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Graves Disease With Scleroderma Morphea


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#1 azrose

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Posted 11 May 2007 - 01:19 AM

I am a 52 year old female, who is new to this forum, but have spent many hours
reading on the site.

I had radioactive iodine treatment on my thyroid for graves disease about 2 years ago. About a year later, a spot of morphea (biopsied as scleroderma) appeared right over my thyroid on my neck. Has anyone else had this problem?

In the last week my spot of morphea appears to have grown. It could be possible that now with it being summer, and my skin becoming a little tanned, the white areas are becoming more pronounced. I can definately see more morphea than I could a week ago. Also the sun seems to make the area burn and itch. I am not a sun worshiper, but I do go for a walk every day. I do apply sun screen.

Steroid creams to the area does not appear to help. How fast does your spots of morphea grow??

I have a visit scheduled to see a Rheumatologist in 3 weeks

My mother died of polymyositis and scleroderma at age 42. Her sister, my aunt
has systemic scleroderma. There is also a strong history of rheumatoid arthritis and thyroid disease in the family. We call it the family curse...

Thank you for any help you can provide, especially from anyone who has had
Graves disease, or problems with the sun on their spots of morphea.

azrose

#2 Heidi

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Posted 11 May 2007 - 02:11 AM

Hi Azrose,

Welcome to the forums! I am so glad you have decided to join us and post your first message....just so sorry it is because you now have morphea. I don't have any personal experince with morphea, so can't answer your questions, but wanted to extend an official welcome! There are others here who do have morphea and I am sure they will be chiming in shortly.

Again, welcome!

Warm wishes,
Heidi

#3 Sweet

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Posted 11 May 2007 - 06:24 AM

Hi,

I too wanted to welcome you to the sclero forums. I'm really sorry you have morphea. I have CREST and so I'm unable to answer your specific question, but I know we have many here that will be able to chime in and give you input.
Warm and gentle hugs,

Pamela
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#4 WestCoast1

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Posted 11 May 2007 - 01:10 PM

Welcome azrose,
I am truley sorry to hear about all that you are going through! (and your mother, sister and aunt) This site is a great place to share with others that are suffering with similar issues.

Here is a link from the ISN main site on Morphea:\
Morphea

I am definitely not a doctor, but in my opinion, it seems that there are some families stricken with autoimmune related issues. Graves disease being one. I have not experienced morphea so I can't answer your question about that, but I would definitely bring up any and all questions to your rheumatologist.

I am glad that you found this forum!


*WestCoast*

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#5 jefa

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Posted 11 May 2007 - 08:37 PM

Let me add my welcome, azrose. Erin has given you a link that should be useful. If I am not mistaken, one of our other forum members, Piper, has also mentioned a family history with Graves disease.
Warm wishes,
Jefa

Carrie Maddoux
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#6 LisaBulman

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Posted 12 May 2007 - 01:17 AM

Hi Azrose,
Welcome to the forums! I am so glad you decided to join instead of just reading. Hopefully you will get some answers to questions here or when you get to the dr.
Keep on posting!!

Welcome again,
Lisa
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#7 Carolynv

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Posted 13 May 2007 - 02:47 PM

Hi Azrose,

My son was recently diagnosed with morphea. It started with an oval shaped white plaque on his cheek which stayed exactly the same for about 2 years. It then started going brown around the edges and was quickly followed by more small brown marks on his cheek and chin.

From what I've been told, morphea is different in each case. All I know is that the spreading stopped when we started treatment with a Rheumatologist. It involved an I.v. drip with MethylPrednisolone once a week and Methotrexate tablets.

We had no luck with the steroid creams either, which is why we went to the rheumatologist.

I hope this helps you in some way..... I know this site has been absolutely invaluable to me and my little boy!!

Warm regards,
Carolynv

#8 azrose

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Posted 13 May 2007 - 11:41 PM

Carolynv

Thank you very much for your post. It was great to hear that someone who
has morphea actually has a treatment that works. I will discuss this with my rheumatologist when we meet.

Has your son had any major side effects from the medications?

How long after starting the medications did you notice an improvement, or the lack of spreading?

How long will he have to continue the medications?

I hope your son continues to improve. Your email has given me a lot of hope.
You can not believe how much I appreciate you taking the time to reply to me.

Thanks,

AZROSE

#9 janey

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Posted 14 May 2007 - 04:03 AM

Hi Azrose,
I'd like to join the others in welcoming you to the forums! It is interesting how sometimes this disease appears to be so strongly genetic. I certainly understand why you call it the family curse. I'm sorry it has been past down to you.

Hopefully, you will find a treatment that works. We've all been through that. I'm on my fourth immunosuppresant trying to find something I can tolerate and can actually help without creating other problems. Like your mother, I have sclero/poly. I'm so sorry that she died at such a young age. I wasn't diagnosed until 49 and I'm now 53. I plan to bug my hubby for many more years to come.

Please let us know how your appointment goes. We hope you visit us often.

Big Hugs,
Janey Willis
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#10 Carolynv

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Posted 17 May 2007 - 06:28 PM

Hi again Azrose,

So glad I could be of some sort of help! I know this site helped me come to the decision to see a rheumatologist in the first place...

My son has had no adverse reactions to his treatment so far. He is a bit tired and emotional the day after treatment, but he's only 4 so it probably takes it out of him a bit! We noticed the spreading of his morphea had stopped after his third week on Methotrexate and 2nd Prednisolone treatment. Whether it was the treatment, or just good timing and the disease progression was stopping anyway...... who knows. We are still keeping a close eye on his skin for any signs of new patches. From everything I've read, in alot of cases the disease burns itself out within a few years.

One thing I know they have to keep a close eye on is the liver when you're on Methotrexate. The doctor said it can cause toxicity in the liver, so he does blood tests every 3 weeks. So far, no sign of any problems at all. His treatment involves the I.v. drip once a week for 6 weeks and then once a month for 6 months. The methotrexate he will probably be on for approx. 2 years.

I hope your visit to the Rheumatologist goes well and that he has lots of good news! The best thing is, morphea is not a lethal condition and I am so thankful my son is not going through what some of the poor people who post on this site have to suffer through.

All the very best - I would love to hear how your visit with the rheumatologist goes.

Warm regards,
Carolynv