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Discussion Starter #1
I'm off to see Dr Cuadrado March/April of this year and just wondered how other people have found her!

I do have SLE, but have been referred to St Thoms for some more specialist treatment to run-alongside that provided by my local specialist!

Good as well as negative comments would be welcome - BUT remember not to post the bad comments just PM them to me!

Thanks for your assistance!

"HAPPY NEW YEAR"

Lesley
 

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Discussion Starter #2
Thanks to all for the PM messages!

Hugs!

Lesley
 

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Still hoping someone out there in the Uk will have something to tell me about this specialist!

Must me quite due to the holidays!

Lesley
 

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Still looking for some info on Dr Cuadrado!

Lesley
 

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Hi lesley
where in surrey do you come from. i am not diagnosed at the mo but work at east surrey hospital, in redhill. just wondering if you know of the drs there and what they are like.
hope you are doing well.
angie:)
 

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Discussion Starter #6
angieb;531512 said:
Hi lesley
where in surrey do you come from. i am not diagnosed at the mo but work at east surrey hospital, in redhill. just wondering if you know of the drs there and what they are like.
hope you are doing well.
angie:)
Angie,

I'm under the care of West Surrey - hospitals Frimley Park and Royal Surrey, so cant be of help with info on docs at the hospital in Redhill.

You sould post on this site a thread under 'find a lupus doctor' and see what answers you get. Other than than just look up the Rhuematologist at the web address for your hospital and see what info comes up.

GOOD LUCK!!

Lesley
 

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Discussion Starter #7
Still looking for any good reviews of this lady!!! Dr Cuadrado!

Lesley
 

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I can only be myself
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I've been seeing dr cuadrado since 2004. She is lovely, and has helped me immensely, she's always running behind as she spends so long with patients. I've always found her very thorough. Don't know what i would've done without her! She's very friendly and I've always been at ease whenever I've been there.
 

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Update After Appointment

Well I visited this specialist for 1st time today!

Diagnosed in Dec 2007 at another hospital with SLE based on family history and bloods (positive anti ds dna, low c3 and c4 etc), family history and another 4 criteria plus many alternative criteria too.

Now apparently have UTCD!!!!!!!!!!!

I'm flabergasted to say the least :eek:!

But hey at least my treatment continues plus Mepacrine to be added and if in 4 weeks if no improvement longterm 7.5mg pred or some aza!!
 

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Hi Lesley,

Are you sure she said UCTD and not MCTD?

Did she say why she has come to that conclusion? Obviously she believed that your symptoms are serious enough to merit treatment (and additional treatment)...

you'll excuse my short, sharp questions but I'm a bit at a loss for words there too :)

Katharine
 

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Hi lesley,
I am shocked after such a long time living with the diagnosis already and especially with your sort of test results.

Yes I was wondering if she said MCTD and not UCTD. You muct have the anti rnp antibody for MCTD though.

Why on earth change it with your previous results?

I am not surprised that you are on shock!

Like you said though the good things is that you can continue treatment.

I am due to go on the azathioprine in the next couple of months too! Good luck with yours.

Take Care

Cassie :)
 

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Cad and Katherine,

Cant stop to say much as got to buy a bike for sons Birthday before it comes and goes and then onto a physio appt for 11am.

She definately said Undifferenciated Connective Tissue Disorder 'in full' - its me that shortened it to UCTD.

Will be back online later!
 

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:hehe: Lesley !
It just goes to show how doctors differ in their views of what symptoms fit into what disease'(diagnosis) category. Also descriptions of what constitutes a disease evolve and change as they learn more about autoimmune connective tissue disease. No doubt there will be brand new diagnoses like MCTD, SCLE and APS.

