I've been meaning to write this since I was seen at RNHRD (known locally as The Min) since I was seen in early May but life got in the way, as it tends to do.
I had taken heed of the advice given by experienced lupies on here and prepared a one page summary of my lupus and associated conditions (Raynaud's, erythromelalgia, IBS, peripheral neuropathy, autonomic dysfunction and inflammatory arthritis) and of our extensive family history of auto-immune conditions. I had also listed the increasing and puzzling weakness that has affected my leg and pelvic muscles (making walking difficult and awkward) as well as weakness in my arms and shoulders and poor balance. These symptoms are currently under investigation by the neurologist at my nearest hospital and I'm listed for muscle biopsy later this month. I declined nerve biopsy, you may not be surprised to hear.
On a separate sheet, I gave my reasons for asking for this tertiary referral (with the agreement of the rheumatologist I have been seeing); what I was hoping to achieve by being seen in a Centre of Excellence ie a fresh look at the lupus and its associated conditions; joint clinics for those associated conditions and a specialist nurse-led telephone advice line.
I finished that sheet with a list of my current medication; results of recent blood test and of other investigations and listed those that I am (still!) waiting for.
My summary was put with my medical notes for the consultant and when I was called in, she had obviously read and digested what I had written, as well as the excellent letter from my GP. The consultant, Dr K, was brisk in her manner but extremely thorough. She asked me some very pertinent questions (some of which no other clinician had asked); listened carefully to my answers as well as courteously including my husband, P, in the process. She asked what were the most troublesome current symptoms and responded helpfully to my cri du coeur about the wretched ulcerating chilblains and the erythromelalgia. What an impossible balancing act those two present: feet too cold-chilblains and ulcers: feet too hot-redness, swelling and almost unbearable burning pain. Scylla and Charybdis, anyone?
She summarised her objective interpretation and checked that she had it right. All good stuff. I was examined and again Dr K. was very systematic and thorough.
At the end of the consultation, we agreed on a plan of action that included increasing my Losartan to see if it would help prevent the formation of new chilblains and increasing the Amitriptyline, titrating it upwards from my current 10mg to help numb the night pain of vasodilation/erythromelalgia. I am to be seen in the joint rheumatology/dermatology clinic in Bath at the end of June and, hopefully on the same day, to have thermography, a cold stress test of my hands and nail-fold capillaroscopy. I will have a follow up appointment with Dr K. at RNHRD in early August.
Dr K. hoped that the appointment was of some benefit and apologised that we "didn't have time to discuss things in more detail" !! I felt that I had been listened to, that a pro-active plan was set out for me and that I had been given sufficient well-directed time, so all in all a very positive experience.
Thanks to all of you who have been so encouraging and helpful since I joined this forum 2 years ago, and supportive when I was feeling particularly rotten.
Tess
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skylark15
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Hello Skylark. It's excellent to have a positive update such as this - always good to feel that a specialist is taking everything on board properly and making potentially useful suggestions. Well done for being so well prepared too!
I have primary Sjögren's rather than Lupus, but otherwise much symptom overlap from autonomic dysfunction to Raynauds to EM/ small fibre neuropathy, IBS and inflammatory arthritis (previously diagnosed as RA).
In my case my feet regularly freeze and burn but it's really my finger tips that have suffer from chilblains. Mine seem to blister (tiny little tapioca-like blisters that feel like glass splinters) rather than ulcertate though and for this I'm glad. Then they burn and swell if they overheat - and there often seems to be no balance at all between these extremes - they can swing effortlessly between the two throughout the day. And whether they are freezing or burning they always go bright red. But if it's Raynauds they shrivel and the tips whiten, if they burn they swell up and glow like chorizo!
Nothing showed up on my nailfold capilliary test six weeks ago but I was told by my rheumy that it's still Raynaud's secondary to Sjögren's. She started me on Sildenafil (viagra) but it worsened the small fibre neuropathy in my legs and caused severe nasal congestion and my face started to swell so I stopped after 3 weeks.
