OK, so lupus suspected and a +ve ANA last summer. APS identified at same time and treatment started for that last November. Kidneys are unhappy and I seem to be getting more unwell as the months pass. A biopsy may be required as I am passing blood rather than urine. Raynauds, osteoarthritis and possible LN. And now I seem to be being told I have vasculitis. From what I can see this is a really uncommon thing that can go along with SLE, which I am still waiting for treatment (or even acknowledgement that I have it!).
Why are the consultants insisting on piling diagnosies on me but offering no treatments, and completely ignoring what seems to me to be the primary cause of my illnesses? I have 8 of the 11 criteria, and dont know what to do to get looked after properly, which is completely depressing me.
Sorry to be self pitying. From what I can make out, no one wants to take responsibility for my overall care. Also for these conditions the treatments seem to be broadly the same. I no longer care what is making me ill, I just need to stop deteriorating.
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Bonnie39
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Hi Paul - thanks for asking. I am under a neurologist (who started investigating what was wrong with me), a thrombotologist for the APS (who confirmed livedo and Raynauds), have seen a urologist (CT & cystoscopy did not give reason for the bleeds in my urine), was seen by a nephrologist who has now forwarded me to a vasculitis clinic, and a rheumatologist (at last!). Each consultant seems eager to get a lot of bloodwork drawn up, order more tests and either pass me on to someone else or see me again in another 6 months. I am so fed up with being passed around by people. I do ask what treatment they can offer me but I am always told to wait until the next tests or the next person sees me.
The thrombotologist has put me on lifelong warfarin, so I am glad at least this is being taken care of a little. But that is all the treatment I am getting so far.
I finally did get seen at St Thomas', but the consultant left the clinic and discharged me (as well as telling me that there was nothing autoiummune wrong with me and to stop taking warfarin!).
I have had three +ve ANA results in the last year and a lot of other markers in my blood. And I am sick of being left to get on with things.
Any advice or tips on what to do would be very gratefuly received!
It is good that you will finally be seeing a rheumatologist. That is who you need to see really to get a diagnosis. Make sure you have a list of your symptoms, any photos of visible symptoms (if you've got any) and a few questions (no more than 3-5) to ask the consultant. When will you be seeing them?
Hi Bonnie39,
I think you need to be seen at a multi disciplinary vasculitis clinic. There are a few in England and Scotland, they are much more holistic in their approach and are used to seeing complex problems. The clinic at Addenbrookes Hospital in Cambridge is reputed to be the best and is ran by a Dr David Jayne who is a nephrologist and also has a Lupus Clinic. They are used to seeing second opinions. If you go to the Vasculitis Uk site in health unlocked or phone their helpline it is very helpful.
I was referred for a second opinion to the multi disciplinary clinic in Aberdeen as I was struggling for a diagnosis. It now looks like my illness is more connective tissue but they have liaised with my local Rheumy over treatments and I am due to start mycophenolate.
A multi disciplinary clinic will co ordinate your treatment and bring in appropriate specialties as required.
Good luck, now you have possible renal involvement it's imperative that you receive appropriate advice and treatment.
Thanks Keyes. Actually at my first (and last) nephrology appointment the doctor moved me to a rheumy/vasculitis clinic, so funny you should mention that! That appointment is in just over a month. I am hoping they get me going on something as I feel like I am sinking fast!
As your so poorly could you see if you could go to the vasculitis clinic earlier by trying for a cancellation? I've done this and it usually works. I hope you are sorted very soon as you need it!. Good luckX
Hi, thanks Misty. I asked when the appointment was booked and they told me that cancellations basically never happen! But I will phone them weekly on the off-chance!
Oh wow! I just looked up the clinic I finally have a referral to at my local hospital and it sounds perfect!
"Patients with multisystem auto-immune disease, and often but not always, with kidney involvement (typically, but not exclusively, anti-neutrophil cytoplasmic antibody associated vasculitis and lupus or systemic lupus erythematosus), are cared for in this clinic."
That's great Bonnie39, it sounds exactly what is required. I hope you can get answers and treatment now.
Multi disciplinary clinics are definitely the way forward for complex auto immune problems, I was seeing 3 specialists at one point, all of who were looking at their particular " bit " but weren't considering my symptoms as a whole.
Does anyone know of a wonderful multi discipline clinic in London ? I am floating between many consultants and like you need a ring master to co ordinate me! I know have SLE,Hashis, Sjogrens,Hughes, fibro, connective tissue ,fowlers syndrome..multiple allergys food and meds plus a prolapsed bowel and bladder......and now.... Lichen Planus of vulva ( treated by dermatologist) and vagina and euretha and anus..which is and Uro ,neuro,gynae ( each will only look at there specialist bits and won't cross the line ,this consultant keeps saying the derby will treat you ...but the derby won't!) and another referral to ENT as I probably have Lichen planus of the throat and ear canal....( not acid reflux as diagnosed by last ENT) ... I need a consultant to look at my whole body and try to fathom out out what treatment might stop all these new things appearing...
I was given Plaquinil at St Thomas's when first diagnosed a With SLE 4years ago ..but couldn't tolerate it. I have been on prednisalone on different occasions it comes out of the emergency bag as and when needed....
Any advice would be appreciated
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Hi Donna,
There is a multi disciplinary vasculitis clinic at the Hammersmith in London headed up by Prof Pusey. I don't know if they see connective tissue disorders as well. Worth asking though.
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