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Morphea and CREST


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#1 KayTee

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Posted 17 November 2010 - 04:19 PM

Hi everyone,

It's been months since I've posted or been online at this site because we sold our east coast house and moved west to a warmer climate which is helping my cold cold hands. (Plus grandkiddies are here!) Before we left I had seen ivory colored areas on my thighs with redness in-between and then that started spreading up to my trunk. I was fortunate to find a very good dermatologist on my first try here in San Francisco who did a biopsy for morphea - which it is.

Does anyone else have two different types of scleroderma? Any suggestions for coping? Or suggestions for types of clothing that don't irritate?

Thank you and warm hugs to all,
Kay Tee

#2 Shelley Ensz

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Posted 17 November 2010 - 04:27 PM

Hi Kay Tee,

Welcome back to Sclero Forums! I'm glad your move went well.

I'm sorry that you've also developed morphea scleroderma. It's quite rare, but it does happen sometimes (studies say about zero to 4% of the time) for an overlap to occur. I think Amanda has both, so you will probably be hearing from her soon.

I had suspected morphea as well, at one point. But the biopsy showed that the patches are caused by residue for minocycline, which was at one time wrongly touted as a possible 'cure' for scleroderma. It sure didn't cure me, but it did leave me with some permanent spots that resemble black and blue marks.

I hope you continue to find it an improvement to live in a warmer climate. San Francisco is gorgeous, and I'm sure I'm not the only one who left my heart there!
Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 18 November 2010 - 01:01 AM

Hi Kay Tee

A warm welcome back to the forums!

Thankfully I don't have Morphea Scleroderma, so can't actually advise you, but hopefully the move to a warmer climate will make you generally feel a lot better.

I'm looking forward to reading more of your posts. :)

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#4 Amanda Thorpe

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Posted 21 November 2010 - 10:22 AM

Hello Kay Tee

Sorry I've only just chimed in! I have systemic slceroderma along with morphea and bullous morphea, which is the blistering form of the disease.

I'm on methotrexate for the systemic form and also use a steroid ointment for the blistering form and moisturising cream for the regular morphea. The regular morphea has improved but I have no way of knowing if it's because of the methotrexate or the natural waxing and waning of the disease. Unfortunately nothing seems to work on the blistering form which is ever present on my right shin.

From a comfort point of view moisturising is very important and when my skin was really itchy and irritated soft clothing was a must. I have a friend who wears her clothing inside out so that any seams don't come into contact with her skin, I don't think it will catch on as the latest trend though! Another friend used to wear very soft tights under jeans etc to keep rough fabrics from coming into contact with the morphea patches.

I'm afraid it's a case of trial and error but please do share any tips you come up with.

Take care and keep posting.
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#5 debonair susie

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Posted 21 November 2010 - 12:37 PM

Hi KayTee,

I'm so glad you were able to move to a warmer climate (our son and his family live in San Francisco)! I'm quite sure you will do well there, where your health AND your grandkiddos are concerned :jump-for-joy:

I have several diagnoses, but among them, "only" one type of Scleroderma.

As for clothing that irritates (the least), I virtually lived in SOFT, non-binding loungey pants/tees and dusters while my Psoriasis was so out of control. I absolutely could not have anything binding around my waist, or anywhere else, for that matter.

I'm happy you are back (with us) here! Looking forward to hearing from you now! In the meantime, here are some {{{Soft Hugs}}} to tide you over until we get another post from you!
Special Hugs,

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#6 Shelley Ensz

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Posted 22 November 2010 - 12:50 AM

Hi Kay Tee,

For types of clothing that do not irritate affected skin, you might consider taking up sewing. I took it up as a hobby several years ago, when my husband bought me a sewing machine for a present. One of the things I love about making my own clothes is that I can pick the fabric and the fit.

I'd suggest going to a fabric store, and just feeling all the different types and weights of fabric. You might discover you prefer a silky fabric next to your skin, or perhaps a soft flannel. Likely, you might discover that denim is very harsh compared to other fabrics, even though we tend to think of jeans as being the most comfortable. Be sure to sample the fabrics for babies, too, as sometimes they are especially soft.

With that fabric "feel" in mind, you'll know what to look for when you're shopping. Or, you might decide to take up a new hobby!
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.

#7 KayTee

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Posted 26 November 2010 - 11:44 AM

Thank you for your insights Amanda.

The steroid lotion is helping with the burning/itchiness or the morphea and hopefully more medication won't be needed. I've read that morphea tends to subside after a while although it never goes away. Has that been your experience?
Thanks.
KayTee
Kay Tee

#8 KayTee

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Posted 26 November 2010 - 11:47 AM

Thank you Susie. I think I'm going to make Soft Hugs my mantra.
Soft Hugs and Soft Clothes!!

I've decided a 'new' life in the Bay area requires new clothes and I'm purchasing the occasional soft cotton item. Occasional because what feels good in the store doesn't always feel good after an hour on. And I've discovered not all cottons are the same.
But I'm a lifelong learner.
Thanks for your warm thoughts
KayTee
Kay Tee

#9 KayTee

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Posted 26 November 2010 - 11:49 AM

Thanks Shelley. I love the idea of baby fabric.

My fingers are too 'dislocated' and sore to sew but my daughter-in-law does occasionally.
Perhaps I can work with her on the Soft Pants Project.
Great idea.
KayTee
Kay Tee

#10 enjoytheride

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Posted 26 November 2010 - 12:12 PM

Welcome to California- I'm way north of you- almost to Oregon.
Isn't UCSF full of great doctors? They are rated something like the fourth hospital in the US for immunological disease.
I laughed when I read this- it is strange to find someone who considers San Francisco warmer. It is but it's hard to remember that when the fog rolls in. I can remember it cresting the hill behind my Auntie Bea's house and rolling down like a flood of water.
There are lots of speciality stores in SF so I bet you'll be able to find some who sell totally natural soft clothing.

#11 KayTee

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Posted 29 November 2010 - 12:55 PM

Thanks. Actually we are not living in San Francisco - you are right it's way too foggy (although warmer this time of year than NJ), but will be moving to East Bay where I've been told the fog rarely goes. Isn't Oregon chilly?? I haven't been to UCSF yet since I've just started to find some doctors. But I know it's there if needed.
Kay Tee

#12 Amanda Thorpe

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Posted 30 November 2010 - 04:45 AM

Hello Kay Tee

My morphea patches have faded some but I don't know whether it's from the methotrexate (for the systemic) or the morphea just burning itself out. Unfortunately the bullous morphea hasn't shifted a all, maybe it will in time.

I'm glad you're getting some relief from the itching and burning.

Take care.
Amanda Thorpe
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