Now that I've read your post I'm wondering whether to ask my GP if I can increase my dose of Losartan instead - as I take this already for hypertension. I'm desperate to get my fingertips back to a useable state once more. Typing with a stylus takes forever! Can I ask what dosage you take and whether the rise in dose makes your BP plummet unduly?
I also have weakness/ heaviness in my ankles and arms but, following normal nerve conduction studies, my neurologist says it's probably Sjögren's related fatigue / SFN/ autonomic dysfunction. I'm on Mycophenolate - which seems to be helping quite a lot at last. Are you on immunesuppression of any sort for your Lupus?
Thanks for your reply and as usual, you find humour in your description of your problems. I remember your awful super-glue finger tips and felt so much for you. And your description of the chorizo red Raynaud's finger tips makes me wince for you. However, a few weeks ago when you wrote about trying the Sildenafil and about the nasal congestion, I laughed like mad when you said "erectile tissue in my nose? Who knew?"! Fabulous, TT.
Anyway, I think it's worth asking your GP if you can increase the Losartan. I am now taking 100mg (up from 50) and I don't think my BP is too low.
I'm on Hydroxychloroqine only but Fexofenadine to damp down the itching of the skin rash and a strong steroid cream for topical use; not on my face.
It was good to be listened to and to have a proactive rheumy. I will keep you posted.
many thanks for this news: am relieved and delighted for you, and your husband 👍👍👍👍...you've been having an ultra rough time...now your care package is much more tailored and proactive..it's great this follow up appt is really soon...am especially interested in how your simultaneous raynauds & erythromelalgia treatment goes...I still haven't got my version of this miserable combination as well controlled as I'd hope I might (although I have been on 20mg amitriptyline nightly for 6 years now...so maybe my RP&EM would be even worse without that 🤷♀️).
Wishing you every best wish...and looking forward to your updates
Great to read what a good , positive appt you had at Bath. The consultant you saw trained at Bristil and was well regarded as a high flyer by her trainer!. I saw her when she was at Bristol and thought how easy to talk to she was!. Lovely to read how her career is progressing!.
You must feel very relieved that your getting further tests and a follow up with her. Also she's recommended treatment adjustment for those miserable chilblains and EM!. Do hope it helps such a tough combination!.
Good luck and let us know how you get on. Well done for being so well prepared, it helps a lot doesn't it?. X
Hi, Misty. Thanks for your reply. How interesting that you know of Dr K. She is indeed easy to talk to and we felt immediately at ease in the consultation.
I was only do well prepared because of what I'd learned on here! And the fact that Dr K. had obviously read it was a huge help.
Dr K did a lot of her training at Southmead hospital at Bristol where I used to go. The consultant she worked under said how good she was and he wanted to keep her but couldn't. I saw her once and wanted to see her more as I could ask her anything and she was so thorough!. I'm sure she's helped to change and enhance the Mim at Bath as it's changed greatly as a hospital since I was there a long time ago!. She's one of the senior doctors there now running the CTD service . Stay with it as I'm sure you'll do well, glad you liked her too!. Good luck for the tests. X
She's my Lupus doc too. I really rate her highly. I've had nothing but good experiences with her and she's trying so hard to get me on an even keel and I'm sure she'll do the same with you. Good luck! X
That's so good to hear, thank you for replying. I will be very keen to stay with Dr K. even though it means driving to Bath from Bristol. She has reviewed my muscle MRI with the Bath radiologists; initiated targeted investigations; arranged an early follow up in the joint clinic with Derm and one with herself in early August to review results of those investigations...exactly the proactive attitude that I was hoping for when I asked to be referred there. Can't say I'm exactly looking forward to the cold stress testing nor the thermography because of the RP & EM but nail fold testing should be OK. Dexa scan at some point and check CK before muscle biopsy, so all good stuff.
