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


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#1 louiserawlings01

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Posted 29 November 2011 - 04:42 AM

Hi everyone I am new to this forum and not sure how all this works... My daughter has SSc she was diagnosed in March of this year. She is on steroids 20mg being reduced slowly as we speak and MMF. My problem is is that she has been refered for light treatment for her skin which is very bad especially on her foot, ankle and hand, at Nine Wells hospital in Dundee but has been informed that the risks of skin cancer are higher when on meds. She has decided to come off the meds in January to accommodate the light treatment against her consultant's advice. As far as my daughter is concerned the tablets are not making her better and the effects of the drugs outweigh the effects of the condition. I am so worried on the long term effects this could have on her. I know she has not come to terms with her illness as she refuses to associate herself with any society or group. Any advice out there for me

#2 Amanda Thorpe

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Posted 29 November 2011 - 06:46 AM

Hello Louise

Welcome to the forums although I am sorry it's because your daughter has scleroderma, I am assuming localised?

The Scleroderma Society UK has leaflets available to read online or download, in particular localised scleroderma that states:

"Light therapy such as PUVA (using a psoralen medicine followed by ultraviolet A light) may also be used as a treatment in generalised morphea. UVA1 is another form of light therapy but it is not widely available and its value in the treatment of morphea is still not established."

The nature of scleroderma is that it can wax and wane over a period of years and can improve even without treatment. The good news is that the localised form of the disease won't lessen your daughter's lifespan.

I guess only your daughter can really decide which treatment she prefers. If at all possible try and encourage her onto these forums because talking to someone else with the same disease as you makes a tremendous difference to how you feel about your illness.

I hope this helps, take care and keep posting.
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#3 Joelf

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Posted 29 November 2011 - 11:30 AM

Hi Louise,

Welcome to these helpful and informative forums!

I'm very sorry to hear that your daughter has been diagnosed with Scleroderma and I can understand how distressed she must be feeling. We do have a very useful link on Emotional Adjustment which I hope she'll find helpful.

I can see that your daughter could be worried about the affect of light treatment when she's taking strong medication. I'm taking a similar immune suppressant (Azathioprine) and was also told to be extremely careful about sun exposure. Obviously only your daughter can decide which course of treatment she wants to pursue and it's very difficult for her to be given such conflicting advice by her specialists. Perhaps she could go back to her consultant and explain the position and how concerned she is and ask if he/she can suggest any alternative to stopping the medication completely?

As Amanda has suggested, perhaps your daughter could join these forums herself and she will find a wealth of help and support amongst our members who do understand what she is going through.

Kind regards,

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#4 lizzie

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Posted 29 November 2011 - 01:39 PM

HI Louise,

As a parent it is hard when adult children have a serious illness, as although we can give our opinion, they, quite rightly of course, can choose their own course of action. In some ways it is easier when they are minors because the decision about treatment is in our hands. I really do empathise. My son was diagnosed with rapidly progressing renal failure when he was much the same age as your daughter . He was on steroids and MMF. He hated the steroids because he developed acne, so discontinued although he did remain on the MMF ( although to be honest I'm unsure that he took the tablets as prescribed). He would not talk about his condition with us (even though he had been told it was more than likely that he would require dialysis within 6 months) and I know that he did not even tell any of his friends. I suggested that he might like to join a support group, but was adamant that he did not want to. Over time he has come to terms with his illness and actually takes his medication regularly, rings me up to tell me his blood results and what was said, after each clinic visit. I think your daughter just needs time to come to terms with things. I know it took me some time when I was diagnosed with SSc.

As Jo says, the conflicting advice she has received from the consultants is less than helpful, and she really needs to discuss it further with her doctors.
(PS. the MMF worked wonders for my son - although he still has chronic renal failure , he has not yet needed to start dialysis and in fact his renal function has improved)
Lizzie

#5 louiserawlings01

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Posted 29 November 2011 - 04:22 PM

Hello Louise

Welcome to the forums although I am sorry it's because your daughter has scleroderma, I am assuming localised?

