Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 I done really don't think of my PM now. My legs were really weak in 98 & 99. If I got down on the ground I had a real hard time getting up. Been on Prednisone since 98 on 10 to 60 mg. Have stayed at 20 mg for the last two years with out a flare. Have my CPK blood teat every month and it stays in the normal range. The PF is going to get me before the PM puts me in a wheel chair. I do use my power chair because of the 02 falling out of sight not my legs, P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: Biopsies todayTo: Breathe-Support Date: Thursday, January 8, 2009, 3:26 PM I realize that you have been on that downturn and from the day Polymyositis was first mentioned to me, you were the first one I thought of. I do hope that you're just having the best life still you can and getting the care and support you need. I know you've been one to keep going as much as possible and I admire that. Did your Polymyositis manifest itself fully limiting your mobility or did it sort of linger there with some symptoms but the main one remaining the PF? What did you do for the Polymyositis treatment wise? > > > > > > > > Hi everyone, > > > > I'm leaving in a little while to have my skin and my muscle biopsies > > > done. They are both very simple procedures so aside from a little > > > soreness I don't expect any problems. > > > > Wish me luck!! > > > > > > > > Beth in North Carolina > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 Thats sort of what I had gathered from listening to you. It's also a bit of the " worry about the most serious problems and not so much the others. " I know I have other issues like Kidneys for instance, but my nephrologist assures me they will outlast my lungs. I'm glad my doctors can talk realistically like that and recognize that the fact my kidneys would under normal circumstances fail in 10-20 years is pretty much irrelevant to me at this point. As to CPK, to a pulmonologist mine is very high. To a rheumatologist it is high, but not extreme. To the neurologist, its high but not bad at all. Main thing I'm doing is just watching. If it starts to spike upwards then I'll worry more about it. My rheumatologist makes me not exercise for three of four days before each time to see how low it can be. My high was 508. Mine, starting in August 2007 have been 392, 508, 328 (at that point he started the no exercise thing), 178, 271, 204, 278. I bet yours was much higher. Where did you peak? > > > > > > > > > > > > > > > > Hi everyone, > > > > > > > > I'm leaving in a little while to have my skin and my muscle > > biopsies > > > > > > > done. They are both very simple procedures so aside from a little > > > > > > > soreness I don't expect any problems. > > > > > > > > Wish me luck!! > > > > > > > > > > > > > > > > Beth in North Carolina > > > > > > > > Moderator > > > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 My first CPK in 98 was 3000+/- went on Pred. at 60 mg. Last three months have been in the 130's. My Doc calls it a flare if it is over 180, then he ups the Pred P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: Bruce PMTo: Breathe-Support Date: Thursday, January 8, 2009, 4:24 PM Thats sort of what I had gathered from listening to you. It's also a bit of the "worry about the most serious problems and not so much the others." I know I have other issues like Kidneys for instance, but my nephrologist assures me they will outlast my lungs. I'm glad my doctors can talk realistically like that and recognize that the fact my kidneys would under normal circumstances fail in 10-20 years is pretty much irrelevant to me at this point. As to CPK, to a pulmonologist mine is very high. To a rheumatologist it is high, but not extreme. To the neurologist, its high but not bad at all. Main thing I'm doing is just watching. If it starts to spike upwards then I'll worry more about it. My rheumatologist makes me not exercise for three of four days before each time to see how low it can be. My high was 508. Mine, starting in August 2007 have been 392, 508, 328 (at that point he started the no exercise thing), 178, 271, 204, 278. I bet yours was much higher. Where did you peak? > > > > > > > > > > > > > > > > Hi everyone, > > > > > > > > I'm leaving in a little while to have my skin and my muscle > > biopsies > > > > > > > done. They are both very simple procedures so aside from a little > > > > > > > soreness I don't expect any problems. > > > > > > > > Wish me luck!! > > > > > > > > > > > > > > > > Beth in North Carolina > > > > > > > > Moderator > > > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2009 Report Share Posted January 8, 2009 Yes, I don't think anyone would question that 3,000 is very high. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone, > > > > > > > > > > > > > > > > I'm leaving in a little while to have my skin and my muscle > > > > > > biopsies > > > > > > > > > > > > > > > done. They are both very simple procedures so aside from a little > > > > > > > > > > > > > > > soreness I don't expect any problems. > > > > > > > > > > > > > > > > Wish me luck!! > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Beth in North Carolina > > > > > > > > > > > > > > > > Moderator > > > > > > > > > > > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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