Hi
I'm new here! I'm having a long wait to see a rheumatologist as not yet diagnosed, but have lots of ongoing symptoms. Can you pls advise what to expect from your first appointment? Also I'm getting regular facial flushing as well as fatigue, infections and joint pains. I've attached 'dodgy' photos of my flushed face. Does this look like a malar rash? This is a mild version, much worse sometimes. Thanks
Hi claresager
Welcome to the forum, hope you find it helpful being here. Your face rash looks like mine and my advice for your first Rheumy appointment is to take all photos of rashes with you. They'll take a detailed history of symptoms, duration, family history etc and examine you. Then hopefully will do bloods and maybe order XRay or scan and come up with a diagnosis and treatment plan at next visit. He/she might give their thoughts before getting the results back , depends how they do it.
It's tough waiting a long time for these appointments I'll !. What you could do is phone the clinic and ask to be considered for a cancellation. It might bring it forward, has worked for me.
Keep posting and let us know how your appointment goes. Good luck. X
Hello and welcome Clairesager,
The only thing I would add to misty's excellent post is that I found that at the first appointment, my rheumy had his own agenda to work through. This turned out to be partly his normal way of working, but I think these first appointments are often quite stereotyped. It can be frustrating after you have waited for so long and have so much to say.
So would concentrate on making sure that you get the one or two questions that most worry you answered, rather than try and tell your whole story. x
Than you !
Hi Clairsager, Your rash looks just like mine. On my face it gets darker if I go into the sun and I also have a rash on my neck all the way around like a collar that never goes away. Being on both prednisone and hydroxycloriquine has not phased it. I had fatigue and joint pain for years with negative work up and it wasn't until the rash appeared that my ANA became positive and I have an auto antibody called anti RNP which is not necessarily indicative of lupus but because of my symptoms that was the diagnosis. I would say keep a history of all of your symptoms. With Lupus and other AI diseases there is not a clear cut set of symptoms, everyone is a little different. You have already gotten excellent suggestions on how to prepare for your appointment, I wish you the very best and welcome. Nan
yep, that's the right pattern.
To me your flush looks very like my friend's and she has Rosacea with ME.
But then I don't have Lupus, I have Sjögren's and have had a lifetime with all sorts of weird rashes on my face that get dermatologists excited and baffled or have conflicting views on. So I'm not best placed to know what a Lupus rash looks like. Some have looked at mine and said Rosacea, others Lupus and others have thought I might have telengecstasias, eczema, psoriasis or urticaria. There can be much overlapping with rheumatic diseases and conditions like ME and Fibro too and menopause and hormonal change of pregnancy also.
Rosacea is a common skin condition which flares with sunlight, chilli, alcohol and stress and can often affect people with autoimmune flares. Some with Lupus and Sjögren's have both types of facial rash.
My advice to you would be to take a bullet point A4 sheet of your most affecting symptoms with you and some print outs of photos your most severe rashes, any swollen joints and any other conditions, family and childhood history of autoimmunity, rheumatic fever, psoriasis, any symptom triggers you are aware of such as UV, spicy foods, stress, viruses, recent operations etc. The rheumatologist may or may not want to keep the list and photos but it's useful to have it as back up and to keep yourself on track.
Best of luck - please let us know how it goes once it's finally been. Waiting and uncertainty are the pits I know. X
Hi Clairesager ,
Welcome to the community forum. I hope that you find it a useful place for support and information.
In the past we have featured a couple of personal experiences from people with lupus about their first rheumatology appointments. If you would like to read these, you can find them at;
healthunlocked.com/lupusuk/...
healthunlocked.com/lupusuk/...
If you'd like any tips on preparing for your appointment, you may find our blog article here helpful too - lupusuk.org.uk/getting-the-...
If you need any more information about lupus and how it is diagnosed, you can request or download one of our free packs at lupusuk.org.uk/request-info...
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