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louiserawlings01

My 19yr old daughter has Systemic Sclerosis and wants to stop treatment

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Hi everyone,

 

Update on my daughter. She has continued with her MMF and being slowly reduced from steroids, now down to 8mgs but the withdrawal symptoms are getting worse. We have requested to be referred to the Royal Free Clinic; our consultant has agreed to do this and has set the wheels in motion, but does not feel that the Royal Free will do anything any different from her. I explained that we are not looking for a miracle cure (although how nice would that be), just another set of expertise. Our consultant said that they all have the same information as it is all shared and they do not have anything different her. She said we will not see a specialist consultant just a registrar, She said that the Royal Free is really for sufferers who do not have a consultant who knows about sclero. She does not say she is a specialist in sclero but knows a lot about it, and still learning. I suspect my daughter is her only patient with systemic sclerosis as she appeared to have read up a bit more on it when we went to see her last week. Me thinks she has been doing some homework... It is a very complex disease and therefore not many that specialise entirely in its field, this I know. I think she is just making sure we are not going to London expecting too high an expectation and for them to say someone got it wrong and here is a tablet to cure. We are not that stupid! :emoticon-dont-know:

 

She has a gastro appointment for Monday as she is having some reflux problems but once again it is a fight to get her there. She said that so what if it is there, what can they do? Why suffer a endoscopy to be told it is there when there is nothing they can do that they are not already doing. Arggggggggggg........

 

We were also told by our consultant that her fibrosis if that is how you spell it, is irreversable and extensive due to the fact that the diagnosis was too late, if they had caught it early when she was symptomatic back in the July - December 2010, the MMF and steroids would of had a better effect...... Unfortunately our general practitioner who I am sure has some type of asbergers who cannot look you in the eye and has no expression or emotion, just fobed us off for months with it's just a virus or bug or something... Okay sorry rant over, so angry that our general practitioner did not catch this earlier, then her sclero may not have developed into diffuse systemic and just been limited.

 

Just waiting now on our appointment with London (hope its not during the olympics) and our light treatment appointment with Dundee.....

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Hi Louise - Limited Scleroderma and diffuse Scleroderma are 2 different types, they tend to have different antibody types, so your general practitioner would not have saved her from developing diffuse Scleroderma, your daughter already had it. Most general practitioner's would not know what the symptoms of Scleroderma are, it took me 10 years to get a diagnosis. Diffuse Scleroderma is however the worst type. From what I understand if you get a referral to the Royal Free your daughter will be under the best possible care there is, so I think its very positive that you have this referral (I would love to be seen there personally, my rheumatologist isn't brill) Good Luck!

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Hi Louise,

 

Inkedup is absolutely right; Diffuse and Limited are different types of Systemic Scleroderma. However, it's certainly correct that the sooner the fibrosis can be treated the better the outcome can be. I'm a patient at The Royal Free myself so can safely say that consultations there are not just for patients who don't have a local Sclero expert to deal with them. My local consultant thankfully did not have an large ego and when she realised she did not have the expertise to deal with Scleroderma she referred me to a lung consultant who is one of the top lung specialists in the UK. He has seen many cases of Interstitial Lung Disease caused by Scleroderma, so was able to diagnose me after many extensive tests; nevertheless I was still referred by him to The Royal Free for an overview. I only go there once a year now and sometimes see a registrar and sometimes one of the senior consultants. It certainly will be beneficial for your daughter to go to The Royal Free, so please don't allow your consultant to tell you otherwise!! ;)

 

I do hope your daughter gets on well with her gastro appointment on Monday (providing you can get her to attend!! ;)) and that you very soon receive the details of your appointment at The Royal Free.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Louise,

 

I was disappointed to read that your daughter has said "why suffer an endoscopy". From my point of view that is one of the easiest things to go through. I always choose to be asleep through it and find it absolutely no hassle at all. In fact I look forward to hearing what has been found each time. For me, it is better to know for sure than be wondering.

 

Has she had one before?

 

I wrote to you before about my Scleroderma starting when I was quite young, and the fact that I had no sort of diagnosis until 2003. I am now 68 and if you have been reading the posts you will see that I have had a pretty rugged time in hospital since early February with issues related to the state of my digestive tract. I like to imagine that if I had been fortunate enough to get a diagnosis many years ago, then maybe things would not be so bad now - wishful thinking I know. Please tell Cheryl that, to try to encourage her to do everything she possibly can now to help for the future.

