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Edema...how long did it take?


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#1 anonym4444

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Posted 22 July 2008 - 09:31 AM

Hi,

I still do not quite know, what is going on...however if at all, than I would be having early diffuse SSc.

Now: some reports say, that the edema phase (puffy fingers) takes 2-3 years and over time skin hardens with diffuse SSc...others talk about weeks or month, that the skin hardens...in diffuse SSc...

So what is true...who of you had the edema phase and how long did it take..?

K.

#2 Sweet

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Posted 22 July 2008 - 10:06 AM

Hi,

I have puffiness, but no hardening. I think you'll be able to get opinions from personal experience here, but I don't think anyone is going to be able to give you a solid answer that you can use for your situation, because everyone is so different. What happens to one person may not even be close to what happens for another.

Hang in there!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#3 Amanda Thorpe

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Posted 22 July 2008 - 12:55 PM

Hello,

I had the puffy hands and feet phase prior to the skin thickening and tighening. Puffy phase was approx May 06 to Feb 07 then the skin began to thicken from Feb 07 to August 07 and by that time I was so stiff and inflexible that I could hardly walk and could not even wash or dress unaided.

I hope this helps although you must bear in mind that despite commonalities everyone experiences scleroderma differently, it's almost a tailor made disease.

It's difficult to predict how long any phase will last or indeed what will come next. What will help you is what you have already found, the people of this forum who have a wealth of personal experience and encouragement to give you whatever phase you are in, however long it lasts and whatever comes thereafter.

Take care :blink:

Amanda
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#4 Sweet

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Posted 23 July 2008 - 06:51 AM

Hello Amanda and welcome!!!!

I'm so glad you've joined us. I'm sure you will be able to give wonderful support to others and we'll try to do the same for you!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#5 anonym4444

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Posted 23 July 2008 - 07:08 AM

Hi,

thanks.

I know that this disease is unpredictable by some sort...yet there are also tons of commonalities...and in the end it is called "slero" for hard skin...so I would expect that sooner or later everybody ends up with hard skin of some sort more or less except for those few exceptions that have only organ involvement with scleroderma sine...

Blame it on me being a technical driven person (engineer), but if I have statistics than I can very well myself see, where I am and what my chances are...if after 5 years I still do not have hard skin, and most people tell me it happened within 6 month after puffiness and the puffiness took 6 month as well...then I would say I sleep a lot better....if everybody (or the majority) tells me it took 2 years of puffiness and then it hardened over another 2 years ...well then I know that after only 1.25 years, there is still a lot to look forward too...and it aint over yet...

If the majority tells me it took only 2 month of puffiness and 2 months of tigthening...well then you also know that you are almost over the worst period for almost certain...

What does not fit for me yet is the fact, that there are indeed some PhD thesis out and they do find a lot of commonalities in many cases ...keep in mind I can read statistics...but yet they are not neccessarily matching with most stories I have seen and heard.

e.g. there is a nice one here on this site, which shows how quick major organ involvement happens with diffuse after start of skin changes....and most bad things happen for most people within years 2-3....so I am almost halfway over the period...if you count from the begin of ...well that is the interesting question....beging of first symptoms, slight puffiness, more puffiness, slight skin changes...real skin changes or what....that is the question....

I really do not know (absolutely ununderstandable for me as engineer) that this can not be displayed more clearly (even if it spreads a lot - nevertheless that does not matter...I can also show that with statistics...but instead there is completely confusing and contradicting information)....

Well...we will see...but without close and proper tracking, so much is sure, the cause and cure will be left to accident but not to directed effort. And that is a very poor outlook. Disappointing...
How do you ever want to find early signs if you do not track each and every person suspected, as they may turn to become real cases later...how do you want to find the exact start if people do not even remember themselves about the exact course after that long time when they finally are recognised with the disease and hopefully get quizzed to help other people earlier?

Thats what puzzles me...apart from my personal struggle....it is simply somthing incomprehensible for an engineer how little directed this is...(not the disease itself..but the efforts to fight it).

K.

#6 Clementine

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Posted 23 July 2008 - 10:53 AM

I'm married to an engineer, I get where you are coming from...LOL.

For me, edema was one of the first symptoms. I had this symptom for about ten years before being diagnosed. I have Diffuse Systemic Sine Sclerosis. I don't have skin hardening, just puffy hands. The reason my doctors categorized mine as diffuse is because within a week's time of having shortness of breath (last symptom until being diagnosed) I was extremely sick and in ICU.

I hope that helps, but um, I am sure it only confused you more. It does me.

