JJ-Knitter

Preventing Progression

10 posts in this topic

OK, big question, now that we have a diagnosis, what should we do to stay well, prevent flare-ups of symptoms and prevent progression? I'm especially interested in the last because I have the "sine" form and certainly don't want my ILD/PAH/ and GI stuff to get worse. For now I'm on a pretty benign medication regimen, but I'd like not to have to take any of the stiffer (sorry!) stuff.

 

JJ

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JJ,

Boy do you ask not only a very BIG question, but a very HARD question! How do we prevent progression? Every time I think the disease has leveled out, I get a new development. At least now, with all the regularly scheduled testing, I've caught the new symptoms early. So that would be my best suggestion is to get your 6 month checkups for all organs, periodic bloodwork for the major organs and CBC and stay in touch with your body. When you feel something new happening, make an appointment and check it out. In the meantime, live each day to its fullest. Accept the fact that you do have a disease or two (as in my case) and that it's just part of your job in dealing with it. Don't let it control you, but rather you control it. Maintain a great attitude about life, eat healthy, keep moving even though it may be slower and harder than before, maintain contacts with friends and family. I have rule that I go out to lunch with at least one friend each week. I love that rule! This week I have two lunch dates. WhooHoo!

Everytime I start feeling sorry for myself I see someone a lot worse off than me and it kicks me back to reality.

Attitude, attitude and did I mention - attitude :D

Use us to cheer you up on those down days and on those days that you feel good, help one of us cheer up. We're all in this together

Big, 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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Thanks, Janey. I'm scheduled for a GI consult tomorrow, to see a cardiologist who is familiar with SSc/PAH sometime in the next couple of months and in 3 months another round of PFT's. The rheumatologist is hoping to see if those will give a better idea of whether or if the beast is progressing. Just on prednisone and Norvasc now, so no follow-up blood tests are scheduled. Things might change once they have a better handle on the level of PAH.

 

Funnily enough, I'm doing the lunch thing too!

 

I'm one of those types that wants to know everything RIGHT now, wants to know what's down the line NOW~ That's the attitude I'm going to have to give up. :rolleyes:

 

This forum is so much help. Thanks to everyone.

 

JJ :D

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Hi,

 

This is the exact question I asked my rheumatologist when I was first diagnosed (with undifferentiated connective tissue disease) 5 years ago. He told me to walk at least 3-4 times a week. I do go to an exercise class at least 3 times a week. And I think the other big thing (not that it is the easies to do) is to avoid stress as much as possible as stress is known to exacerbate symptoms and cause flare-ups.

 

Warm wishes,

Heidi

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Hi JJ! I agree with the answers the ladies have given you. I'd like to stress Heidi's point that stress is not a good thing. I came out of remission last year due to the fact that I was planning this huge international conference at work and was stressed out of my mind. Thank goodness I'm all right now. I did, however, learn my lesson... Best, Claudia

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I've heard exercise is one of the biggest & best things we can do. I myself haven't been diagnosed with sclero, I have Fibro & Raynaud's Phenomenon (& occult connective tissue disease). I have seemed over the last year to get more & more symptoms that sound like sclero stuff, like the pads on my fingertips are tender & uncomfortable & they're getting pulled tight or something & my swallowing issues & stuff but who knows. Anyways, I worry all the time about preventing & slowing things down, especially since not having a diagnosis for many of my symptoms & not truly meeting the criteria for Fibro.....so I try to exercise as much as I possibly can....I think it's the best I have to offer myself.....& drinking lots of water....lol.

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Great Question. More specifically I want to know when to begin immunosuppression? This is an autoimmune disease, and we've seen everyone on the board talk about cell cept, cytoxan (very heavy stuff), methotrexate, etc.

 

Obviously the theory is these meds dampen the autoimmune response, and studies have proven this.

 

Of course they have side effects and can't be good for you as they are poison. So it would be great to see research on when to start immunosuppression?

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Hey guys, boy, you're asking the $64,000 questions... about progression and immunosuppressants. I can tell you that my disease has been active for about a year and a half, and I was diagnosed a year ago. It came on suddenly and aggressively - hard and fast. It hasn't seemed to slow down either. None of the immunosupressants have done anything for me except make me sick, so I told the doctor I was taking a break, no more drugs. He was ok with that... he had just been to a big sclero conference in Europe and the discussion was about exactly that issue. If the disease is self-limiting (in other words, it often burns out by itself after a period of time; we've seen this on this message board which is very encouraging)- then why poison the patient with the drugs? My personal big issue right now is that I am still taking steroids, which after a year are wreaking havoc with my body, and the only hope I have of getting off them are to go on another immunosupressant. It's always the same thing, risk vs benefits.... and we as the patient are the only one who can make that decision. I haven't yet made up my mind what to do, I really do NOT want to take either cellcept or cytoxan but they're my only choices right now. So, I am backed into a corner. No matter what amount of research is out there, each patient reacts differently. Some of us do well on MTX, some can't handle it, some do well on Imuran, some don't. My rheumatologist said there's an old saying in medicine, if you want to see if a medication will fail, give it to a sclero patient. One of the huge frustrations with this disease is that nobody can tell us what will happen! There's no logical progression, that a, b or c will happen in order or that they will EVER happen. It stinks. We want answers. The best we can do I guess is learn to accept that there aren't any, there are only guesses. Anyhow, I'll shut up for now! Good luck.Love, Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Mary!

Hi there! How have you been? I hope you are feeling better soon and can make a decision. It is a tough one. I am on Cellcept. I am interested in your opinion on Cellcept. I struggle with it too...wondering if I should even be on it. I have not improved according to tests, but I do feel better on it??

Thanks,

Jennifer

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