It's so lovely to be connected with other lupies on here. Wishing you all the best, Tess
I'm so happy to read your post. Don't know about scylla and chorybdis, but burning feet and hands are driving me mad.
It's so good to hear of a very thorough doctor. I understand why they are sometimes brusque, it's not nice, but so long as they take the time to look properly, it's ok. Well done for writing it down, and managing to say what you needed to. I had a very different experience today. I did write it down, but saw a new (interim) rheumy while mine is ill, and I didn't say enough. He didn't ask me anything, read my notes, and made me feel like a fake. I know lots of people on this site have had this experience before..I hadn't, but it is lovely to come home and read a good experience.
I really hope that the plan she set out for you is helpful and that you feel better. x
Oh,PF, I am so sorry you are having such a nightmare with what sounds like erythromelagia. My dear daughter has lent me some pads that you can either put in the freezer (bad plan with RP!) or leave in the fridge. I strap them around the burning feet when I'm woken in the night with my feet "on fire". They are helpful, giving some relief until the HD painkillers kick in.
And poor you; what a horrible experience you had at your appointment today. How dare the doctor "make you feel like a fake"??? Whilst it is still all very fresh and raw in your mind, write down the details, including how you were made to feel. At some point you may feel strong enough to talk to PALS about it. The hospital trust needs to know if "interim" doctors they employ are treating patients badly. Were you expecting to see your regular rheum? Fingers crossed she/he is better in time for your next appointment.
Thank you Tess. Feel like a fake and want to cry. I'm sure he's a great doctor, but I went to ask for help and ended up being asked if I was depressed and told that I was probably just lacking sleep and had some fibromyalgia. My diagnosis before today was first primary sjorgrens and then a sjorgrens/SLE overlap. I also have hashi's with high antibodies, anti adrenal, ANA 1.1280 and anti Ro. Almost every general symptom, but no major organ involvement. I just feel rubbish most of the time.
Anyway, it is what it is...and I was really glad to read your very positive post. Perhaps it's all in my head, and he didn't bother to ask about symptoms. My 16 year old (mid GCSE's) really wants to be a doctor. Not sure how to advise him. Maybe, only if you can try to imagine being the patient...
Thank you again for sharing such positive news. It has made me realise that I ask when I need help and don't give enough back.
This makes want to shake that doctor until his teeth rattle. 😬😬
With a set of diagnoses like that and EM too, I'm not surprised you feel rubbish, but you aren't a fake. I wish I could give you more than just a virtual hug but as you probably already know, this forum is full of people who can understand exactly what you are going through and sometimes we all need such empathy; it's like a balm to the spirit.
And getting your bright son to imagine being the patient is an excellent piece of advice. Obvs, the doctor you saw today didn't have anyone to advise him so well...Grrrrrr again.
If you can get to see your regular rheumy soon, please let us know how that goes.
I hope you have someone to support you and to give you a real hug. Meanwhile, another virtual one from me.
Thank you lovely Tess. No 'real' hugs tonight, but plenty of political TV to keep me watching. Husband in London because of work and boys at school. Honestly, none of my friends know I'm ill, and tonight, you have kept me sane..so thank you very much. Kindness is everything it's lovely to have 'virtually' met you.
Hello. So great to read your extremely positive post! Sounds like a great experience. I was in Bath at the weekend and spotted The Min. I joked with my husband about it. I had tried and tried to get an NHS referral there for a second opinion but was denied, so I ended up seeing someone privately in London in April. However, Bath would be easier all round, especially as it's closer for me. Will you keep us posted on your next appointment? It helps sharing good and bad appointments here and we all learn so much from each other. Best wishes.
I've been following your saga so I know how frustrating it's all been for you. I hope you are getting the care you need from your nearest rheumatologists now.
Good luck with the tests as they come around. It sounds like an exhausting but worthwhile appointment, I hope you get some symptom relief from the medication tweeks
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