Osteoporosis, muscle weakness etc

[skylark15]

Hi, community.

I posted about a month ago, asking about osteoporosis with lupus and wondering whether I should have a Dexa scan. I saw the usual rheumatologist last week (not the chief, unfortunately, coco!) and my GP husband came with me, thank goodness because I wouldn't have remembered all that was said. The rheumatologist recognised immediately that my walking and balance are much worse than when I was last seen, in October. My CK is still high but all the other bloods, inc Vit B12 are within normal range. My ANA Hep2 remains positive. The upshot of that lengthy appointment was referrals for xrays (hands, chest, poor chilblainy feet); an echocardiogram; a Dexa scan and respiratory function testing. I'm to be seen by the neurologist again, in the peripheral neuropathy clinic and will learn then whether I'm to have muscle and nerve biopsies. Muscle MRI and nerve conduction testing haven't shown any apparent cause for the muscle weakness and stopping the Hydroxychloroquine for 3 months didn't help, so I've restarted it because my cutaneous lupus flared so badly.

So that's where I am at the moment. A real flurry of activity, after a year of torpor and "Let's wait and see. Carry on with your exercises".

If there is no definitive diagnosis once I've had all the investigations, I've been thinking of going to one of the specialist centres; Guy's and St Thomas'; RNHRD in Bath or the clinic at UCLH. However, I've just searched on this forum and found Coppernob's post from 4 years ago and several replies. Interesting...I will Reply to Coppernob but does anyone have any update on the administrative deficiencies experienced at Tommy's? I was hoping for a centre where all the relevant specialities are in the same, dedicated unit and hopefully, someone with expertise in managing Erythromelalgia (do I hear "Fat chance!" echoing back at me from the community?") but if one has appointments put back ages or calls to specialist lupus nurses are not returned, then maybe it's better to stick with one of the local teams. Paul Howard, a question for you: What are the criteria to gain Centre of Excellence accreditation with Lupus UK?

Great to hear about the article in Medpage about Incomplete Lupus. Thanks, coco. We can all point it out now, to skeptical GPs and rheumatologists, which should help get it more widely adopted by the UK establishment. BTW, I agree, that's a rubbish name for probable or suspected lupus.

All the best to all of you.

[Barnclown]

WELL DONE skylark! Am vvvv glad of your good news 😊. It's great your husband was with you for this crucial appt. you 2 did absolutely fine with this consultant: who needs a chief when you can get results like this from your usual medic: could his familiarity with your case have helped get your points across?

I'll be following your discussion to learn from others' replies to your questions about these specialist centres

You've made my day: HURRAH

🍀😘🍀😘🍀😘 coco

[skylark15 in reply to Barnclown]

Thanks, coco. I'm still chuckling at the mental picture of you (and another forum member) hopping up and down with excitement. That's a wonderful image.

[Barnclown in reply to skylark15]

😆...and your news made me hop about too...it made my day yesterday, and was the first thing on my mind this morning. I think it's made my week!

💃🥂🌈🦄

[Paul_Howard Partner LUPUS UK]

Hi skylark15 ,

I Coppernob's post would have been back when there was a period of transition for the Louise Coote Lupus Clinic as it moved between St Thomas' and Guys Hospitals. The Louise Coote Lupus Clinic is a LUPUS UK Centre of Excellence and therefore has met the following criteria;

* Dedicated lupus clinic with 3 or more consultants covering different specialities e.g. Rheumatology, Nephrology, Dermatology, to be available to see patients, though not necessarily all on duty at the same time

* At least 1 consultant to have specialist knowledge of lupus with the others having a good ‘working knowledge’ of lupus

* ‘Open Door’ system for earlier consultation should problems arise between pre-booked appointments, patients having a ‘name’ to approach in this regard e.g. medical secretary, Specialist Nurse

* Patients having reasons for additional tests, investigations (other than the usual accepted routine clinic testing e.g. blood, urine) and medications explained to them

* Patients being informed of any possible side effects of tests, investigations and medications

* Patients being informed of results of tests and investigations as necessary

* Dedicated Specialist Lupus Nurse with other nursing staff having ‘working knowledge’ of lupus

* Helpline with message facility for general patient queries – not emergencies. This may be shared e.g. Lupus/Rheumatology/Dermatology and set up following consultation with medical staff/hospital

* Multi-disciplinary Team approach to patient care

* Combined clinics being held so that patients do not have to trek between departments/sites or attend different clinics on different days

* Easy access to clinic - either at ground level or with patient-friendly lift

* Comfortable surroundings/lighting/colours in clinic

* Privacy in changing/consultation rooms

* Toilets, preferably in department or close by, with disabled facilities/nappy changing facilities

* Up-to-date lupus information (leaflets etc) always available

* Consultants/nursing staff happy to liaise with LUPUS UK Regional Group/Contact/National Office

* On-going lupus-connected research projects within the hospital

* Organised and regular training of junior doctors and nursing staff in the management of lupus and research methodology.

* Liaison of consultants/researchers with other hospitals/clinics within UK and overseas

* Consultants/Specialist Nurse to update GPs by letter following each patient visit to clinic with patients having the option of receiving copies of these letters

Each LUPUS UK Centre of Excellence is regularly inspected by one of our Trustees to ensure that they continue to meet these standards.

[skylark15 in reply to Paul_Howard]

Wow! Paul, this is simply wonderful. It covers all the elements that people need who have lupus and its many associated conditions. Thank you for taking the time to write; it's so helpful.

Thanks too, for the information about Guys and St Thomas'.