Just for interest Dr Wallace gives " A working definition of UCTD"

1. Mandatory: Inflammatory arthritis in >1 joint or Raynaud or Keratoconjunctivitis sicca [dry eyes/mouth]

2. Mandatory: positive ANA, rheumatoid factor, or anti CCP [ another test for RA]

3. Need three of the following: myalgias, autoimmune rash, serositis persistent fever without infection, adenopathy, elevated SED rate or CRP, anti phospholipid antibody

And

" Must not fulfill ACR definitions or criteria for any other rheumatic process"

According to that, one can only imagine that a lot of people get an SLE diagnosis when they shouldn't. I don't know if "autoimmune rash" means not lupus rashes, includes lupus rashes along with any others like dermatomyositis, or only lupus rashes

Having an SLE diagnosis can seriously impact getting health insurance and other insurances, so while it doesn't really matter so long as the right treatment for autoimmune CTD it does matter in other very important respects

I haven't heard of insurance problems with UCTD. If there were, the UCTD er could refer to the statistics, from one study.



After ten years, about one third of those with a UCTD diagnosis had no disorder; one third remained UCTD; one third evolved a defined rheumatic disorder.
From most to least frequent, the defined disorders were RA, Sjogren's, SLE, MCTD, scleroderma, vasculitis and inflammatory myositis.

( Source: Dubois p960)

I am glad she has a treatment plan for you! When and how are you getting the Mepacrine(US Quinacrine) ?

Cheers
Clare
 

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Hi there...
I have seen her off and on for the past couple of years..she is very thorough...and referred me else where...unlike my GP...:(....she does explain things...and will answer as much as she can with any worries or problems you have....i am seeing her in april 09...all the best...jane
 

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Discussion Starter #15
(((Clare))),

Re - Mepacrine. So lucky i got a supply at St Thoms, although specialist did say that i could take presctiption away for GP to re-write one for normal pharmacy. :hehe: I remembered you saying that people have difficulties getting this med issued!

St Thoms specialist requested that i have supply for 1x100mg mepacrine for 1 month, followed by 1x100mg every other day for hte month after - ONLY GOT SUPPLIED 30 tablets!!

Today i spoke to my local pharmacist, who checked with his supplier of specialist meds and i will be able to get supplied in packs of 100mg x 100 tablets.

Next step is to see if GP practice is willing to precribe! If not I will check with my local Immunologist to see if Frimley Park will issue them with a prescription from him. Last resort will be St Thoms will have to issue them, although not sure how that works longterm.

BUT, before I need to try them out first and hope I will not have the obscure reactions to Mepacrine :hehe: like i seem to get with many other meds. Then I hope it does help!
 

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Hi Lesley,
I'm surprised too! I thought the presence of dsDNA antibodies was pretty defining as Lupus1
Oh well...... so long as you are being treated.
 

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Hello Lesley
It sounds as if you should be ok since probably the pharmacist will accept any consultant's prescription including the local immunologist who I feel sure will write it for you.
I have always got mine direct from St Thomas' pharmacy but I'll ask my pharmacist if he would accept one from Dr D Cruz as that would be much more convenient for me than traipsing up there or using an unreliable postal service. My GP wouldn't prescribe it despite his being goodwilled and all that, on the grounds that it is not a licensed med.
Some people's GP's are apparently happy to prescribe it but Dr D Cruz told me GPs are getting more and more fussy & some patients have even had problems getting blood thinners via their GP's
I really hope it helps.

Hugs
Clare
 

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I am sending you good luck and gentle hugs.

I hope this treatment helps you.

Let us know how you get along.:wink2::wink2::wink2:
 

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Hi Lesley

Glad you appointment went well - hope things get sorted with the drugs.

Just wondering - I'm due for an appointment with Dr C next month. Would you mind to PM me how she was? I'm a bit scared of going.

Thanks

Jammy :)
 

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Lesley,
I'm a 39 year old man in London who saw Dr. C twice recently for the first time. I was diagnosed a year ago and saw a string of NHS and private rheumatologists who were all complete goons and knew nothing.

Dr. C. knows a huge amount about Lupus (see her writings with Dr. Hughes, the God of Lupus). I did feel a little 'processed' when I saw her. In and out quickly, but she put me on methotrexate immediately and it's had a fantastic affect on my wellbeing. I don't see her again for another year as she's so busy. So that's probably the only downside of seeing her.

But she's nice and relaxed. Worth a visit. Good luck. Duncan
 
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