The Scleroderma Society UK has leaflets available to read online or download, in particular localised scleroderma that states:

"Light therapy such as PUVA (using a psoralen medicine followed by ultraviolet A light) may also be used as a treatment in generalised morphea. UVA1 is another form of light therapy but it is not widely available and its value in the treatment of morphea is still not established."

The nature of scleroderma is that it can wax and wane over a period of years and can improve even without treatment. The good news is that the localised form of the disease won't lessen your daughter's lifespan.

I guess only your daughter can really decide which treatment she prefers. If at all possible try and encourage her onto these forums because talking to someone else with the same disease as you makes a tremendous difference to how you feel about your illness.

I hope this helps, take care and keep posting.

Hi Amanda

I cannot believe I am saying this but, I wish it was localised, the effects are on 80% of her body, more severe on her left side of her body, her consultant has said that she has diffuse systemic sclerosis and the medication is to try to prevent the disease from attacking her internal organs. I was sure I read that only if the disease has reached the internal organs can it then be called Systemic Sclerosis or am I mistaken. From what I have read so far, this disease has a different path for every patient and that no two people are the same, so as you can imagine I am so usure as to what is going now. Her dermatologist has refered her for UVA1 in Ninewells hospital Dundee, my daughter is hoping that this will make everything alright, very hard to tell a 19 year old that it could be a shot in the dark as it is all still very experimental.

#6 louiserawlings01

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Posted 29 November 2011 - 04:34 PM

HI Louise,

As a parent it is hard when adult children have a serious illness, as although we can give our opinion, they, quite rightly of course, can choose their own course of action. In some ways it is easier when they are minors because the decision about treatment is in our hands . I really do empathise. My son was diagnosed with rapidly progressing renal failure when he was much the same age as your daughter . He was on steroids and MMF. He hated the steroids because he developed acne, so discontinued although he did remain on the MMF ( although to be honest I'm unsure that he took the tablets as prescribed). He would not talk about his condition with us (even though he had been told it was more than likely that he would require dialysis within 6 months) and I know that he did not even tell any of his friends. I suggested that he might like to join a support group, but was adamant that he did not want to. Overtime he has come to terms with his illness and actually takes his medication regularly, rings me up to tell me his blood results and what was said, after each clinic visit. I think your daughter just needs time to come to terms with things. I know it took me some time when I was diagnosed with Ssc.
As Jo says, the conflicting advice she has received from the consultants is less than helpful, and she really needs to discuss it further with her doctors.
(PS. the MMF worked wonders for my son - although he still has chronic renal failure , he has not yet needed to start dialysis and in fact his renal function has improved)
Lizzie

Hi lizzi

Thank you for that, my heart sank when I read your story about your son as I am so in tune with you, I can still influence my daughter to an extent as she is still at home, I so dread the day she is out there on her own as I know she is not happy taking so many tablets. She is more upset about her appearance than what this disease is doing to her insides. She also has acne now and is very bloated. A friend has a baby shop and were visiting her for a little blether and a woman came in and tutted at my daughter, she is very young for her age she only looks about 15, and the woman assumed she was pregnant as she is so bloated, she was totally devastated and burst into tears, I so wanted to rant at this woman but my daughter needed me. She is a hairdresser and finding it very difficult with her drastic change in appearance. Either I was not listening or we were not told exactly what the taking of steroids is for, I know the MMF is a suppressant which she needs to be on but not sure why she is on the steroids. Pity the dermatologist and the consultant don't talk perhaps we would not be in this position.

#7 louiserawlings01

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Posted 29 November 2011 - 05:01 PM

Hello Louise

Welcome to the forums although I am sorry it's because your daughter has scleroderma, I am assuming localised?

