Lupus is "beyond his pay grade" so we appear to be in a limbo situation with no medical back-up. When I queried the letter comment re arranged appointment comment we got a telephoned reply stating that we were on a waiting list and we would be contacted when our time comes round. In other words "shut up and wait your turn".

The good side of your question is that by hearing how others are treated I now realise that our situation could be much worse. We will just keep on muddling along ourselves despite how we are treated by the wonderful NHS we keep being told about.

Sorry for the rant. Good luck with your endeavours.

I’m so sorry to hear your wife is so poorly before I was diagnosed I just kept going back with rashes etc and was at the gp newrky every week! It was only I got weakness down my left side suspect tia! That I got seen by someone it’s terrible how we have to be nearly dying to get seen!!

Every 6 months. Have an appointment two weeks today, in person. Hoping it is my regular rheumy but last time it wasn’t. Still I feel lucky to be seen at all in these times. Xx

It used to be every 6 months but since covid l have not seen my Dr for 2 and half years they keep cancelling the appointments was suppose to have one in september but just got a letter saying it has been cancelled again until January next year l suppose l am lucky l don't have any major problems at the moment only my hair loss.

MorIlse profile image
MorIlse in reply to sharon53

Have you had a dermatologist appointment?See if you can get shots to help you.

I had alopecia and it worked with growing it back.

sharon53 profile image
sharon53 in reply to MorIlse

Yes l have l have a type of alopecia but it will never grow back again l am on a steriod shampoo and a steriod gel and i have lost my arm hair and part of my eyebrows.

MorIlse profile image
MorIlse in reply to sharon53

I lost leg and armpit hair, but those are okay. Try essential oil mix of 50%Jamaican castor oil, 20 of cedar, 20 rosemary and 10 of lavender.

Rub and Leave it overnight the night before

Washing hair. It help me.

Every 2 months right afterBeing diagnosed then every 4 months but I think imuran is causing me a flare bc my arms and legs are getting restless again. Looking forward to my appointment next month.

The sad thing is that I had to go to another country to get diagnosed. Because I don’t have any organ compromised doctors here in USA don’t want to call it lupus, it is undefined whatever.

Sleeping is very difficult, don’t have a good night sleep consistently.

Does any one on here attend the Royal Free Hospital in London ?

Melba1 profile image
Melba1 in reply to Londongigi

I do Londongigi, how are you finding them?

Sammy most, I have regular appointments and my rheumy used to be very good and see me every 6 weeks or so and weekly when very sick. But he also has ignored emails saying I’m very sick and I’ve ended up in hospital several times because of that.

Hard for them with lots of catch up at the moment but if you need an appointment sooner keep pushing because they can’t prioritise unless you let them know what’s wrong xx

Londongigi profile image
Londongigi in reply to Melba1

Hi melba1, before covid i used to see Dr Stratton or you of his team 2 or 3 times a year.I have'nt seen anyone since jan 2020.I'm off work sick with my lupus and the next ' urgent ' face to face app is jan 2022 !I cannot get to speak to anyone in rheumatology as they are not answering phones, messages or emails and they are the only ones who can change appointments, i don't know what to do.

Melba1 profile image
Melba1 in reply to Londongigi

Oh I know, lots of us have had the same problem! They just don’t realise we are trying to get through.

Have you tried dr stratton’s own email? Or Keith (he is main administrator)? But when I spoke to him he suggested PALs so could try that and say lots of people struggling to get any response from rheumatology department.

If you’re flaring you need to be seen soon - much sooner than January 2022! When I (eventually!) got hold of my rheumatologist at royal free he booked me in very quickly and they do have ‘flare’ appointments within a week, it’s just getting it through and insisting you need to see to someone quickly.

Message me if you don’t have Keith, PALs or dr stratton’s email as I have them but don’t want to post publicly.

We need to get this sorted because it’s not acceptable for a flaring lupus patient to not be able to access quick help.

The other alternative is to get your GPs to ring the registrar number (on your clinic letters) My GPs wrote a very strong letter saying they were putting me in danger not responding. I got a quick response!

Good luck xx

Londongigi profile image
Londongigi in reply to Melba1

Hi Melba1, thanks for getting back to me. I have Dr Strattons email but did'nt want to hassle him yet in case i got a reply back from rheumatology admin ( Dr Stratton is the best consultant i have seen ).PALS told me they cannot change or make appointments. Who is Keith, i've never heard of him but i would be grateful if you could give me his number.If all else fails i'll go through my GP like you did. It's nice to have someone on here who goes to the same rheumatology dept, thanks and take care.

Melba1 profile image
Melba1 in reply to Londongigi

Hello, if you have Dr Strattons email I’d definitely use that. He’ll be able to over-ride the (rubbish) non answering admin system and see you very quickly.

I emailed him about a month ago because there were so many people on a lupus Facebook group unable to get through to them.

If you just say how many times and how many different ways you’ve tried first he won’t mind. My rheumy there told me to just email him directly (which I do) because all the admin is so bad.

And when dr Stratton rings/ sees you, make sure you get a quicker follow up because he can book himself rather than go on the ‘official’ admin waiting list. My rheumy does that every time now so if flaring badly he’ll book me in as an extra even the next week.

If you’re really poorly and unable to work they will defiantly care - once you get through to the right person! Xx

Londongigi profile image
Londongigi in reply to Melba1

Hi Melba1, thanks so much for your advice, i'll email him today and keep you posted x.

I haven't seen mine for over two years, I moved to Wales in December and there are no Lupus clinics. The rheumatology dept at the local hospital said there's a years waiting list.

Hi, I see mine every 3 months, i have seen him face to face throughout the pandemic and hes maybe phoned me twice too. I always see the consultant he sees all of his patients himself no other drs, some i think see specialist nurse but i always see him and hes very thorough and spends as much time as needed with you.If I have a problem he usually calls me back himself personally often on a Sunday evening!

I've been under his care for about 11 yrs now and when he says I'll see u in 3 months he does unlike others that I know say I'll see u in a year means 18 months!!

This is an excellent post - I'm amazed by the different responses. Something like this could form the basis of a good research project

...Is there an online questionnaire somewhere gathering similar info.

Here the rheumatology nurses can only be contacted by email, the phone line is not used at the moment. My GP surgery have moved my 'current symptoms' to 'past problems' in the medical record I access online. I've asked many times for this to be corrected because of the hurt it causes, but have given up. I guess they may now see all these symptoms as being covered by rheumatology..

I'm awaiting my first NHS Rheumatology visit next week ( ok as only 8 weeks after referral).

I'm hoping this time things go smoothly.

Think at the end of the day a lot depends on individual doctors and if they are nice, or not so good..

Hi this is why I asked the question because I wanted to see how others got treated, I agree on what you said you get a nice doctor or what pressure they are under I was lucky I got diagnosed in about 6 months from the start of my obvious symptoms and I know that is quick! Myn we’re pretty obvious tho especially with rashes and really swollen lymph nodes but I know a lot of people aren’t so lucky but I still feel even with a diagnosis not many people know how to treat us

during shielding mine has rung me every 3 to 4 months, she is amazing, my face to face are usually every 4 to 6 months depending how I am, and I can ring her anytime if I need to x

I see mine after 3 months..sometimes it will b every month

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