Clem

#7 Bird Lady

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Posted 23 July 2008 - 12:37 PM

Hi, I had severe edema in hands and feet for about six months before the hardening began. My skin score went to a 23 and I had lung involvement. My doctor got me into the SCOT study and I had 12 Cytoxin IV treatments. At my most recent doctor visit he said my skin score was about a 3 and my breathing is much improved. Good luck to you, Birdman
Hugs for All,

Julie (Bird Lady)

#8 Karenlee

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Posted 24 July 2008 - 11:01 AM

It's hard to say exactly when the puffy sausage fingers started but I'd have to say it was at the very least a year before my knuckles got all thick. I remember one Thanksgiving, after a particularly salty meal they were really puffy and my nephew coined the phrase "sausage fingers". At that point I had no idea of any autoimmune issues, just raynauds but not CREST/Sclero/UCTD. It may have even started before that but I just hadn't paid much attention. Once the knuckle thickening started, it was pretty rapid. Went from one knuckle to both hands within less than a month. Then stopped.
Sorry for all the inconsistencies in our replies, but there really is no set guideline for this.

Karen

#9 Clementine

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Posted 24 July 2008 - 11:52 AM

Oh Karen, that is kind of funny that your nephew said that! I had puffy hands all through my 20s and 30s but I just assumed it was normal water retention or my freshman 15. My hands are still puffy, and I weigh next to nothing. They have improved since I've been managing the sclero symptoms but it sure is annoying, especially if I eat a salty chip...or a pickle.
xo,
Clem

#10 kramer57

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Posted 26 July 2008 - 01:50 AM

Hi,

My Sclero symptoms started in the early 1990's with acid reflux, then continued through the 2000's with Achalasia, "Asthma" , Bulging Disks and Arthritis in my back, Raynaud's and a Nodule on the Thyroid.

My skin wasn't affected until the puffy phase which began early 2007, around the time I got diagnosed with Diffuse Sclero. and I'm still getting puffier! My hands feel tight, it's hard to straighten my fingers & I can't move my thumb like I used to, around the base of the thumb is super-puffy. My arms feel puffy and stiff too, but I've gained 20 - 30 lb. in the past year so I don't know how much of the puffy/stiffness is from weight gain and how much is from the swelling.

Karen

#11 luvbnmom3

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Posted 27 July 2008 - 03:35 PM

I know they say "non-pitting" edema, so maybe mine was indirectly related at first... I had pitting edema, then just plain old edema/puffiness, it has bee about 2 years since the edema started & my skin is thickening everywhere, is tight on toes, soles of feet, calves, armpits, knees, face, & hands.

#12 Karenlee

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Posted 28 July 2008 - 04:48 AM

Wondering what pitting edema is? Can anyone explain?

Thanks!
Karen

#13 lizzie

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Posted 28 July 2008 - 07:06 AM

Hi Karen, Pitting edema (is called odema in the UK!) is when you press on a puffy /swollen area of skin and it leaves a dent (or pit) in the skin, which takes a while to disappear.

Lizzie

#14 luvbnmom3

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Posted 28 July 2008 - 07:40 AM

well, for example, when I lean my lef on something for a few seconds, it would leave a big dent where my lef was leaning on the table & the dent would be there hours later, or the first time it happened, I leaned on a plastic ladder & the tiny words molded into it were still on my leg, a couple hours later. You could push my eyebrows up with your finger for about 30 seconds & they would stay up, or I could just push on my skin some where for a few seconds with my thumb & it would leave a thumb print.

It's fun! :lol:

#15 RememberingToSmile

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Posted 28 July 2008 - 10:17 AM

K-

Don't know if you are still looking for experiences, but here is mine:

I have the diffuse variety of SSc... My hands swelled so that my rings didn't fit around March06 (along with raynauds and a small digital ulcer). My ankles swelled by the end of April. On prednisone, imuran and plaquenil, I was able to get my rings (and shoes) on again by July.

So 4 months of problem edema (2+ pitting edema) for me before the inflammation and later fibrosis started. Switching to Cellcept and 14 months I was back in really good shape.

When they tried to take me off the Cellcept, I relapsed. This time I mostly skipped the edema stage and went right to inflammation then skin fibrosis. The doctor set my peak skin score at 33 in Jan this year - and now I am reversing (scored 23 on last visit). I don't care what the score is - just that I am flexible again and skin contracture pain has stopped. Also - no early lung involvement. Life is good :-)


I enjoyed reading you posting about being an engineer and following the research.... I was there for a long time, then let it go. I think it was an important stage in my accepting this condition. I still read everything I can find, though. I just don't associate it as closely with my presentation. I also spend a lot of time reading coping advise from arthritis, myositis, pain and related orgs.

My sclero dr. says no two patients are the same so it is important to follow closely for a couple years to really understand the individual. I like that he always has multiple options laid out for me in case I stop responding to one or another med.

Good luck-
RTS

#16 Karenlee

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Posted 29 July 2008 - 01:17 AM

Lizzie,

Thanks for the clarification. So I have pitting edema. Didn't realize there was regular edema and pitting. Thought they were one and the same. So that explains the pillow lines on my face for 2-3 hours after I wake up :P

Also, when I use a pen or knife an fork, there are indents in my fingers. Another lovely side effect we have.

Karen