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Emma123

En coup de sabre.

80 posts in this topic

Hello Katchan

 

I may be able to help with the headache, it may well be the mycophenolate. Look at the leaflet that comes with the tablets and it should be listed as a side effect, it was in fact the side effect that put an end to me taking it. I tried it on and off over a number of months and there's no doubt it caused me severe and frequent headaches. Also, Prof Denton (scleroderma expert) confirmed that mycophenolate can cause headaches, worth bearing in mind that this comes from a scleroderma expert should another consultant tell you the contrary. This happened to me and consequently I persevered with the drug and suffered crippling longer than I needed to.

 

Netdoctor states that mycophenolate can cause fatigue and headaches, and MedlinePlus also confirms it cause a lack of energy.

 

I don't understand how stopping in March will determine whether the drug is working for you or not and would have thought it would be an idea to use this stoppage time to see see whether your potential side effects abate. If your fatigue and headaches go then you'll know they are being caused by mycophenolate. By all means see the neurologist but I find it most odd your doctor hasn't considered that your headaches, at least, could be caused by mycophenolate.

 

You must bear in mind that I am a non-medical layperson speaking from my experience not any medical expertise and my experience says that the mycophenolate could be causing your fatigue and headaches, at least. I am assuming you have regular blood tests and that they have all been okay?

 

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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Thanks Amanda,

 

I have blood tests every 4 weeks and all have been fine, I have never considered that it could be my medication making me feel this way, I will mention this to my consultant next week. I have a scan booked soon and suppose I am a bit scared as two of my close family have brain tumours so am probably being a bit paranoid. Will keep you updated on what the consultant says, thank you for the advice.

 

Best wishes,

 

Kate

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Hi Kate,

 

Headaches are just the pits!! wandering round all day with a thumping head is something I have done for far too much of in my life. In about 2004 or so my doctor and I finally got onto a combination which worked and the headaches were gone, poof just gone. That lasted 7 whole 'blissful' years until a change of medication came along.

 

It took months of pain to figure what was doing it, and for a while I was back to headachless bliss. Didn't last though, now, because I have PBC and my liver is developing cirrhosis I am back on another new med. which stirs up my head - you can't win it would seem.

 

However, don't despair, just remember that it can be the medication which is causing the grief and see what you can do to ease it. For me, in some cases just a change of manufacturer (and extra cost of course) can do the trick, at other times like now there is only one medication to help my liver and I don't think there is more than one manufacturer but I certainly plan to ask when I see my Liver Lady in a couple of weeks time.

 

Sending you good wishes that you will be able to solve your problem.

 

Judyt

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Hi again,

 

Well went to see the neurologist, told me he thought En Coup was really boring and without even examining me told me I am suffering with severe migraines and gave me some antidepressants to control them. I feel really let down by the NHS, feels if they don't know much about something just chuck some pills at it and hope for the best. I'm seeing my dermatologist soon so maybe will talk through with him, fed up of feeling like a freak!!

 

Kate (katchan)

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Hi Kate,

 

You may now want to consult your scleroderma expert about the migraines. I quote from the main portion of our website:

 

"Overview of Localized Scleroderma Brain Involvement Localized scleroderma has also recently been associated with brain involvement, particularly with linear scleroderma and the type known as scleroderma en coup de sabre or Parry Romberg's syndrome. Findings include focal and progressive brain lesions, progressive brain atrophy, epilepsy, neurological symptoms, intracerebral inflammatory processes, migraine headaches, and trigeminal neuralgia. Therefore, neuroimaging studies should be considered in all patients with linear scleroderma, and certainly when neurological symptoms occur."

 

Now that you've had the migraines diagnosed, it would seem that the logical next step would be neuroimaging studies. At the very least it would provide a good baseline for you, should anything more develop in the future.

 

The good news in all this is that the antidepressants may help prevent migraines and reduce their frequency. As a migraine sufferer myself, I know that any sort of prevention or treatment for them is most welcome...especially if it works! So I'm hoping it proves useful for your migraines. But it would still seem to me, a casual observer with no medical training at all, that the next logical step for you is neuro-imaging.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Kate,

 

Shelley has given you good advice, don't let anyone tell you En Coup is boring and not worth dealing with - that is dreadful. :emoticon-dont-know: I can't believe some practitioners can be so off-putting.

 

Anti depressants are not the only meds which will help control your headaches and I do understand how you feel so let down from being treated this way. Migraines were one of the first things that I started getting once the Scleroderma got going, although I didn't know it at the time. My first general practitioner sent me home with an antidepressant and told me I was overprotective of my children and anxious. Of course I was anxious, things were happening that were not normal.

