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RememberingToSmile

Experiences With Diffuse?

6 posts in this topic

I was diagnosed with Diffuse Sclero last year and it has now been 16 months since the first symptoms appeared.

 

The medications are working and I am doing very well, considering. My question is for those with or who have dealt with diffuse diagnosis. I know we all present differently - but I am curious... In your experience -

 

once your skin symptoms lessened - how often are your disease flare-ups?

 

 

I have had a consistent pattern over the past year - cycling between 2 months very sick, followed by 2 months more functional. Recently, my skin symptms have improved dramatically (yeah). I hope this means I am going into a better time. Is it ever predictable?

 

 

-RTS

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Hi there RTS~

 

I am so sorry to hear that you are experiencing symptoms of Diffuse Scleroderma.

 

I dont have Diffuse but I think that having a "flare up" of Scleroderma is similar across the board. I have never found the flare ups to be predictable, however they are more manageable with the appropriate medications.

 

When you journal the symptoms that really stand out for you, you can begin to distinguish when a flare up is coming on.


*WestCoast*

 

********

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Hi RTS

 

I got my first symptoms of Diffuse Scleroderma in February '06. I am on Prednisone and Mehtotrexate. I am feeling a lot better, but my skin tightening is no better. What drugs are you on for this. You have given me some hope that my skin symptoms might improve.

 

Helen

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I do feel fortunate that the skin tightening is improving. My doctor comments on how remarkable it is.

 

I am on cellcept, prednisone, plaquenil, norvasc, and prevacid. The skin symptoms really improved when I went from 2 to 3 grams per day. I do my best to tolerate this dosage - drink plenty (lots) of water, always take the Cellcept on an empty stomach, and I stretch/moisturize thoroughly at least once a day. I am concerned what will happen if I have to change meds again...

 

They put me on prednisone early to help with muscle issues - I don't think either the prednisone or plaquenil have helped the skin or fatigue - but who knows. Plaquenil has been a life saver to others I know with lupus and RA.

 

Are your skin symtoms still spreading/active?

 

-RTS

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Erin-

 

Thanks for the words of support. I sometimes forget to keep written notes of the symptoms. It's great advice.

 

-RTS

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RTS,

Sorry I'm so late in replying to this....

I was initially diagnosed with diffuse (and polymyositis) in 7/03 and was put on low dose prednisone (5 mg/day) and methotrexate. That immediately slowed the fast progress of all my symptoms. (In 8 months I had gone from extremely healthy to extremely ill and weak). The only skin involvement I had at the time was on my hands and that has since softened and I've had no more skin involvement.

 

I do get flares, but as Erin mentioned, they are unpredictable except for my January flares. For me - something extreme happens each January. Sometimes I just get a couple of days here and there when I stay in my pj's take a couple naps and do nothing. But most of the time I try to stay active, at least mentally active even when I would rather do nothing. The main thing for me is to keep track of everything. I have heart/lung involvement so I'm very aware of any symptoms that may be caused by worsening problems there or even improvement there.

 

I'm so glad your skin is improving!!! That's always a good thing to happen.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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