Does SD level off or go into remission by itself?

[jeffn]

Hey mum good to see you! Thanks for coming over to check us out.

I am not sure about all this either as thats why I started the thread. I hear of the leveling out theory but could you in good conscience tell anyone with early SD to just wait it out? I couldn't. I began AP about a year in and would say that I stopped getting worse and seemed to stabilize almost right away. Once I got my GAVE and resulting anemia under control I began to feel better. So for me I don't know - did the mino do it or the natural course of the disease? Whatever reason I'll take it. Of the people that have posted on this thread Shirley has had SD the longest and her posts a very informative. She has had long trip with this stuff. From what I read my impression is that progression may slow down in some areas but not in others sort of a mixed bag. I am not entirely sure what to think.

[steve201]

welcome to the zoo Mum....
there is alot of information in the internet but unfortunately some of it is incorrect in my opinion....this part of leveling out without doing anything in my experience is really taking a gamble on your life...about 9 yrs ago when I was first dx'd with it...I got worse and continued to get worse..doc's didn't give me a snowballs chance in hell.....even my rhummy yesterday was all grins after 9 yrs and keeps saying how wonderful I'm doing concidered they didn't think I'd survive.....so...would I ever tell someone to sit tight and things will get better??..not only no but hell no!!...I tell anyone that will listen to me to be aggressive....be pro-active.....do research.....find and interview different doc's that are willing to think out of the box to help you...not help their ego's........
I also tell people to start a binder and put their labs/reports/research all in this binder...any questions..write them down...medications..stick that in there...take the binder to every doc's appt you have...don't leave until they answer every question and satisfy you..the patient.....get the meds that works for you...if it isn't doing anything ...ask for something else....then do Physical therapy...anything ...get up and off the couch....but just don't sit there and think about the hurt...

ok...off my soap box....

Steve

[mumof3]

Hi Jeff, Nice to hear from you. Hope you are well.

Hi Steve, That's good advice. Thank you.

I agree. It is such a scary disease. I wouldn't want to ride it out and do nothing. I am attacking mine aggressively with AP. So far I am doing well. I just wondered if after a few years things settled down on their own. I guess it can for some but there's no guarantees.

[Cubby]

MUM: Welcome to the gang!!!! This question is asked a lot, especially here. In my case, I can't tell you if it leveled off. I have had this for 5 years. I got this in March 2004. Got on the AP in est October, 2005 (in addition to photopheresis). The progression stopped within a few months. The rest of the time, it started regressing and now, I have almost no symptoms. (The last hardness on my forearms went away in the Fall of 2008--still have a little in my forefingers). BUT, all this time, I was doing Photopheresis (since August 2005) and AP, so in my case, there was no leveling off, just getting better.

My friend, had it 3 years, it never did level off, got worse and worse--she took 50 pills a day and none of them helped (she was NOT on AP or Photopheresis) and she died. It was awful. So from those I have met in person and those I have talked to, some get worse and worse till the end, some, it seems to slow down after 5--10 years--WITH TREATMENT, especially chemo drugs and others who are doing something that stops the progression are like me.

One of our ladies, who wrote above, has had it for 27 years, and some of that was with little or no treatment.

So to answer your original question, years 1 was getting bad, year 2 was AWFUL, spent a lot of 2005 and early 2006 in bed. However, by early 2006 (year 2), my AP and Photopheresis were working, so I started getting better really quickly.