 

You will see that I was prescribed liquid gaviscon earlier this week to ease a Gastritis attack and in spite of my scepticism it worked and I have had two good nights sleep!!! Don't dismiss anything which might help.

 

Be thankful you have a referral to the Royal Free and take no notice of bruised egos on the way.

 

Best wishes for your upcoming appointments.

 

Warm hugs from the upside down side of the world

JudyT

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Hello Louise

 

You suffer an endoscopy to try and prevent further damage, plain and simple. They need to know exactly what is going on so they can treat it most effectively and make sure the gastro people consult the Royal Free before they do any treating. The Royal Free should now become the centre for your daughter's scleroderma care with the general practitioner and gastro doctor marching to the beat of their drum not the other way around.

 

It is really important to take gastrointestinal issues seriously, I have a friend with complete gastric failure, she is on TPN (total parenteral feeding) as her entire gastrointestinal tract has been scarred by scleroderma and doesn't work. I'm not saying that is going to happen to your daughter obviously but that's how bad it can get for some people.

 

I wonder how much ego was involved in what your general practitioner said because the Royal Free is a centre of excellence with the UK's leading scleroderma experts situated their and your daughter will not just see a registrar but even if she did that registrar would know more about scleroderma than your general practitioner and will refer to Prof Denton as necessary. Based on what people have told me when referred to the Royal Free first time round is that they all see Prof Denton, even if he only comes in at the end of the consultation. Even if the Royal Free change nothing you know that your daughter has literally received the best care available in this country.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Louise - Limited Scleroderma and diffuse Scleroderma are 2 different types, they tend to have different antibody types, so your general practitioner would not have saved her from developing diffuse Scleroderma, your daughter already had it. Most general practitioner's would not know what the symptoms of Scleroderma are, it took me 10 years to get a diagnosis. Diffuse Scleroderma is however the worst type. From what I understand if you get a referral to the Royal Free your daughter will be under the best possible care there is, so I think its very positive that you have this referral (I would love to be seen there personally, my rheumatologist isn't brill) Good Luck!

 

Ah I see what you mean, my understanding was that my daughters scleroderma has progressed through to diffuse, not that that is what she had to start with, however I am positive that the skin involvement would not be as severe if caught earlier.... It's such a pity that its a lottery who you get when you make your appointment with your general practitioner.. My actual general practitioner is a skin specialist but since he misdiagnosed my mother 7 years ago and she died, I never went back to him, he may have realised that something more than a virus was going on.......

 

Hi Louise,

 

Inkedup is absolutely right; Diffuse and Limited are different types of Systemic Scleroderma. However, it's certainly correct that the sooner the fibrosis can be treated the better the outcome can be. I'm a patient at The Royal Free myself so can safely say that consultations there are not just for patients who don't have a local Sclero expert to deal with them. My local consultant thankfully did not have an large ego and when she realised she did not have the expertise to deal with Scleroderma she referred me to a lung consultant who is one of the top lung specialists in the UK. He has seen many cases of Interstitial Lung Disease caused by Scleroderma, so was able to diagnose me after many extensive tests; nevertheless I was still referred by him to The Royal Free for an overview. I only go there once a year now and sometimes see a registrar and sometimes one of the senior consultants. It certainly will be beneficial for your daughter to go to The Royal Free, so please don't allow your consultant to tell you otherwise!! ;)

 

I do hope your daughter gets on well with her gastro appointment on Monday (providing you can get her to attend!! ;)) and that you very soon receive the details of your appointment at The Royal Free.

 

Kind regards,

 

Thanks, I'm feeling a little bit better now about our appointment to London; hopefully just another set of eyes on her condition and bit more advice on how she can help herself to have a better life.. I sometimes think our GPs and consultants are relying on us to google everything :lol: ....

 

Hello Louise,

 

I was disappointed to read that your daughter has said "why suffer an endoscopy". From my point of view that is one of the easiest things to go through. I always choose to be asleep through it and find it absolutely no hassle at all. In fact I look forward to hearing what has been found each time. For me, it is better to know for sure than be wondering.

 

Has she had one before?

 

I wrote to you before about my Scleroderma starting when I was quite young, and the fact that I had no sort of diagnosis until 2003. I am now 68 and if you have been reading the posts you will see that I have had a pretty rugged time in hospital since early February with issues related to the state of my digestive tract. I like to imagine that if I had been fortunate enough to get a diagnosis many years ago, then maybe things would not be so bad now - wishful thinking I know. Please tell Cheryl that, to try to encourage her to do everything she possibly can now to help for the future.

