Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Hey there !! Just wanted to share with you the latest in my health battle. Went to the doctor yesterday for my regular once a month check up. Every month they do blood work to check my CPK level (my numbers, as I call it) and then at the next visit, he gives me the results from the previous visit. Keep in mind that 170 is normal according to my lab. My worst has been 1500 and my lowest around 250. Well ever since I have been back at work mine have been creeping upwards. In January, they were at or around 350 and at last months visit they were 580. Wellllllllllllllllllllllllll, at my visit yesterday, I was told that my numbers were at 1100 !!!! They havent been this high since this time last year. Needless to say, the doctor was very concerned because I have been having a lot of trouble with swelling in my feet and legs and also with my legs, arms and head falling asleep constantly. I might add that he took me off prednisone about two months ago and have only been on the Methotrexate. When we talked yesterday, he was this close (Im making my fingers very close together as I tell you this) to putting my ass on disability again and turning me once again into a pumpkin. He took me off the Methotrexate, put me back on the prednisone, and told me to come back in one week. I asked him to please let me give this a shot and see if it works before placing me under house arrest again and he agreed. Soooooooooo, I have 7 days to bring these numbers down to a reasonable level or my goose is probably cooked. This ends the never ending saga of and her fight to remain a valuable part of Glatting and society. Soooooooo, keep your fingers crossed (and everything else you have two of) !!!!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Hi .... Is this the same doctor who didn't fill out the paperwork or said you were not disabled and you lost part of your state disability? Guess this means for the next 7 days you'll be in bed.... I sure don't know of any other way to get those numbers down except with a lot of rest and Prednisone. How much Prednisone are you going to start taking? As much as all of us hate the drug, it does come in very handy to get things back in line. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2001 Report Share Posted June 1, 2001 Hey :-) I sure hope you can hang in there until your appointment with the new doctor......gosh, it's time for you to start feeling better, instead of worse! Don't let those numbers go any higher.......OK? I know you can get this thing under control. Here are a couple of articles that came out of the recent microbiologist convention in Orlando. You guys know me.....I tend to focus on the infectious cause to the rheumatic diseases.....maybe I should have been a microbiologist LOL Anyway, the more I learn the more I'm sure of the connection..... (to get the links to work, you either have to sign in as a new user, or use my username of ConnieHache and password that they gave me is 78233493) http://news.bmn.com/conferences/list/view?fileyear=2001 & fileacronyn=ASM & fileday=day1 & pagefile=story_2.html "Bad bacteria toy with immune defenses" http://news.bmn.com/conferences/list/view?fileyear=2001 & fileacronyn=ASM & fileday=day1 & pagefile=story_7.html "New strategy shows promise for disrupting host-pathogen interaction" http://news.bmn.com/conferences/list/view?fileyear=2001 & fileacronyn=ASM & fileday=day1 & pagefile=story_5.html "New tactics needed to fight fungi and TB" (TB is a mycoplasma, if I'm not mistaken) In the meantime, you can be sure that I'll cross everything that I have. I'll tie myself into a pretzel if it will help you! Take care and lots of hugs, Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 Freak gave me the paper work I needed this past Thursday and I contacted disability and they will hopefully be reopening my file so I can once again get my check. He has me taking 20 mg/day and will see what happens this coming Thursday when I go back. Went bowling last night and our team took first place !! I was hurting like hell when we started but seemed to loosen up as the night went on. I was surprised that we did so well. I told Freak I was going and he had no objections. Will spend the rest of the week being a couch potato !!!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 , Dang, I'm sorry you are flaring--what a bummer! What I don't get is why he took you OFF the Methotrexate? Last year when I was so flared she upped my Prednisone to 40mg and upped my Methotrexate as well. I was on big bang dosages of both for about 3 months. It might be something to check into. I'm still on both... Ann-Marie _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2001 Report Share Posted June 2, 2001 ...I haven't been here in a very long time, so I know I'm jumping in - in the middle of your conversations---but have you ever tried Imuran?? Methotrexate didn't work for me and Imuran worked wonderfully...Just a thought...I have had PM since 1988 and I have had CPK done every month since then...My worse was over 15,000 and my best has been 63...This past Jan. 1st, 2001 was the first time in years that I have NOT been on something for my last flare (which was in 09-95)...Now, I wait and watch for the next flare to show it's miserable head... Jacqui-MN > > > Hey there !! Just wanted to share with you the latest in my health battle. > > Went to the doctor yesterday for my regular once a month check up. Every > > month they do blood work to check my CPK level (my numbers, as I call it) > > and then at the next visit, he gives me the results from the previous > > visit. Keep in mind that 170 is normal according to my lab. My worst has > > been 1500 and my lowest around 250. Well ever since I have been back at > > work mine have been creeping upwards. In January, they were at or around > > 350 and at last months visit they were 580. Wellllllllllllllllllllllllll, > > at my visit yesterday, I was told that my numbers were at 1100 !!!! They > > havent been this high since this time last year. Needless to say, the > > doctor was very concerned because I have been having a lot of trouble with > > swelling in my feet and legs and also with my legs, arms and head falling > > asleep constantly. I might add that he took me off prednisone about two > > months ago and have only been on the Methotrexate. When we talked > > yesterday, he was this close (Im making my fingers very close together as I > > tell you this) to putting my ass on disability again and turning me once > > again into a pumpkin. He took me off the Methotrexate, put me back on the > > prednisone, and told me to come back in one week. I asked him to please > > let me give this a shot and see if it works before placing me under house > > arrest again and he agreed. Soooooooooo, I have 7 days to bring these > > numbers down to a reasonable level or my goose is probably cooked. This > > ends the never ending saga of and her fight to remain a valuable > > part of Glatting and society. Soooooooo, keep your fingers crossed > > (and everything else you have two of) !!!!! > > > > > > > My cats knead me !!!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 I agree 100% Vicki regarding the cpk level and the normal range issue. Hell, nothing is normal anymore or if it is, what's normal for one person can certainly be abnormal for someone else. All I know is I hurt so bad now that I am back on the pred. and once again, my neck and shoulders feel like someone beat them with a bat !!! Hopefully it will ease up. My hubby and boys gave me a gift certificate for an hour full body massage and i think I am ready to use it !!! The only parties Ill be attending in the near future will be on my couch with my blanket and pillow !!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2001 Report Share Posted June 3, 2001 Hi .... I'm beginning to think that once you have a disease like this... the normal range for your cpk shouldn't come into play. The way I look at it, if your in the normal range and each month you keep going up that alone should say something. We all know that having this disease we're not out running marathons to elevate the cpk. If it's going up ... regardless of the normal range .... it should signal the doctor something is going on. What does everyone else think about this? I can't understand why he took you completely off the prednisone when you've never seemed to stay in the normal range. An taking you completely off the Methx is very strange. Your body will have to work wonders in one week to bring down the cpk level. No parties for you kiddo. Hugs Vicki Quote Link to comment Share on other sites More sharing options...
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