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Diagnosed With Morphea A Week Ago


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11 replies to this topic

#1 sueinvabeach

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Posted 06 May 2007 - 04:38 PM

Hi, I don't know if I am in the right place or not. I guess time and reading will tell. I'm a 39 year old (;-) refuse to say I'll be the 4 zero word in the summer), 2 teenage kids, a wonderful husband. In the last few months I have been diagnosed with Diabetes, Osteoarthritis and now this.

My dermatologist has diagnosed me with Morphea after doing a punch biopsy. He has put me on a medicine called Taclonex.

Anyone out there have Morphea, and can tell me what to expect, what to watch for?

I am thinking 2007 is my year of being testing, cause I went from having to deal with my asthma acting up in the spring and fall to all kinds of medical issues....carry issues I might add.

Thank you,

 

Sue


Asthma 1998, Diabetes 2007, Morphea 2007, Fibromyalgia 2007.

#2 Carolynv

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Posted 06 May 2007 - 07:51 PM

Hi Sue,

 

My 4 yr old son was diagnosed with morphea a couple of months ago. As bad luck has it, it is on his face, so needed aggressive treatment for cosmetic purposes.

He goes to hospital once a week and is put on an I.V. drip of Methyl Prednisolone. He also takes a Methotrexate once a week. The hospital visits are to continue for approx. 6 months and the Methotrexate is for approx. 2 years. Since starting his treatment he has had no further spreading.

We found that our Dermatologist could only treat the patches as they appear & that's why we decided to go to a rheumatologist who can try and treat the actual disease.

Each person's case seems to be totally different, so I don't know what's right for you, but thought I'd share our story and see if it helps. If you haven't seem a rheumatologist, I would definitely go see one and see what they have to offer.

Kind regards,

 

Carolyn



#3 janey

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Posted 07 May 2007 - 03:24 AM

Sue,

 

Welcome to the forum! I'm sorry you are here due to your recent diagnosis. Yes, you are in the right place. This is a place of support and information. Great people, great research articles.

Here is are page on Localized scleroderma: morphea. It covers complications, diagnosis, treatments and more. I hope you find some good information. I don't have morphea so I can't help you personally, but it looks like Carolyn has already provided some valuable experience and I'm sure others will chime in.

Again, Welcome. Please do not hesitate to post whenever you need information or just an ear.


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#4 Heidi

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Posted 07 May 2007 - 03:28 AM

Hi Sue,

Welcome to the Forums! I am glad you have found us and decided to join, but sorry it is because of your recent diagnosis of Morphea. You are definitely in the right place. I don't know if you have read a lot, but we have a lot of great information on our Sclero site about Morphea. I agree with Carolyn, that you might want to seek the advice/treatment of a rheumatologist.

I hope you find this information helpful.

Again, welcome!

Warm wishes,

 

Heidi



#5 WestCoast1

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Posted 07 May 2007 - 03:56 AM

Welcome Sue,

 

I am so sorry to hear about your Diagnosis of Morphea, among the other things. I guess when it rains-it pours. On the bright side, you received a diagnosis, so now hopefully you can start to feel better with the appropriate treatment. Everyone here is such a wealth of info and support. I am glad that you found us.


*WestCoast*

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#6 Jordan's Mommy

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Posted 07 May 2007 - 08:10 AM

Hi Sue,

My 6 year old has linear morphea (aka localized juvenile scleroderma), after being diagnosis about 1 1/2 years ago. She sees a dermatologist and a rheumatologist. Her rheumatologist has her on Plaquenil, which is a disease modifying drug. Her dermatologist also has her on Taclonex which we apply to her affected finger/wrist every few days. She has been on Prednisone and Naproxen in the past to reduce inflammation, but has been off both for quite some time now. We occasionally use Vitamin D cream on her skin to keep it soft. Her disease has not spread, and she functions at 100%. Good luck to you, and make the doctors listen to you!!

Jennifer

#7 Sweet

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Posted 07 May 2007 - 08:38 AM

Hi Sue!

Welcome to the Sclero Forums. I'm so glad you are here with us. I'm really sorry to hear about your new diagnosis. :( Looks like Janey and Heidi already gave you a few links, so I will just give you a big warm welcome!
Warm and gentle hugs,

Pamela
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#8 Clementine

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Posted 07 May 2007 - 04:05 PM

Sue,

 

I am really sad to hear you were diagnosed with Morphea. It must be a very tough time for you. I hope you can find some comfort with us here on the forum. I know you will certainly learn a lot here.

 

Take Care,

 

Jennifer



#9 sueinvabeach

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Posted 07 May 2007 - 04:25 PM

Hi Everyone,

 

Thank you for the good information. It gives me a place to start. I have read all kinds of things about this; some confusing and some just down straight scarey.

However, at least I have starting point. With the arthritis, I already have a rheumatologist and have a follow-up appointment with him the end of the month. It was actually, Dr. T who mentioned I should probably see the Dermatologist when he was doing the initial exam and noticed all the white/"shiny" patches.

I guess the scariest part is gone, or I certainly hope it's gone, that it is not hereditary. The thought of passing this on to my children or their children is just a little more than I could/can take.

I am so glad I found this forum, found people with or family members with it. At this point I have been not much more than an emotional wreck. So, trying to keep it together, trying to work, trying to not scare my kids, and trying to figure out how to tell my parents (75 and 81 year olds) has kept me in tears or one blink from them.

Thank you again, hugs to all.


Asthma 1998, Diabetes 2007, Morphea 2007, Fibromyalgia 2007.

#10 Louxx

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Posted 10 May 2007 - 08:49 AM

Hi Sue,

 

I was diagnosed with linear/morphea when I was 7 or 8 years old. I'm now 18. I'm so sorry to hear about you being diagnosed with morphea, but hopefully you will learn more about it by reading these boards. I know I definitely did.

 

One thing I think you should do though is tell your family as mush as you can about it.

My scleroderma has made my skin on my left leg tight, and my joints and muscles are weak now. I should really do my physiotherapy, but its so time consuming!!

I only found out about this disease properly last year when I joined this board. You are also lucky to have a doctor who is willing to give you treatment, Whereas with my doctors, they have never gave me any sort of treatment so I'm getting no help with my pain or tight skin on my leg.

I hope you start feeling better soon.



#11 jefa

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Posted 10 May 2007 - 08:55 PM

Hi Sue,

 

Sorry to hear about your recent diagnosis of morphea. I don't have anything more to share about this form of scleroderma than the folks who have already posted, but I do sympathise with you trying to decide how much to share with your parents. I think the first thing we all do when we get a diagnosis is to panic and think of worst case scenarios. This in itself causes stress which is no good at all for us. I have found that maintaining a positive attitude, assuring myself that I will beat any odds thrown my way, goes a long way towards making me feel and live better. My own parents are 80 and 83 and while I have talked to them several times about my illness, they keep forgetting everything, confusing what they do remember and telling other people that I have things I never heard of. Needless to say, I don't share technical articles with them! Kids on the other hand seem quite good at handling an honest approach to illness as long as it is presented in their terms.


Warm wishes,
Jefa

Carrie Maddoux
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#12 jefa

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Posted 10 May 2007 - 08:58 PM

Hi Louise,

 

I have been wondering how you are doing. Yes, the physio is time consuming, but you really do need to make the time for it. Your body will thank you for it.


Warm wishes,
Jefa

Carrie Maddoux
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International Scleroderma Network (ISN)