I have a general review appointment at the scleroderma unit tomorrow afternoon – cardiology, lung function and rheumatology. I haven't been since 2020 so want to make the most of seeing the experts – any tips about what to ask them? I have limited systemic scleroderma with Reynaud's, and bronchiectasis which may be related, but no treatment at all for anything.
I feel I have loads of questions but not sure where to start… I always seem to come away from any sort of consultation feeling vaguely disssatisfied – any advice from the vast experience out there?
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volvox45
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I have started keeping a symptom journal which I write in as things come up. I also keep a list of questions. It helps me stay on track and it helps stop the potential gaslighting. I understand what you mean about leaving vaguely dissatisfied from consults. I was recently switched from one consultant to another without even so much as a discussion with regards to my thoughts on the subject, and when I turned up for his clinic I was not seen by him but by this new “important” consultants’ registrar. The consultant swanned in at the end of the clinic for about 5 minutes to tell me he was changing my diagnosis. I was never more shocked in my life. Good-luck tomorrow and let us know how you get on.
I am very intrigued as to what you mean by gaslighting? I wonder if you mean what I think… for instance, I am told my bronchiectasis is caused by acid reflux – my fault for not taking omeprazole – and they WILL NOT believe me when I say I don't have acid reflux! They just say it's "silent"! Please tell me your gaslighting experience? I suspect that some consultants are dismayed when they realise you are as intelligent as them, just with less specialised medical knowledge.
I agree with the first respondent below, start with a list of all and any random symptoms as that can be the starting point of any discussion. I am the same as you, my last appointment at the Royal Free was ages ago and my next set of appointments is now postponed until April, so I know what you mean about wanting to make the most of the chance to talk about it. You might want to ask what the longer term picture looks like for you, given they are seeing how you are doing now versus 2020 - ie any changes over that time frame might be an indicator for the next few years.
Good to sit and think in advance like you are doing, then write down all the questions you have so you can remember to raise each one. Even better if you can take a photo copy or write it out again so you can hand a copy to the consultant when you go in and say ‘this is what I want to talk about today’.
If you’re not getting treatment for anything, not even Raynauds you’re either doing very well or have been neglected!
You could try starting by thinking about what problems the conditions give you. Describe each problem separately and ask if there is anything that could help with that they could suggest.
So maybe - my fingers get very cold, white and numb when I go out / prepare food/ brush my teeth etc / it takes ten minutes to warm them up again. Is there anything you can suggest (if you aren’t on anything already they might suggest nifedipine or losartan).
For the Bronchiectsis you might describe how often you cough, for how long, how it leaves you, other impacts. If they don’t suggest anything or that it isn’t related ask if they can refer you to a lung specialist. Or ask your go. My mum has it - has been on steroid inhalers as if it is asthma, and just been referred for physio to improve breathing g techniques. For eg.
But, start with the impacts on you and problems you have, and write it down. Good if you have a close relative or friend you can do this with today, as they might spot things that you now take as ‘normal’!
Thank you LT . I don't think I'm "doing very well" by not having treatment – I have been offered medication for Reynaud's but to be honest I'm not keen on drugs that may help with symptoms but not cure the condition, and as that applies to most (all?) SSc treatments, I generally say no thank you! I am wondering about nifedipine though as I don't mind the cold fingers, it's the pain! They really hurt outdoors from October onwards… in spite of HotRox in my pockets etc.
As far as bronchiectasis goes, I can't get them to be clear about whether or not it's linked to SSc – that's my main question. I don't cough normally but I have recently had "walking pneumonia" which was clearly caused by the bronchiectasis – still on antibiotics for that and keen to avoid a repeat!
I know reflux can cause lung issues, believe it or not. I have silent reflux and it has caused some pleurisy issues for which they have given me an inhaler to use as and when something comes up. You might consider a 6 month course of omeprazole or lansoprazole and adjusting your diet to see if it helps. Gaviscon is a lifesaver.
1) how do you know you have silent reflux if you have no symptoms? 2) I have no symptoms, so how can omeprazole help? I have taken it for months to please the consultants, but it doesn't "help" because I have no reflux that I am aware of. Sorry to sound cross but I've been asking these questions for years and the only answer I get is keep taking the omeprazole even if it doesn't "help". I have a drawer-full of packets on repeat prescription.
