specialist help with scleroderma

hi there

haven't ever written on blogs etc... my mum has been diagnosed as having Scleroderma - the drs are checking the extent of it, but its going to be at least 4 months till she gets a full report (it has already been two months). I'm concerned that this is going to be a long wait. i'm noticing the thickening of skin on her face, the total exhaustion she is feeling and the fact that she is having at least 4 bowel movements a day. i don't know if this is normal, but what i am noticing is that our GP doesn't appear to be too concerned or have any expertise in the area. I have noted from blogs that it is really important to get the right medication and help asap, could anyone help with what specialist care and consultants are out there within the uk.


13 Replies

  • Who is doing all these tests? The average GP knows very little about Scleroderma. Your Mum needs to be referred to one of the specialist centres. The ones I know of are in Leeds, Newcastle and Manchester, as well as London. I attend Leeds where they are brilliant. They seem to recommend as early a diagnosis as possible. I don't think 4 bowel movements are uncommon with Scleroderma, I have at least that many every day. Hope your Mum gets the appropriate treatment soon.

  • good to hear 4 bowel movements is ok - i thought it was quite a lot originally. thanks for your good wishes.

  • There is good treatment and expertise out there. The care in Nottingham is also first class in my experience. GP's do know very little though - it feels like I am giving my GP a tutorial when I go to the local practice! Has she been referred to a rheumatologist? In my experience the specialists need to drive the care with GP's just dealing with the knock on effects of medication etc.

    To be honest a lot can change in six months, it certainly did for me. If treatment is necessary the sooner you start the better.

  • she has now seen a rhuematologist but things are just so very slow as the rheumy got all the tests organised but we are still waiting for the results to come in...she is going to Royal free next month so i'm hoping things will speed up a bit by then.

  • Ah sorry to read that about your mother... my advice is similar to the others... get your mum an appointment to see Prof Denton at The Royal Free hospital in Hampstead in London asap !! as well as check out scleroderma.org.uk for info and tips. If the active part of the disease is caught soon enough, it will prevent further damgage to the tissues and organs. Have a look at my 'about me' section as well !! as well as asking Archangel Raphael to work his emerald green magic to dissolve the scleroderma trigger restoring well being !! :) x

  • Hi, sorry to hear about your mum. I have had scleoderma since 2005, it took forever to diagnose, your own GP will not be very familiar with this disease, she should insist to see a rheumatologist a.s.a.p. and if possible ask to be referred to a specialist clinic. I am under professor Dentons team at the Royal Free and they are super efficient. Depending on what type of scleroderma she has, the symptoms will be different for everybody and thus progress at different rates. Once the damage is done there is nothing you can do about it, so early treatment is necessary to prevent further damage. Hope she gets the right treatment.

  • thats what i thought - i'm just hoping that the medicines now prevent further damage, but they seem to be taking some time to kick in...

  • Hi Annie,

    How do you get the referral to the Royal Free in London? My GP referred me to a local rheumatologist. After been waiting for 16weeks I had my appointment today and he said I might have limited scleroderma but he is not sure. He wants to refer me to a scleroderma specialists in Coventry, which means I will have to wait and I am worried that he might not be an expert in scleroderma. Can I ask my GP to refer me to the specialist centre in London?

    Many thanks.

  • Hi there. I have to concur with everyone else. GP's do have no knowledge or very little of Scleroderma . if you have got as far as a rheumatologist who is going to refer you on, I'm sure you're within your rights to request to go to what hospital you want. I was lucky Royal Free was my nearest, and their care and understanding is superb. You can't lose anything by asking. Wishing you all the best

  • Hi Dizzy Angel - Your Mum is very fortunate in having a daughter such as yourself who is being really pro active in helping find sources which can help her. As everyone else says the way forward is through a specialist who will monitor your Mum and ensure she goes through a barrage of tests to see where exactly the scleroderma is and what treatment she needs. The GP is not the person she needs as a Rheumatologist will co-ordinate everything for her and then she will be on a regular programme of visits to the hospital. I came across my scleroderma by accident as I was so fed up with mysterious things happening to my body including ulcerated toes I decided to go privately to a skin specialist who could not diagnose what was wrong with my skin but said you have CREST - so thats how my ball got rolling and I find that the Dr Lanyon at Queens Medical Centre to be brilliant. I think it is a question of going armed with information to the GP and being assertive about asking for a referral. Good luck and keep us posted.

  • I'm under Dr Lanyon too - he's fantastic. In fact the whole team are brilliant. I'd be lost without them and my regular trips to the Treatment Centre.

  • Thanks for your kind words.my mum is an amazing lady who has spent most her life devoted to her family and others -without a doubt I'm the fortunate one ;)

  • thank you so much for all your information. It has been a bit of a overwhelming experience - mainly because we don't know what type of scleroderma she has yet - until the heart and lung results come back...she is on a whole host of medicines including quinine which really doesn't suit her, causing headaches etc (btw anyone know of any alternatives to this medication? i can't believe there isn't). She has been given an appointment at Royal Free so i will let her know about Prof. Denton. Also, she is quite into alternative therapies and has been using MSM has anyone else tried this and if so what do you think?

    Also, we read a few articles about low oxalate diets helping with scleroderma - we thought we would try this out, but have found contradictory information about what foods are low oxalate and I was keen to know if anyone out here has tried any of this?

    Once again, thanks again for all your help. from reading about this condition, i have become aware of how painful and exhausting it is to suffer from this. My mum tries not to worry the rest of us, so doesn't say much so it can be hard to get the full picture - especially as she looks pretty ok. i can see the changes in her but she can get a hard time from my dad who always says she needs to exercise more - but to fair i don't think he really understands what she is going through. having support groups like this helps more than i can express.

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