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Lynnie

information please

8 posts in this topic

Hi Everyone,

 

Could you possibly tell me the name of the best centre/hospital and doctor who specialises in scleroderma in the U.K. please?

 

I am thinking of asking my doctor to refer me. My rheumatologist is good, but since I was diagnosed just over a year ago, she hasn't done any skin biopsies, lung function or gut tests. And from reading all your posts you've had these and I haven't! Only a abdominal ultra sound and a scan of my heart last year and that's it! Is this normal practice? Should I be investigated more?

 

Thank you.

 

Love to all

Lynn :emoticon-hug:

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Hi Lynn

 

It might be me but I should think yes that it would be appropriate that you should have some baseline tests done, especially if you were diagnosed? Leads me to ask what symptoms she actually used to diagnose you with in that case? On the other hand, if you are not having any shortness of breath for example, that may be why she didn't investigate further with a PFT (ie, lung test), no need to yet? Humnn...we'll see what the others think too.


Sending good wishes your way!

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Hi Lynn, I'm also in the UK. The baseline tests I had done were blood tests (including tests for anti-nuclear antibodies, lupus antibody, rheumatoid factor, ESR, C reactive protein,antiphospholipids, thyroid stimulating hormone), pulmonary function tests, heart echo, hand and neck x rays.

 

I now have a 6 monthly - annual pulmonary function tests and echo, and routine bloods every month (but the bloods are because I am on methotrexate).

 

I think you should have as a minimum annual pulmonary function tests and echo and blood tests at clinic visits. I have never had a skin biopsy and don't think that it is very often done in the UK. I didn't have any gut tests initially as did not have any problems. Once I started having gut symptoms I was referred to the gastro team who have done a number of tests, but think that these would not be routine unless you are having gut symptoms.

 

Lizzie

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Hello Lynn

 

The UK subforum is often recommending people to request a referral to the Royal Free Hospital in Hampstead in London. I even remember a man coming down from Scotland to be seen by the best team, headed there by Prof Chris Denton.

 

I was diagnosed with systemic scleroderma in December 2008, and also have multiple overlapping autoimmune conditions of diabetes, lupus, sarcoidosis, stage 3 kidney failure, hypothyroidism, Raynaud's, Sjogren's, dysmotility, dental bone resorbtion, sclerodactyly, glaucoma and autoimmune hepatitis. So you would think they would do every test on me, but no, they haven't. I'm glad if I don't need a gastro test, or a lung function/pah test or a skin biopsy.

 

I was referred to the Royal Free in April this year, and will be reviewed there once a year, with my main consultants keeping an eye on everything locally.

 

Its a long way for you from Hull, (my husbands family are in Grimsby, so we often drive up there from near London) but its certainly worth being seen at the Royal Free if you are at all concerned with your level of local care. Even if it just confirms they are doing all the right things locally, it puts your mind at rest.

 

Good luck, Lynn, keep in touch on here.

 

Best wishes,

 

Debs

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Hi again Lynn, I forgot to say that I think your nearest scleroderma specialist centre is Chapel Allerton at Leeds (Prof. Paul Emery)- so you could ask about being referred there if you are concerned about your local treatment.

 

Lizzie

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Hello Lynn

 

We have a list of scleroderma experts here in the UK on the Scleroderma Society website. The list includes all specialities so you'll want to pick out the rheumatologists.

 

As a patient at the Royal Free I recommend them, it's not just Prof Denton who's excellent, they all are in particular Dr Schreiber. In addition they have a team of specialist nurses that you can see when you're there or phone them when you're not. If you're a patient there they can access your records/speak to the doctors when you phone if necessary.

 

Yes you should have basic tests like lung function, ECHO, kidney function test and blood tests. Any other tests would be based on your symptoms.

 

If you have any questions about your care you owe it to yourself to do something about it.

 

Take care and keep posting.


Amanda Thorpe

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ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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:thank-you: everyone! Your advice has given me food for thought, I'll certainly see my general practitioner and discuss it with her and see where we go from there! Thanks again for the input it's appreciated.

 

Love to all

Lynn xx

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Hi Lynnie

 

I had bloodtests, echocardiogram and lung function tests when first diagnosed but didn't have another lung function done for 2 years, but as symptoms arise my rheumatologist just refers me to relevant doctor.

 

I have to say that tests are not regularly for me either.

 

Hope you can can get sorted out soon.

 

Buttons

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