New list member, alot on my mind. . .

[Guest guest]

Hi Lou,

Welcome to our group and I hope you find some answers here. I've never had a problem with my heart but when I do get a bad flare, my chest gets very weak and it's difficult to say more than a couple of sentences. I think that's my lungs, though.....

You'll find that each and every one of us has Stills a little bit differently and we take which ever medication that works for us. I take Enbrel and MTX and it helps me greatly. I still have a lot of pain but it's bearable. Stills has affected my knees and right shoulder so I believe that one of these days I shall have to have them replaced. I'm holding out as long as I can, though.

I hope some of us can help you with your questions and I'm thinking it will be Caroline. She's our walking encyclopedia and knows it all. Gee......that didn't sound very nice, did it? Sorry, Caroline. I meant it in the most complimentary way..... )

I think the brochures that Bob (Old goat) has would be good to give to your friends, family and doctors. They kind of spell our disease out in understandable information. Ask him and give him your snail address and he'll be glad to send you some.

Keep in touch with us as we always like to know how one another is doing.

Mi. Carmen

[Guest guest]

Hi Lou,

Welcome to our group and I hope you find some answers here. I've never had a problem with my heart but when I do get a bad flare, my chest gets very weak and it's difficult to say more than a couple of sentences. I think that's my lungs, though.....

You'll find that each and every one of us has Stills a little bit differently and we take which ever medication that works for us. I take Enbrel and MTX and it helps me greatly. I still have a lot of pain but it's bearable. Stills has affected my knees and right shoulder so I believe that one of these days I shall have to have them replaced. I'm holding out as long as I can, though.

I hope some of us can help you with your questions and I'm thinking it will be Caroline. She's our walking encyclopedia and knows it all. Gee......that didn't sound very nice, did it? Sorry, Caroline. I meant it in the most complimentary way..... )

I think the brochures that Bob (Old goat) has would be good to give to your friends, family and doctors. They kind of spell our disease out in understandable information. Ask him and give him your snail address and he'll be glad to send you some.

Keep in touch with us as we always like to know how one another is doing.

Mi. Carmen

[Guest guest]

Welcome to the group Lou.I have had some Cardio involvement but not to the point your talkin about at least not yet so far just pericardis couple episodes that calm down with increase in prednisone.You have had this alot longer than me im just a preschooler compared to you Dx oct 2002,but has been goin very well for me the last 8 months knockonwood everyday.Good luck on finding some answers,i know i wasnt much help you take care. d.Canada

New list member, alot on my mind. . .

Hi, everybody.

Lou Novath here. I'm a 43-year-old man, unmarried, no children, no pets. I am number seven of a family of eight and, thank God, am the only inheritor of this genetic plague. My family is close-knit, which is a big help, but oftentimes, I feel utterly alone, fighting the fight of my life.

I've had Stills since age 5, though it was not discovered to be Stills until three years after onset. Thus far, the autoimmune gremlins have bent up my fingers, put a crackle in knees, elbows, wrists, and taken away my sight. My cardiovascular system has recently shown me what else Stills can do in the form of a slightly enlarged heart and blood vessels losing some elasticity. So now, I'm a tad hypertensive, have been thus for about three years. All the genetically weak parts show deterioration first. . . .

I hope you don't mind that I've started off with a bang. If I might be permitted to just out with a question to the group. Two years ago, I was tested positive for hypothyroidism. Not long after commencing synthetic thyroid medication--about six months, later test results showed me to have gone from hypothyroid to very hyperthyroid. My health care provider ended up tapering me off the synthetic thyroid hormone until I was totally off it, as I apparently had no further need of that sort of boost. Things went fine for alittle over a year. Again, in November of 03, a TSH test showed me to be very hypothyroid. The number was 10.95 (a high TSH reading means a low blood thyroxine level--in the case of primary hypothyroidism). Again, I was put on synthetic thyroid hormone. And again, or so it seems, my TSH level has plummeted from 10.95 to a mere decimal point figure--something like .6 or even less. So again, I'm in the process of being tapered off the synthetic hormone. Whether I finish by going totally off it again remains to be seen.

Is there anyone else who has had or is currently having this same thyroid hormone fluctuation? Is there anyone on the list who can help me come up with questions to ask my PCP?

For those of you who have confronted the cardiovascular aspect of Stills, are there any drug treatment options you might suggest that I talk with my PCp about? BTW. I am practicing fitness through aerobic training, stretching, and weight training. I am open to suggestion regarding alternative treatment therapy.

I can take the pain, but I can't stand not having energy to do what I want and need to do.

Thanks for your attention.

Best to all,

Lou Novathfenderwal@...

Whatever works!

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

Welcome to the group Lou.I have had some Cardio involvement but not to the point your talkin about at least not yet so far just pericardis couple episodes that calm down with increase in prednisone.You have had this alot longer than me im just a preschooler compared to you Dx oct 2002,but has been goin very well for me the last 8 months knockonwood everyday.Good luck on finding some answers,i know i wasnt much help you take care. d.Canada

New list member, alot on my mind. . .

Hi, everybody.

Lou Novath here. I'm a 43-year-old man, unmarried, no children, no pets. I am number seven of a family of eight and, thank God, am the only inheritor of this genetic plague. My family is close-knit, which is a big help, but oftentimes, I feel utterly alone, fighting the fight of my life.

I've had Stills since age 5, though it was not discovered to be Stills until three years after onset. Thus far, the autoimmune gremlins have bent up my fingers, put a crackle in knees, elbows, wrists, and taken away my sight. My cardiovascular system has recently shown me what else Stills can do in the form of a slightly enlarged heart and blood vessels losing some elasticity. So now, I'm a tad hypertensive, have been thus for about three years. All the genetically weak parts show deterioration first. . . .

I hope you don't mind that I've started off with a bang. If I might be permitted to just out with a question to the group. Two years ago, I was tested positive for hypothyroidism. Not long after commencing synthetic thyroid medication--about six months, later test results showed me to have gone from hypothyroid to very hyperthyroid. My health care provider ended up tapering me off the synthetic thyroid hormone until I was totally off it, as I apparently had no further need of that sort of boost. Things went fine for alittle over a year. Again, in November of 03, a TSH test showed me to be very hypothyroid. The number was 10.95 (a high TSH reading means a low blood thyroxine level--in the case of primary hypothyroidism). Again, I was put on synthetic thyroid hormone. And again, or so it seems, my TSH level has plummeted from 10.95 to a mere decimal point figure--something like .6 or even less. So again, I'm in the process of being tapered off the synthetic hormone. Whether I finish by going totally off it again remains to be seen.

Is there anyone else who has had or is currently having this same thyroid hormone fluctuation? Is there anyone on the list who can help me come up with questions to ask my PCP?

For those of you who have confronted the cardiovascular aspect of Stills, are there any drug treatment options you might suggest that I talk with my PCp about? BTW. I am practicing fitness through aerobic training, stretching, and weight training. I am open to suggestion regarding alternative treatment therapy.

I can take the pain, but I can't stand not having energy to do what I want and need to do.

Thanks for your attention.

Best to all,

Lou Novathfenderwal@...

Whatever works!

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.