 

You will see that I was prescribed liquid gaviscon earlier this week to ease a Gastritis attack and in spite of my scepticism it worked and I have had two good nights sleep!!! Don't dismiss anything which might help.

 

Be thankful you have a referral to the Royal Free and take no notice of bruised egos on the way.

 

Best wishes for your upcoming appointments.

 

Warm hugs from the upside down side of the world

JudyT

 

I agree, I do like our consultant but she did look a little miffed when we wanted to be referred.. Possible ego problem I hope not, as she is our consultant. I have had an endoscopy as I have had reflux problems all my life, I was only sedated and found it perfectly okay to deal with, the barium meal was much worse. She had a colonoscopy about 2 years ago as she was bleeding and she was in there with people who were choking on their endoscopy so she is freeked out by it. I have told her she can be put to sleep but because of her fear of needles even now she does not want that either, poor wee thing has a blood test every month that she manages but it's the drip in the back of the hand that totally throws her. I hve told her she can have gas but she is having none of it and does not believe me. I am so looking forward to London and hope they can just help her to carry on having as productive a life as she can have.

 

Hello Louise

 

You suffer an endoscopy to try and prevent further damage, plain and simple. They need to know exactly what is going on so they can treat it most effectively and make sure the gastro people consult the Royal Free before they do any treating. The Royal Free should now become the centre for your daughter's scleroderma care with the general practitioner and gastro doctor marching to the beat of their drum not the other way around.

 

It is really important to take gastrointestinal issues seriously, I have a friend with complete gastric failure, she is on TPN (total parenteral feeding) as her entire gastrointestinal tract has been scarred by scleroderma and doesn't work. I'm not saying that is going to happen to your daughter obviously but that's how bad it can get for some people.

 

I wonder how much ego was involved in what your general practitioner said because the Royal Free is a centre of excellence with the UK's leading scleroderma experts situated their and your daughter will not just see a registrar but even if she did that registrar would know more about scleroderma than your general practitioner and will refer to Prof Denton as necessary. Based on what people have told me when referred to the Royal Free first time round is that they all see Prof Denton, even if he only comes in at the end of the consultation. Even if the Royal Free change nothing you know that your daughter has literally received the best care available in this country.

 

Take care and keep posting.

 

Thanks Amanda I will let her know; she just does not want anything else wrong, but prevention is best...... Will she still see her Edinburgh consultant once she goes to London as well? London is so far away we won't be able to just pop down 3-4 times a year unless she goes with her boyfriend and uses it as a wee weekend away.

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Hi Louise,

 

Your daughter will probably still see her consultant in Edinburgh as well. I have three different consultants (one local lung, one specialist lung and one rheumatologist) and now that I'm so much improved I see each one once a year with a six month gap between lung consultants, if you get my meaning. My local lung consultant is excellent but I do like to have the umbrella of The Royal Brompton over me to oversee my lung function and The Royal Free to oversee the general Scleroderma symptoms.

 

At the risk of sounding boring (an unattractive trait I do tend to have!! ;) :lol:) I have been incredibly fortunate with my treatment!


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Louise

 

Yes your daughter can keep her consultant but make sure they liaise with the Royal Free as you want them to be involved at all times, well I would anyway. You already know how wrong it can go when people don't know what they're doing.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Louise,

 

Thinking about the needle phobia, I wonder if you could discuss this issue with someone who knows the ins and outs. I have been given oral sedaitves before to relax one prior to some of these stressful procedures. I just wonder if they would consider an oral sedative or gas prior to inserting the lure in her hand or arm. Actually, I find the back of the hand the least comfortable and am much happier with it in my elbow.

 

I have a granddaughter who is needle phobic but my daughter found a wonderful dentist who solved all the problems,don't ask me exactly how, but it can be done.

 

I am appalled to read that your daughter was aware of other patients problems when she was having a colonoscopy. I have NEVER EVER been aware of what was happening with anybody else who was there at the same time as me. I have had both private (I paid) and public (I didn't pay) procedures and in every case I was in a theatre on my own (with the staff around of course). The more I think about being aware of what was happening to anybody else the more barbaric it seems.

 

Let's hope things get better in the future.

 

Best wishes

JudyT

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