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Remission?


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#1 georgette

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Posted 23 October 2008 - 12:56 AM

Hi everyone,

I have read on the internet that there is no cure for scleroderma, is that true or misinformation?

Also what about remission, can one go into remission and is there any stories around about how long remission is and have some people stay in remission?

I would appreciate any feedback.

Hugs,
georgette

#2 Margaret

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Posted 23 October 2008 - 05:00 AM

Hi Georgette ,

I, too, am interested in this. Gareth went down hill (for nine months) after being diagnosed. He was put on Plaquenil and, after 2-3 months, was back to 'normal'. Does that constitute remission? The rheumatologist doesn't say yes or no.....justs smiles and says to keep him on the Plaquenil. If I take him off it, she is afraid he will get reoccurring symptoms. Good question.

Take care, Everyone.
Margaret

#3 aka79

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Posted 23 October 2008 - 07:36 AM

Hi Georgette.

I found this personal story http://www.sclero.or...zea/a-to-z.html. I think you might like it.
When I read it I felt really good. I have also read a lot about the disease activity reaching a plateau where you are past the most critical and damaging part. After that, most people would only need to keep an eye on things and probably a maintenance dose of medication.

I think there is not a lot of information about the plateau because the new medicines that help you get through to that stage are relatively new. That is just my opinion from what I have read; I was just diagnosed yesterday lol.

There is a lot of great people in this forum that have gone through this and can tell you more about it. I believe also Janey mentioned hers is considered to be in remission.

Best of luck to you

Ana

#4 debonair susie

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Posted 23 October 2008 - 08:10 AM

Hi georgette,

There are so many others here much more knowledgable than I. However, there is no cure, as of yet...for Scleroderma.

I'm quite sure we all differ, as to whether or not we've felt like we were in a "remission"...and the length of time The only time I can say I felt the best I have...since 1991...is summer before this last...from May to December. I wasn' t fatigued, I had no pain, I had stamina...I felt really GOOD :rolleyes:

I have had what I would call flares, be of varied duration...feeling so ill, doing anything had been like climbing a mountain.

There is alot of great information right here on the Scleroderma site!

Hugs,

Susie
Special Hugs,

Susie Kraft
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#5 Amanda Thorpe

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Posted 23 October 2008 - 05:34 PM

Hello Georgette

There is no cure for scleroderma only treatments for the symptoms and to try and halt progression.

My rheumatologist said that the disease plateaus and then becomes inactive as opposed to actual remission. The initial activity period is usually 3-5 years when you get the initial onslaught of symptoms but further symptoms can develop after that later on down the line.

I understand that the fatigue is supposed to get better as can some of the symptoms although flares happen.

The difficulty with sclero is that everyone can be so different and it's impossible to predict how anyone will progress so we carry on regardless! :lol:

Take care.

Amanda
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#6 Amanda Thorpe

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Posted 23 October 2008 - 05:41 PM

Georgette

I meant to say that the first sclero sufferer I met was diagnosed 25 years ago. Her mobility was back to normal as was her skin but she is on dialysis having had renal crisis with the early sclero and she still has fatigue. Having said that she's a busy girl even travelling abroad with work frequently. You can most definately improve even if symptoms or the effects thereof of still remain.

Amanda
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#7 barefut

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Posted 23 October 2008 - 05:56 PM

Hi Georgette,

Yes, there is no cure, only treatments for the symptoms. But promising treatments and new and exciting studies and discoveries going on all the time. You will find the best, most up-to-date information in the ISN newsroom. Also, our own ISN Assistant Manager, Lisa Bulman, is participating in a study herself.

Personally, I have remained stable since being on Cellcept for the past 2+ years. Although my symptoms wax and wane with "that" time of the month as well as with the seasons. Fall/Winter of course being the hardest on me not just because of the cold and my Raynaud's but also because I tend to be more stiff and immobile, even in my face.

