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#1 lizzie

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Posted 11 March 2009 - 06:27 AM

Hi all, just got out of hospital today following routine 3 monthly admission for Iloprost infusion and am feeling rather cheerful. Although initially diagnosed with limited scleroderma, over last summer I had a sudden increase in skin thickening /tightening. The rheumatologist decided that I had "more than limited systemic sclerosis (SSc)" and I started on Cellcept.

It didn't initially appear to be doing much as the skin tightening continued to progress, albeit slowly. In January , after taking Cellcept for just 4 months I had to discontinue as had an oesophageal haematoma , which the gastroenterologist thought was due to the Cellcept. At the end of February I felt that the skin on my hands seemed less tight -- but thought I might just be imagining it. Anyway when I saw the rheumatologists on the ward (they do a team ward round) they said that my skin score was better than when they last saw me in December, so I wasn't imagining it! They think that even the short time on Cellcept may have had some effect or may also possibly in some part be due to the Iloprost.

I'm not celebrating too soon, but the doctors have held off plans to start different treatment (methotrexate, and if that didn't work, cyclophosphamide) and are just seeing how I go over the next few weeks. Even more surprising is that this has coincided with very stressful events in the family, and stress is considered to exacerbate things!

Lizzie

#2 Shelley Ensz

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Posted 11 March 2009 - 07:01 AM

Lizzie, what a delight that you are experiencing some improvement! I am thrilled for you and hope that it continues, despite the stress levels, which I know you are working to reduce in every way you can think of, which helps matters too.
Warm Hugs,

Shelley Ensz
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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.

#3 razz

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Posted 11 March 2009 - 07:14 AM

Lizzie,

That's great news about your skin score improving!! I hope they figure out which medication was the source of this good news. Sorry to hear about the stress in your family and I hope that improves also.

Keep us posted.

Hugs,
Razz
Live well, Laugh often, Love much

#4 Snowbird

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Posted 11 March 2009 - 10:13 AM

Lizzie

That is great news. I'm very happy for you too! I do hope the family stress settles down for you as well.
Sending good wishes your way!

#5 ashu

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Posted 12 March 2009 - 02:20 AM

hello

STRESS is one of aggravating factor in this disease. Have stress free life . cellcept is a good medication

m/o ashu
Dr;damayanti

#6 Jeannie McClelland

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Posted 12 March 2009 - 05:41 AM

Woohoo! Way to go, Lizzie! That's wonderful news. You must be so chuffed over this. I'm going to spend the day doing little happy dances for you.

Big, excited hugs,
Jeannie McClelland
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#7 debonair susie

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Posted 12 March 2009 - 06:09 AM

We'll take what we can get, Lizzie...I'm glad for you!

I am glad to read that the Cellcept has been helping.
When the skin seems to soften, it is definitely a good thing
I really didn't appreciate how nice it is to have soft skin...until I didn't have it (for about 8 years).

Thank you for sharing all of this with us, Lizzie.

I'll be keeping good thoughts for you.
Special Hugs,

Susie Kraft
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#8 Peggy

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Posted 12 March 2009 - 06:31 AM

Congrats on your good news. I also take Cellcept, and also have had IVIG therapy. My skin has softened and the wrinkles that I used to have on the top of my hands have returned. The Cellcept also improved my lung function as my PFT was better in February than it was last June. Because of that my rheumatologist has also decided to hold off on the methotrexate. I had been on the cytoxan before the cellcept but had to quit it as I developed interstital cystitis of the bladder/kidneys.

I hope you continue to improve. This disease has a mind of its own and all we can do is try to stay on top of what it's doing to our bodies.

Warm hugs.

Peggy

#9 PrincessB

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Posted 12 March 2009 - 11:15 PM

That's great news Lizzie, I'm really happy for you. B x

#10 lizzie

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Posted 14 March 2009 - 04:30 AM

Thanks to all for the good wishes. The added stress has been due to my husband having very recently been diagnosed with cancer - but after the initial shock and a bit of weepiness, now feel relatively OK about things. He is having surgery next week and will have more idea about the prognosis then- although the doctors are pretty optomistic.

I do have to say that I am frequently baffled by the manifestations of this disease (as I am sure we all are). From what I have read ( and I have read lots!) I understand that basically skin tightening begins in the fingers and works its way up. However I have always had very little involvement of the skin on my fingers, more involvement of back of hands, but most on my arms. Also read that the thickening is symmetrical but the skin on my the right side of my body and face is tighter than on the left (to my mind the eft side of my face looks ten years younger than the right!) . Are there others out there who don't conform to the textboooks?


Lizzie

#11 Jeannie McClelland

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Posted 14 March 2009 - 06:45 AM

Oh Lizzie, I'm sorry to hear the news about your husband. Let us know how things go, OK? I'm sure we'll all hold him in our thoughts, as we will you.

Non-conforming. I can't speak from personal experience since I don't have any skin involvement other than telangiectasias, but I have noticed people who've gone to the same 'live' lectures as I have whose skin involvement doesn't seem to be symmetrical or progressing from fingers upward.

One thing I never saw in my reading was whether people who have the 'sine' form of scleroderma ever get skin tightening. So, the last time I saw the rheumatologist, I asked. The answer is yes. Apparently not all do, but some get to add that item to their list of manifestations.

Best wishes and warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
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International Scleroderma Network

#12 debonair susie

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Posted 14 March 2009 - 07:23 AM

Dear Lizzie,

I was sorry to read about your husband's diagnosis of cancer. My heart goes out to you, as I can truly empathize..my husband got his diagnosis 5 years ago.

Yes, it does add stress and that's one thing we don't need! However, the tears can often help release some of the stress, thank goodness.

I will keep good thoughts of you both. Please keep us posted on how you are both doing?

Sending {{{{{Very Soft Hugs}}}}} to you, Lizzie and to Lizzie's hubby.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#13 Snowbird

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Posted 14 March 2009 - 02:26 PM

Lizzie

I am really sorry to hear that your husband has been diagnosed with cancer too. I can only imagine how hard that is on both of you.....you're both in my thoughts. It's good news that the doctor seems optimistic. Let us know how things go next week when you can, ok?
Sending good wishes your way!