 

My next general practitioner (I changed pretty quick) sent me to a Neurologist who did a proper investigation including brain scan and then decided that I had classic Migraine and I was treated for that. Much later in my life I finally got a diagnosis of Sclero and all of a sudden I was being treated more or less correctly and my headaches ended up being under control.

 

It is important to get to see somebody who knows what they are dealing with. There seem to be good centres in the UK so you should be able to get a referral to somebody somewhere who is going to look after you better than what you are getting now.

 

Best wishes

Judyt

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I'm still trying to figure out how en coup de sabre is boring!

 

Apparently you must have missed the poster that it is your job to entertain your physicians at all times? If a mere very rare disease is not enough to meet with their applaud, maybe next time you could try presenting your symptoms via a skit, poem or video?

 

Doctor, dear doctor,

So sorry, I'm sick

En coup de sabre

Has me feeling ick!

 

Doctor, dear doctor,

Oh what can you do?

My head is hurting

And I have en coup!

 

I do hope you've made a quality decision to never see that particular doctor again!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello,

I am a 22 year old male and when I was about 11 or 12 my parents and I started noticing an indentation on the crown of my head. It was about this time that I also started having migraines. Thinking  of the dent as nothing  more than a soft spot, we went to our family doctor about the migraines.

 

The doctor prescribed some migraine meds (which did nothing) and referred us to a dermatologist for "the dent." One dermatologist sent us to another when I finally ended up at a dermatologists conference where I sat on a table while 15 doctors looked and felt my head.

 

They finally decided on a biopsy which confirmed scleroderma. I was then sent to a neurologist who walked in, felt my head for 2 minutes and said it's scleroderma and there's nothing to do about it and the migraines were not related. By this time I had developed another spot on the left side of my head above my ear.

 

So (at 17 after another visit to the neurologist), frustrated with no one having any clear answers I told my parents I was over it and could just live with it and wanted no more doctor visits. Well last summer I started noticing yet another spot on the right side of my skull. So I started doing research of my own and came across a study that linked sclero to migraines and other neuro problems. Being that I would like to have a family one day I've decided to check things out again with specialists. I have an appointment with the Mayo Clinic in April. Hopefully I'll get some info.

Just wanted to see if anyone else has had the same frustrating experiences and if anyone else has heard of spots around the crown of the skull.

Thanks,


Brawnson

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Hi Brawnson,

 

Welcome to Sclero Forums!  I'm sorry you have en coup de sabre, and send my best wishes to you. There are treatments available now, including UVA1 Phototherapy, that you might be interested in.

 

I know what it's like to become discouraged with doctoring; its especially frustrating and unfortunately it is also especially common when dealing with rare diseases, like scleroderma. As it happens, you must have been consulting a doctor who was not a scleroderma expert, nor had he bothered doing any research on it to find out the known complications or current treatment options.

 

As you've discovered, your migraines may be associated with en coup, please see our section on Localized Scleroderma Brain Involvement for more information.

 

I hope that you feel encouraged with more treatment options available and more information to help guide your care.  Please keep in touch and let us know how things are progressing.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Brawnson,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with en coup de sabre and have had such a frustrating experience with your doctors. Sadly as Shelley has said it is quite common to hit a brick wall with some doctors who do not have the knowledge and expertise (but do have the ego!) to deal with such a diverse and complex disease as Scleroderma. I was incredibly fortunate with my medical team and received excellent treatment, but I know from some of our members' posts that not everyone has been so lucky.

 

Now that you've found our forums and joined our community, please do keep posting and let us know how you're progressing.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

I am after some advice as I am not seeing my consultant for a few weeks.

 

I have en coup on the right hand side of my forehead but in the last few days have noticed that I now have a dent inside my dent and my right eye is painful, feels like I have been punched.

 

I have been off the mycophenolate for about a month now as my consultant said that was the only way they could see if it was working.

 

Feeling a bit scared of what is happening, any advice greatly accepted.(have only had en coup for 17 months and came on very quickly).

 

Kate

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Hi Kate,

 

I'm sorry to hear that there seems to be a further problem with your en coup de sabre.

 

I'm afraid I can't really advise you on your new symptoms, as I have no medical training, apart from a now out of date first aid certificate and no personal experience of en coup de sabre, but I would hazard a guess that perhaps discontinuing the mycophenolate has accelerated the symptoms?

 

I hope you don't have to wait too long to see your consultant, who hopefully will be able to advise you further.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi,

I am seeing my consultant next week!

 

Do you know of any trials, etc., concerning en coup de sabre? Or anything else such as experts, as my consultant has been trying to find out with no luck as yet.