I see you joined us in May. I am glad you have come here to ask questions. I wish I would have found ISN sooner after I was first diagnosed. This is a very informative and comforting group. I have to end with my favorite smiley becasue this is how everyone makes me feel here :D

#8 epasen

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Posted 23 October 2008 - 07:32 PM

Georgette, I was in a remission for years, so it is possible. You can never know when it's gonna happen. :)

Emmi

#9 georgette

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Posted 24 October 2008 - 01:06 AM

thanks everyone for your input , so its final then that there is no cure but it is not hopeless it does abate at times go dormant for a time but will always be there , well I guess that is better news than no cure ,no remission and no hope eh ? its sure no fun haveing sclero , I saw the video razz made it was so good but I was surprised by her hands ,once ya hands get that bad can they come back to normal if ' n go into remission ? hugs georgette

#10 Amanda Thorpe

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Posted 24 October 2008 - 11:18 AM

Georgette

My hands are very similar to Razz's except I would say hers are worse. I did ask my rheumatologist about this and he said it is possible for them to return to normal, however, the contractures can damage the joint. If the skin softens you may/not get normal hands back. Like everything else no one can say for sure!

I always assumed that if the skin softened the movement came back so was rather surprised to find out otherwise. :blink:

Amanda
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#11 janey

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Posted 24 October 2008 - 12:13 PM

Georgette,
I certainly wouldn't say there is no hope. Yes, there is no cure but once the disease goes inactive, things can improve. That has certainly been the case with me. Six months ago I had no hope. All my tests showed things were stable, but I just couldn't do anything physically. I switched cardiologists after my other one said "Well, they is nothing more I can do for you." My new cardio found the problem right away, fixed it, put me through cardiac rehab and now I'm "almost" the "before Janey". My husband is amazed in the change in energy, stamina, activity and overall well-being. So there is hope. :) You've just got to have it, and keeping pushing for answers and solutions. Don't let a doctor say that there's nothing more he can do.

Big Hugs,
Janey Willis
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#12 debonair susie

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Posted 24 October 2008 - 03:07 PM

Well, Janey...

You are a wonderful example of what great doctoring can really do...and I'm so glad the new cardio was "on task", Janey!

So, keep on keepin' on, Everybody!

Hugs,
Susie
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Susie Kraft
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#13 georgette

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Posted 25 October 2008 - 02:12 AM

Evening everyone. I just wanted to thank you all for your very informative input. You've all given me a little hope that remission is definitely something we can put on our 'wish list'........

Once again, thank you all.

Hugs,
georgette

#14 razz

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Posted 26 October 2008 - 05:03 AM

Hi georgette,

I've also heard that people do go into remission with scleroderma. Since everyone's symptoms and degree levels are different, the affects vary from person to person. My condition was very fast moving and aggressive. I was switching doctors and treatments every 6 months (thank goodness I live in a large city where I can do this) because no treatment would slow or stop the disease. By the time I had the stem cell transplant, I already had the full affects, contracted fingers, tightened skin and overall systemic involvement. I did undergo hand therapy my first two years, and worked on my fingers as much as possble but they had a mind of their own. My doctors and I were hopeful that after the transplant my hands would have loosened up and returned to normal. Some people whose fingers are semi-bent can regain the full use of their hands again.

You do pose a good question. Is it possible? Yes, remission is possible and I do hope that for you too! :)

Hugs,
Razz
Live well, Laugh often, Love much

#15 RememberingToSmile

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Posted 26 October 2008 - 06:10 AM

It is a good question -

At the start of this, I found it very scary to read that there was no cure.

However, now I realize and have read about many other common diseases where there is also no cure, but are well controlled with medications, etc. I try to keep that perspective and stay confident mine will be well controlled (if not this month, then the next)


-RTS

#16 georgette

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Posted 26 October 2008 - 10:44 AM

hi everyone, so razz does that mean that if you even go into remission will your hands stay that way? my fingers are fat and have a curl in em I can't make a fist but nor can I straighten em. I guess I'd like to know how many sclero hands get fully distorted like razz's as opposed to how many hands stay where mine are at. I can't even begin to think how tuff life must be for you with your sclerodactyly. hugs georgette

#17 Kamlesh

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Posted 27 October 2008 - 08:19 AM

Georgette,

I had symptoms for Scleroderma for over ten years and I was officially diagnosed in March 2004. I believe I am in remission. I took Cellcept 3000 mg for over two years. I have damage to lungs and esophagus which cannot be reversed. My skin is normal now. I have Raynaud's, but I take medication for Raynaud's in winter months only for 3-4 months. I regularly do yoga, breathing exercises, and walk for 2-3 miles a day. I also try to do activities I enjoy which have helped me to come out of severe depression.

So no scleroderma medications, and no depression medications anymore.
Kind regards,

Kamlesh