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Post by jeffn on May 24, 2009 16:39:38 GMT -5
Or random thoughts while waxing the boat.
I notice that on "other" boards the subject of SD leveling off or going away on its own discussed now and again. My question I guess is for people in a support group or at least know others with SD, I don't know anybody and have never met another SD sufferer. On our old board there were also discussions about this topic. I know there are people here who have had SD a long time and are doing well. I also realize that it would be hard to find people that are on no meds at all, who would volunteer for that? . So for those that know other SD people - did their SD go away after a time? If it did at what level did it go away, no symptoms no progression, just did not get any worse and held constant, some symptoms got better and some still progressed, or another variation? I ask because when this question is asked someone always replies in the affirative that yes the SD will taper off. To me this disease seems so individual that I just don't see that as something we can count on. In my reading when I was first DXd two and a half years ago I often read the statement "An SD sufferer has a 40% chance of living ten years from time of DX" Now I read frequently that SD will go away on its own. Personally I think the majority of us fall somewhere between those extremes. Rheumy #2 told me that I might get my hands back in two or three years, that was good news at the time. He also wanted for me to wait five months to before beginning any meds. After I got home I sort of weighed what he told me and what I had read and decided to be more activist and look into treatments. I just was not comfortable waiting and I my condition was not wonderful to say the least. I know this is kind of rambling but when I read these threads I don't think I would be comfortable telling someone who was recently DXd that this all will go away. I might be able to say maybe. I just don't think it happens often enough to count on it. I ask because every time I read one of these threads it kind of makes me crazy because from what I see on the boards this stuff just does not go away by itself too often, if at all. I kind of want to yell "get out there and do your homework find a doc you trust and a course of treatment and get going!" I certainly may be wrong but I am curious.
What have you guys seen in your day to day SD experience both with yourselves and others.
Yes this is kind of a troll - but I am curious about this.
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Post by Cubby on May 24, 2009 17:50:27 GMT -5
I am out of town and trying to do this on my tiny little blackberry screen so forgive errors....
I have personally met 10 people with SD. Most (not all) had diffuse like me. All were actively and aggressively treating from date of diagnosis.
1 died at 3 years.
4 were, or now are, in remission.
A few are past 10 years and are fine, even if still treating.
I have has it 5 years and started getting better at about 2 years from DX due to aggressive treatments but that process has taken almost 3 more years. At 5 years, I am almost in remission.
I have read that LIMITED can "sometimes", but rarely, disappear with no treatment.
Everyone I know who got better, was told to STOP THE PROGRESSION as soon as diagnosed, because the longer u have it, the more risk of damaging internal organs.
Hope I answered everything.
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sammie
Junior Member
Posts: 64
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Post by sammie on May 25, 2009 11:44:06 GMT -5
This kind of tough for me to answer. My GI issues have never gone away. I also have periods of great fatigue and muscle and joint pain (which I have been experiencing for the last week). I also have Lupus so I don't know what part that my be playing in all this, The doc said he thinks it is the sclero that is prominent right now so I just don't know. I have to admit I am feeling somewhat down. I had just recovered and was able to use my arm again after the melanoma surgery, and ready to begin exercising again. This has been a real trial for me, I exercised several times this past week and it was very difficult both on the treadmill and doing yoga. So I really don't know what to think. Sammie
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Post by jeffn on May 25, 2009 18:11:02 GMT -5
I know that most of us here have done lots of research and poking around on the internet and everywhere else to find options for treatment for SD. Cubby and I went AP and Sammie I did remember you were on IVIG and was hoping you would check in. The thing I don't get is that if somneone were to ask you "does SD level out or go away by itself?" What would you guys say? I'm not saying it can't but how often does that happen? I would just have a problem, at least with the knowledge I presently have (or lack of knowledge) of SD, to say to someone new. "Oh yeah it will just go away". I don't want to go a far as saying that I would providing false hope but something along those lines I think. When I read threads like that I just cringe.
Sammie keep pluging away with the yoga and treadmill. It does get hard to do sometimes doesn't it. In the grand scheme I think it all helps.