 

Kate

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Hi Kate,

 

It's my understanding that UVA1 Phototherapy is now one of the first-line therapies for en coup de sabre, as well as for other forms of localized scleroderma such as morphea and linear.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Emma,

 

My name is Dee and live in Birmingham England. I have a daughter who is nearly 40 years old who was diagnosed with En Coupe de Sabre in 1978. I first noticed a small loss of hair when she was 2 years old which progressed to a bigger patch and a indent in the skull which goes from the top back of her head to the front of her head going through her forehead eye and nose; she had been very good at disguising it and covering it with her hair.

 

At that time I was unable to find out much about En coupe de Sabre in those days as little was heard of it and the only Specialist Doctor who knew anything about this shot himself a few weeks before they were due to operate on our daughter. She has since grown into a young lady and has children and a grandchild of her own all doing fine and touch wood without the same.

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Hi Dee,

 

Welcome to Sclero Forums.  I'm sorry your daughter has en coup de sabre, but I am delighted that you reached out to provide assurance to Emma about it.  How sad about the doctor.  And congratulations on being a great-grandma!

 

Anyway, it's a joy to have you here and thank you for participating and offering support to others. We all appreciate it.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Dee,

 

Welcome to these forums!

 

I'm very pleased to hear that your daughter's children and grandchildren do not suffer from En Coup De Sabre and thanks so much for posting the encouraging advice for our members who do have it and are concerned about any future children being affected by this disease.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Dee

 

Welcome and well done! You daughter's coped so well with a difficult disease because of your influence and to say thank you she's made you a grand ma and ultimately a great grandma!

 

I'm a great aunt but "just" a grandma and, oh my, aren't they peculiar little critters! How can something with so small legs move so quickly? How can the owner of such a face have done that...no, that's right... nothing done...good as gold!

 

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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Hello Kate

 

Mycophenolate takes around 3 months before it starts to work so I have no idea what your consultant is doing but I don't see how it can work...

 

It might be an idea to read up on mycophenolate and discuss it with the doctor...

 

However, Shelley's quite right UVA1 phototherapy is now the first line treatment for localised scleroderma of which en coupe is one type. Mycophenolate is usually used for systemic scleroderma.

 

You might want to find a consultant more familiar with scleroderma...

 

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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Hi, I'm mum to a 12 year old who has En Coup De Sabre which runs down her forehead to eye brow. This is all very scarey for me, as we are still waiting to see a specialist (we are in NZ.)

 

I've been reading through a lot of posts and see many people have had it since a child and it hasn't caused problems; is this normal? It says it's a rare thing? How rare? Sorry I'm very new to this and worry what the future holds for my daughter :(

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Hi Jenny,

 

Welcome to these forums!

 

I'm very sorry to hear that your daughter has been diagnosed with En Coup De Sabre; it must be very worrying for you and I've included a link to our medical page to give you some more information.

 

One of our Support Specialists, Judyt, is in NZ and I expect she will be able to give you some more advice about Scleroderma specialists in your country; we do recommend that our members, if possible, consult an expert, as this complex disease does require specialist knowledge and expertise.

 

To give you some more help I've included a couple of our previous threads on the subject.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jenny,

 

Welcome to the forums, but I am very sorry it is because of your daughter's En Coup de Sabre.   I have a 12 year old granddaughter and am very aware,again, how self-conscious they are at that age.

 

I see you are here in New Zealand and I wonder where exactly, and who you are waiting to see.   It is not easy for us here but there are support groups and some Doctors who know more than others.

 

If you would like to you can send me a Private Message and we can talk about specifics.   To send me a message just double click on my name at the top of this post and a box will pop up.

 

In the meantime here are some hugs for your wee girl :emoticon-hug: :emoticon-hug: :emoticon-hug: and tell her that we send her lots of love.

 

Judyt

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Hello Jenny
 
Welcome and I am sorry your daughter has en coup de sabre. You are in the right place for the best information and support for any type of scleroderma.
 
Any type of disease is hard to bear especially if it affects your child, the good news is that en coup de sabre is a type of localized scleroderma and therefore does not affect the internal organs or life expectancy. That said it can sometimes cause other symptoms, a 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non cutaneous (non skin) symptoms, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non cutaneous symptoms and none of the people in the study developed systemic scleroderma during follow up.

 

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 Jenny,

 

Welcome to Sclero Forums!  I'm sorry your daugher has en coup but I'm very glad that you found us, and I hope we can be a continuing source of information and support for you. Jo, Judy and Amanda have given you some great resources. Please keep in touch with regular updates and questions, we always appreciate that, and look forward to getting to know you better.

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Jenny,

I'm a mother of an eight year old daughter who was diagnosed with En Coup de Sabre in August 2014, and I really understand your worries about getting information. We live in Sweden and haven't heard about any one else with the same diagnosis.

 

Elsa has a big bald spot at her scalp and the sclero is running down to her left eye. She is having Methotrexate once a week and hopefully that will stop it from going any longer.

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