LUPUS UK
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What was the point?

Well went for my appointment at the rhumatology nurses clinic today armed with questions about my blood results. Asked my question only to receive a reply of "Oh that isn't my expertise, I don't know anything about them. Really?? So why waste everyone's time by sending me to an appointment that is of no use? Like taking a car to the painter&decorators to be fixed. I'm also starting on Azathioprine on Monday so really wanted more information about it. Also showed them a picture of how much hair I'm losing only to be told that it "could be your condition, I don't really know."

A total waste of my time and NHS resources .

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Hmmm I suspect many Rheumatology nurses only really know about RA I’m afraid. It’s much more common than Lupus and they get trained in how to work with swollen joints and that’s all many of them understand.

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I can appreciate that but why send someone with a lupus diagnosis then? I just feel it was a complete waste of time

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Sorry - I didn’t mean to suggest that it was acceptable that they are so ignorant. It’s wrong of course! They should know about all rheumatic diseases and related drugs as part of their job and if they don’t then this is wrong and a total waste of your time and energy.

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Hi

I never thought for a minute that's what you meant, sorry if I made you feel that way.

I do agree with you that if you're at a clinic then they're should be at least some knowledge. As whisperit says, a way round this would be to ask them to relay questions to my consultant

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No it was me worrying you thought I was making light of your post! Sorry wires crossed!

At my Scottish hospital I learned (through attending an RA group meeting having previously been misdiagnosed with RA) that there is a nurse run rheumy helpline. I phoned the number they gave out and the nurse who runs it was really nice but barely knew anything about Sjögren’s or Mycophenolate. In fact she kept telling me I must have Lupus if I was taking this med as Sjögren’s is “just dry eyes and mouth and Fibro” - I wish?!

Anyway this helpline is just a gateway to access OT and physio she explained. So I’m now seeing a lovely OT - but he too clearly never gets patients with neuro problems like mine as he is Rheumatology trained only so can only help me with fatigue and strengthening my hands. This is why I said they probably only know about RA. For me the hospital is only 10 minutes drive away so not too dismayed about their very limited knowledge and support for Sjögren’s sufferers.

Did your rheum not give you an ARUK hand out on Azathioprine? I think Whisperit’s phone line suggestion sounds much better so hope that works out. I tried Azathioprine but unfortunately I was one of the 1 in 300 who got Pancreatitis from it. Hope it works well for you.

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Hi

Yes I got a hand out, just really wanted to have a chat about it and some other worrying symptoms.

I too go to a Scottish hospital and was also given the helpline number but I must admit I didn't see the point of using it as they couldn't tell me anything. Anyway, will use it tomorrow and ask them to find out information for me. Hope you get the support you need from the appropriate people

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Thanks. They seem to be passing me about a lot between specialists just now but hopefully will meet together and reach a decision about what to do with me soon. I’ve learnt the hard way that we have to be very proactive as nothing seems to just happen otherwise!

You should be able to phone your consultant’s secretary and ask them to pass on concerns directly? X

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Thanks, if no satisfaction from the helpline number I will do just that

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how infuriating. i've found the specialist rheumy nurse will relay my questions to my consultant and then ring back with his answer. its a pretty limited kind of expertise, but at least it doesnt requir e a car journey! any chance you could perhaps do the same with yours - and/or email pix of your hair or something? x

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i have this service too and find it helpful in the past. x

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Hi Mike

That's exactly what I will do tomorrow, will give them a call and enquire if they can ask the consultant. It can't do any harm and with any luck, it may have a positive result x

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Your GP can 'decipher' results for you and you can also ask for a copy. I have done both. The print out is self explanatory as any high/low scores are in bold alongside the 'normal parameter scores'

I see a rheumatologist, nephrologists, and gastroenterologist who can all check my blood results against previous ones. When my Lft (liver function tests) show high albumen my GP will increase the prednisolone dosage but I do need to make an appointment to see him unlike a simple telephone call for my Inr results

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Got an appointment with my doc this morning, will get a copy there. Thanks

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Try speaking to your Pharmacist about Azathioprine ....they know more about the drugs & are very helpful

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I agree it’s very annoying to have an appointment like that! I’m like you and want to be fully informed first although even my (good) consultant rheumy didn’t tell me anything about AZA before starting it - just a leaflet too. I ended up googling and like aged crone advised - speaking to pharmacist can elicit more info (and take less time!)

Hope you get it sorted and the drugs work well

X

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Hi

Spoke to GP this morning and she was very good. Took time to listen and reassure, has also ordered extra blood tests to make sure symptoms are not just being put down to medication side effects. Got prescription for Azathioprine but will need to wait a bit before starting them, throat red and inflamed 😣

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Oh, also meant to say, phoned the rhumatology nurses clinic and I've got an appointment with my consultant next Friday morning 😊

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How Dreadful!!!

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Where did they send you Carol? I am undiagnosed, I've been tested for ms because of my symptoms and been in half the departments of the NHS trying to get a diagnosis and getting pushed from pillar to post as well. I live near you and was attending stobhill dermatology where Lupus shows up in skin biopsy then they compare it with good tissue and say it's not lupus and gave me a diagnosis of Jessners lymphocytic infiltrate, I am in a flare at the moment but gave up with the GP and getting on with it on my own after getting a letter from Rheumatology saying my hand ultrasound was normal, just keep taking the meds and goodbye. I was on Hydroxychloroquine but I am allergic, I take Etopan for joint pain. It's the most frustrating thing when you know what you need and nobody listens :(

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Hi, I attend Monklands Hospital. After the poor appointment, I was given another one to speak to the rheumatologist and I must say the service I have received since has been excellent. The doctor is very easy to talk to and willing to wait and answer all questions. He also arranged for me to speak to the Lupus nurse specialist and she was also very good. In fact got a call today as she had contacted organisers in North Lanarkshire who run a 10 week lifestyle course for people with lifelong illnesses to see if they could help.

With regards to the Azathioprine, I have been taken off it just now as my liver enzymes were 227. Had more bloods taken and a liver scan tomorrow to ensure there's nothing else going on.

It's not all been plain sailing as I was initially dismissed for about 3 years by both the GP service and rhumatology, even tho I was so symptomatic. Was even told that blood tests have always shown me positive for scleroderma (although I have never presented with any symptoms of it ) so you would think that a diagnosis of Raynauds along with it would set off some alarms.

If you feel yourself that something isn't right then perservere as you know your own body

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That's great you've been invited to the course! (not for me with no diagnosis) hope you get something from it. Rheumatology certainly knows a lot about RA and went down that route disregarding any other symptoms, really unfair. I feel exactly the same, it doesn't take a genius to work it out and it seems to be a theme with Lupus all over the place, folk get answers when they collapse and end up in A & E :( Good luck with the course, hope you get something from it :)

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Thanks Tina.

I really do hope you get answers soon

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Thank you, you couldn't have found a better place to support you, this site is brilliant :)

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Yeah it's great, had a lot of support and learned so much. Also it's good to talk to people who fully understand. Family support is good but it's hard for them to fully comprehend the situation

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