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Post by kathsherman on May 25, 2009 19:57:44 GMT -5
In my most "humble" opinion....regardless of the treatment or it's success, I have experienced (over the past 16 yrs.), periods of "so-called" remission and periods of active symptoms. One example... After almost 5 yrs. post dx(1993), I was considered (medically, by several Dr.'s) well enough (stable and felt great) to get off all/any meds to try and conceive our second child. I had to prove/promise to the medical professionals, that I could maintain my health with little or no sclero symptoms, while not taking any meds.(possible dangers to a developing fetus) for at least 6 months prior to conception. Well, it worked and I was able to have our second and last child, along with the support of my Dr.'s because the pregnancy was still considered high risk. Scleroderma has it's peaks and valleys. I believe this crazy disease can slow or speed up, depending on several varying factors. Be sure to have aggressive medical care with a dr. familiar with sclero, taking care of yourself both physically/emotionally, diet and exercise and most importantly, trying to limit the stress in your life (good luck to ya'!). Looking back, my worst sclero "flare-ups" which mainly affected my raynauds (finger ulcers), occurred when I was exhausted from caring for our two daughters while they were toddlers/babies. I put the babies first, before my health, and sure enough, an ulcer would appear and my general health would suffer! Years have passed and I am currently taking a maintenance dose ( plaquenil) 3x weekly, low dose cozaar (raynauds), prilosec and viagra as needed(raynauds) and seem to be doing pretty well. I had a scare last summer, when my voice seemed "froggy" and frightened that I had lung issues for the first time, but discovered (after an onslaught of medical tests...lung ct, ENT scope, endoscopy for GI and echo heart/lung) that I had developed allergies. Thankfully, after taking a prescribed allergy med., my cough, breathing and voice cleared. I was soooo relieved! I also learned that I have to watch for increased reflux because motility can become an issue. I know that my health condition could change and try to be very careful to be aware of these differences and seek medical care. After having sclero for this long and enduring the vast SD struggles.... I still feel lucky to be a busy wife/Mom (12+16 yr.old girls...yikes), work part-time and volunteer hospice job weekly. I have learned to "try" and slow down, to take care of myself and listen to my body, especially if I begin to feel fatiqued.....I have a loving and supportive husband/family and friends....life is good.....for now...today! hey Jeff....you asked....after I went on so long, you're probably sorry Kathleen xoxo ;D
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sammie
Junior Member
Posts: 64
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Post by sammie on May 26, 2009 11:31:42 GMT -5
Hi Jeff, I did check in. My post is under the subject 'IVIG" Sammie
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Post by Peggy Bessee on May 26, 2009 14:29:13 GMT -5
Well, let me being by telling you what meds I take. Prilosec OTC, an OTC Calcium pill and Ibuprofen at bedtime. I haven't seen a rhuemy in 4-5 years. I can't even remember how long it has been. I have CREST and while I haven't had big problems, I still continue to have more and more red spots. Pretty soon I will be just one big red spot. I also have fibro and osteoarthritis. Whenever I go to a doctor for whatever reason, it's attributed to one of them. I've just recently retired after working 16 years and only retired because I'm 63 and could, not for medical reasons. When I read what everyone else is going through I sometimes hesitate to respond because I haven't had the problems that most of you have had. I also have days where I am really tired and just don't push myself, but I have also found that exercise does keep me going and do my stretches everyday to keep my neck and shoulders relatively painfree.
I hope this gives a look at what someone else goes through. I do believe that I am very blessed.
PeggyPansy
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Post by jeffn on May 26, 2009 16:02:23 GMT -5
Hi Jeff, I did check in. My post is under the subject 'IVIG" Sammie Yeah I know - I should have written "I was hoping you would check in and glad you did".
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Post by steve201 on May 26, 2009 16:54:03 GMT -5
Jeff Personally...I think you should go back to waxing your boat...or come over and wax mine!!.. ;D
on another note...I never heard of SD...not until I got it...and since then I've never met anyone with it except cubby!!...
I've heard of people and met people here on the internet but in person I haven't had the opportunity to meet anyone...
so..I really don't have any real data about whether it goes on it's own or not...for me..it was a fight...I fought every day since to stay alive...and then to recover from it......so...sorry..I can't help on this one....
Steve
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Post by jeffn on May 26, 2009 17:31:25 GMT -5
Jeff Personally...I think you should go back to waxing your boat...or come over and wax mine!!.. ;D When your boat requires wax don't you sell it and just buy a new one? ;D
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Post by isobelle44 on May 26, 2009 18:22:02 GMT -5
LOL
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Post by jeffn on May 26, 2009 18:55:33 GMT -5
Kathleen - Thanks for sharing your SD tale. No I am not sorry I asked. I was fortunate in that my son was pretty much grown up before my SD went active. Dealing with younger children must have been "exciting". I'm just trying to find that person that "it just went away" Perhaps there is somebody somewhere.
Peggy, don't feel bad that you don't feel bad. Does that make sense? Keep posting. So in your case things have been kind of gradual and a little of this and that, the SD never went away but has not been too aggressive. Good news for you for sure! I don't worry too much about the red spots - they don't hurt. Could do without the one on my nose though.
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Post by steve201 on May 26, 2009 21:16:35 GMT -5
Jeff Personally...I think you should go back to waxing your boat...or come over and wax mine!!.. ;D When your boat requires wax don't you sell it and just buy a new one? ;D ouch sure seems that way don't it!!...ever heard of 2 footitis???..ours was 7 footitis.... Steve
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Post by peggypansy on May 27, 2009 7:08:28 GMT -5
Jeffn, You have a red spot on the end of your nose too? I hate that one. Actually it's more than one now. I actually had someone ask if it was due to alcohol use.
PeggyPansy
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Post by klw1960 on May 27, 2009 7:09:31 GMT -5
I too never knew anyone or heard of SD before diagnosis although when researching before diagnosis it was the one autoimmune that I didn't want...since I have met 1 women who lives about 6 miles from me and was diagnosised about the same time. She is close to remission (3 years) and one of my friends mother just passed away at 83 and had it although she died from luekemia. I have met several women and one man with it at the Cleveland Clinic through my doctor. One woman has had it for 9 years and no remission, a couple are close to remission (diagnosised within the past 3-5 years) and one is regressing quickly but refuses to try treatments that will make her sick like IVIG or methotrexate because she doesn't want to lose her hair. Her unwillingness to try new things hasn't helped her. Dr. Chatterjee said typically most (not all) patients acheive some sort of remission within 3-5 years depending on how quickly they are diagnosised and start treatment. I am at 3 years of diagnosis and am stable but do not consider myself that close to remission. I was close to remission in December 2007, stopped IVIG and started regressing again by March 2008. I am now starting to slowly get back to where I was in December 2007....It would be nice to get to remission soon. This disease just whips the crap out of me. And Steve and Jeff, play nice! Karen
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