The Scleroderma Society UK has leaflets available to read online or download, in particular localised scleroderma that states:

"Light therapy such as PUVA (using a psoralen medicine followed by ultraviolet A light) may also be used as a treatment in generalised morphea. UVA1 is another form of light therapy but it is not widely available and its value in the treatment of morphea is still not established."

The nature of scleroderma is that it can wax and wane over a period of years and can improve even without treatment. The good news is that the localised form of the disease won't lessen your daughter's lifespan.

I guess only your daughter can really decide which treatment she prefers. If at all possible try and encourage her onto these forums because talking to someone else with the same disease as you makes a tremendous difference to how you feel about your illness.

I hope this helps, take care and keep posting.

Hi Amanda

In my rush to reply to your comment I did not consult the information from the hospital, they started by saying she has a "connective tissue disorder" namely scleroderma, with a autoimmune disorder namely systemic sclerosis, they were also surprised that she does not suffer from Raynaud's phenomenon, although her nails can go blue/purple in the cold. She had a skin biopsy that concluded she has systemic scleroderma. With so many names running around I am unsure what it is that she is suffering from. We have an appointment on 19th of December and I want to go in there a little more knowledgable than previously.

#8 Amanda Thorpe

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Posted 29 November 2011 - 06:00 PM

Hello Louise

My apologies, there are two main types of scleroderma localised, just affects skin, underlying tissues, joins with no internal organ involvement and systemic which can involve the internal organs as well. I thought you were referring to localised, as in the form that just effects the skin.

As your daughter has systemic scleroderma I suggest that she be referred to a scleroderma expert and I say that knowing you'll have to travel a long way. The list I have given you includes various specialties so just pick out the rheumatologists and I recommend the Royal Free London as they are a centre of excellence for scleroderma, as a patient there myself I can attest to their excellence. I have both the localised and systemic forms of scleroderma.

Please also see our warning about use of steriods in systemic scleroderma, they can precipitate a renal crisis in a person with systemic scleroderma.

MMF is a standard treatment for systemic scleroderma and I assume that your daughter will soon be having an ECHO, lung function test and maybe other tests as well.

You may find it helpful to read or download from the Scleroderma Society website Understanding and Managing Scleroderma which explains the difference between the types of scleroderma.

Please also see types of scleroderma and Raynaud's, if your daughter's fingers are changing colour in response to stress or cold, that sounds Raynaud's like to me but I am just a layperson!

Take care and keep posting.
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#9 judyt

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Posted 30 November 2011 - 03:49 AM

Hello Louise,
I am so sorry to hear that your daughter has systemic scleroderma at only 19. As far as I know for sure my disease started with Raynauds when I was 22 in 1966. I say as far as I know, because there were two incidents when I was younger which I think might have been the real starting point.

I am now almost 68 and have only had a diagnosis since 2003 when I had a crisis which put me into Emergency.

In my opinion it is absolutely vital that you take the advice offered to you here and insist on a referral to the Royal Free. I have no doubt that if I had been fortunate enough to have specialised care sooner in my life I would probably be much better than I am now. As it is I have no skin involvement but I do have organs affected
and that can be a real worry.

Even though your daughter is now technically an adult, and you will probably have clashes with her for a while yet, you are absolutely right to insist on supporting her and going along to her appointments. We have a son, now 35, who had health worries for a long time and didn't really like me interfering, now he thanks me frequently for being there with him.

Keep in touch with us for your own peace of mind and education. You will constantly come across health professionals who will have no idea what Scleroderma can mean and you will soon find yourself educating them as well.

Best wishes from the upside down side of the world.
Warm hugs to your daughter

JudyT

#10 Amanda Thorpe

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Posted 30 November 2011 - 12:43 PM

Hello Louise

I just had a thought (ouch!), maybe you could print this thread off and give it to your daughter to read? As you know the thorny issue with her decision to stop MMF in favour of light treatment is that nothing is being done to try and protect her internal organs. Scleroderma is an autoimmune disease meaning the immune system attacks the body, as you know, and the idea is that MMF suppresses the immune system to try and minimise/prevent further damage to the body, in particular the internal organs.