Hi! They should be able to run tests to check for silent reflux. When I was first diagnosed I had an endoscopy to check for any oesophageal damage from reflux, and also had some other tests, including a 24-hour study (sorry I don't know what the test was called) where they put a tube up my nose and then down the back of my throat to my stomach, and left it in there for 24 hours (I could go home with this). The tube was connected to a device I had to wear, and I had to write down when I ate, and any reflux symptoms, and they would compare my notes to measurements taken by the device. It's not great to be on omeprazole long-term if you don't need it, so I'd definitely ask your drs if they can test for silent reflux to see if you definitely have it. Sometime you do have to push back a bit if you don't agree with what they're saying, but it's important because it's your health. All the best today!
Thanks, Lily. I have had a barium swallow to check my oesophagus and apparently it's normal. I was offered the "manometry" with the 24 hour tube but couldn't face it – I've had an endoscopy for another reason and it was the worst thing I've ever experienced and I will never have another! I know it's different but tube down the nose for 24 hours – no way (I'm not a wimp honest!).
Regarding meds, it's worth considering if not taking the meds could lead the symptoms to progress or cause any complications. For example, for me, taking mycophenolate has stopped the disease progressing further (or at least progressing as quickly), so it has helped protect my lungs from further damage. And taking sildenafil (and other meds) for my Raynauds helps reduce the number of finger ulcers I have, and the amount of bone loss I get in my fingers from poor oxygen to tissues. If your condition or symptoms aren't as severe then meds may not be necessary for you, but it's worth asking your dr if the meds provide any protective benefits in addition to reducing symptoms. And it's also worth weighing up quality of life improvements that could be provided by meds, for example if you find going out in the cold difficult because of the finger pain.
That's very sensible advice, Lily. I will consider the Reynaud's medication – but I don't have any ulcers, just pain… must set off for the Royal Free now!
hi - can’t comment on Royal Free as I live in Scotland and I’ve only been once privately earlier this year. But I’m seen much more frequently than you are here - every 3 months I either get phone or face to face with my rheumatologist. I saw her yesterday and always get her minus students so it’s just the two of us - which suits me well.
Yesterday’s consult was 30 minutes long but I think perhaps last of the day. We had a lot to cover so I sent her an A4 length list by email a few days in advance ie on Friday. On this I put symptoms update bullet points relating to GI problems (and related appointments and options), MSK problems - mainly wear and tear -Raynaud’s and Iloprost for limited systemic sclerosis and Sjogrens sicca and neuropathy with impact of reduced dose of Mycophenolate.
Then I put 3 questions : 1. Echocardiogram which hasn’t materialised - she says she will chase up
2. ENT audiology referral for follow up tests for hearing probs and worsening tinnitus
3. Request for referral to genetics for tests for subtypes of Ehlers Danlos/ EDS following my appointment and diagnosis at Royal Free in July. She arranged all and sent me for blood tests to check Mycophenolate toxicity levels.
We covered all and more. I know I’m lucky - can’t believe how long others here are left unreviewed and untreated. I am very proactive and always give my consultants or surgeons short lists which they usually keep to check at later date when writing their letters - which I always request copies of. They seem to like this as it keeps us on track.
Thanks. So sorry about your recent experience. What was the change of diagnosis this eminent consultant came in and pronounced if you don’t mind me asking? Can you perhaps write and request more specific info? I have to say that I’ve had similarly awful experiences here under the scleroderma team which is why it’s taken so long for me to get diagnosed with systemic sclerosis and EDS - and why I’m now under a lovely Lupus specialist- even though I don’t have Lupus. X
Hi Volvo, a while back someone suggested taking photo’s of any symptoms, such as Raynauds episodes, swelling, ulcers etc. Since my last appointment I’ve started with what I think is calcinosis on my fingers (very painful) so have taken photo’s, unfortunately when your older I find it’s just too easy for the Consultant to dismiss symptoms as just down to old age. These lumps are very different and do eventually dissolve of their own. Good advice from others which will help me too, so thanks everyone. Hope your appointment goes well for you.
PS. I realise the photo advice is too late for this appointment but something to think about for any future appointments. Good luck today and please let us know how you got on.
Thanks to all of you for your replies – I think the best general advice you give is to not only think of questions but write them down (I shall print mine out for clarity) and perhaps hand a copy to the consultant.
Yes, I'm getting all that this afternoon. Mine should be annual too but I had to chase for this one after three years! Perhaps I will consider sildenafil if it works?
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