I totally understand your daughter's concerns about her appearance, when I first met with Prof Denton, specialist at the Royal Free, my final question to him was "will my face be affected?", I was 39 years old at the time.

Take care.
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#11 louiserawlings01

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Posted 30 November 2011 - 01:29 PM

Hello Louise

I just had a thought (ouch!), maybe you could print this thread off and give it to your daughter to read? As you know the thorny issue with her decision to stop MMF in favour of light treatment is that nothing is being done to try and protect her internal organs. Scleroderma is an autoimmune disease meaning the immune system attacks the body, as you know, and the idea is that MMF suppresses the immune system to try and minimise/prevent further damage to the body, in particular the internal organs.

I totally understand your daughter's concerns about her appearance, when I first met with Prof Denton, specialist at the Royal Free, my final question to him was "will my face be affected?", I was 39 years old at the time.

Take care.

Oh my, you must be reading my mind, as that is exactly what I did. Its my birthday today and the family bought me a laptop and was so excited the first thing I did after setting up was go on to my emails and there were all the responses. As I had a lovely little glass of rose with me my tongue was a little loose and when she asked what I was reading I told her, she then sat down and read everything. We have had a good chat and will speak with the consultant about getting off the steroids, staying on the MMF and having light treatment on the affected areas.

Will let you know how we get on. She has also asked that we speak to her consultant about the London clinic.

Thank you for all your continued help

#12 Amanda Thorpe

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Posted 01 December 2011 - 01:52 PM

Hooray Louise and daughter!! :emoticons-yes:
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#13 louiserawlings01

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Posted 01 December 2011 - 02:41 PM

Hooray Louise and daughter!! :emoticons-yes:

Thank you Amanda she has opened up a little a told me about all the unexplained symptoms she has been having over the last few weeks, she didn't want me to worry (nagg) so she didn't tell me... we sat down and googled symptoms of steroid withrawal. She is getting quite a lot of the symptons as she is slowly being taken off the steroids. I have to say after reading the information on sclero and steroids I'm more than annoyed that we were not made aware of all the facts. While I fully understand that if you list everything that could go wrong you would run a mile from steroids, I feel that the risk was far greater than to be just brushed over. As far as I am aware my daughter's consultant is a sclero specialist, she is Dr Grey at the Western General Edinburgh, her fellow consultant is Dr Dhillon but Cheryl felt that she was very abrupt, in other words didn't listen to her moaning :D . Dr Grey said that she has delt with several scleroderma cases but Cheryl is her youngest patient so far. We are still going to ask to be referred to the London clinic but as she has a sclero doctor I'm not sure they will entertain her.

Will keep you posted

#14 Amanda Thorpe

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Posted 01 December 2011 - 04:09 PM

Hello Louise

That's great news about Cheryl opening up a bit more and yes steroid withdrawal can be really tough and many people take months and months to accomplish it so slowly does it. I had them at a very low dose (7.5mg maximum) in my first year, under supervision of a scleroderma expert, and once I got off them I swore I would never take them again. Even at a low dose I felt the difference, and not in a good way, when I took them and when I came off them so Cheryl has my sympathy for sure!

Maybe Cheryl might want to have a crack at post or two herself? We'd love to hear from her.

Take care.
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#15 chockers

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Posted 01 December 2011 - 05:59 PM

Hi

Just tell the wee girl that sometimes the pills take weeks or months to kick in. It is too early to say they are doing no good .

Chris

#16 louiserawlings01

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Posted 13 March 2012 - 08:41 AM

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.....

#17 inkedup

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Posted 13 March 2012 - 10:35 AM

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!

#18 Joelf

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Posted 13 March 2012 - 03:20 PM

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,

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#19 judyt

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Posted 13 March 2012 - 04:58 PM

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

#20 Amanda Thorpe

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Posted 14 March 2012 - 04:00 PM

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.
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