Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 We attempted to deliver this message to you with HTML formatting. However, your e-mail program does not support HTML-enhanced messages. Please go to your E-mail Settings for this group and change your E-mail Preference to " Text only " . http://groups.msn.com/parentsofkidsadultswithautism/_emailsettings.msnw MSN Groups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Great news Randal!!!! I'm so glad to hear you are feeling good! Tootles, Carey in NJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hi Randal, What a wonderful lab report you got !!! Now, be patient with the Prednisone reduction. The one mg. a month sounds just about right to me. That is how I did it and I had no problem what so ever. When I got down to five mgs., I decreased by only one half a mg. a month as I just wanted to make sure I would never have to go up higher, ever !! It was my own choice and it worked for me. I can hear your "yippees" way over here !! Mi. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Great news on the bloodwork Randal,hope your prednisone reduction goes smoothly. d.Canada Good News Greetings, Fellow Stilligans!I met with my Rheumatologist yesterday afternoon and got some fantastic news. For the first time since January, my WBC is normal! The only concern he had for me was that my potassium levels were slightly elevated, but that's because I had been taking a potassium supplement. He ordered me off of the supplement, and designed my new prednisone taper schedule. Starting July 21st, I'll drop down to 9MG of Prednisone per day and I'll drop 1MG per month after that! Wooo Hooo! Also, I can stop taking the Atenolol I've been on since February! Yeee Hawww! And within a month I should be off of the Benadryl as well! YIPPEE!!!Soooooo ... If you couldn't tell, I'm a bit excited! I feel like I have a new lease on this life thing! And I feel like I'm getting a reward for being patient and always trying to do the next right thing.Thanks for letting me share this good news with you! I hope we all get good news like this very soon!Take care, and have a great day!RandalVisit 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hey great news Randal, I have to agree that sometimes sticking with the program and having patients pays off. My Rheumey White Coat has in every one of his little office rooms these charts on reducing prednisone. He uses a very slow and deliberate reduction and it seems to work. I also think that a strong desire and determination helps also. Just ask Carmen, YES? This stuff about the folic acid. It is not the prednisone it is for, it is the MTX that is is for. And it seems to help with keeping down the sores in the mouth that MTX can sometimes bring on. My Rheumey White Coat had me on 1mg folic acid a day, and then I started getting some little mouth sores and he increased me to taking 3 mg of folic acid pills a day. I remember him saying I could go and buy them over the counter, but that could get stronger and probably better grade of folic acid tablets by getting a prescription. Also get a little help from insurance that way on the things. The 3 mg a day of folic acid did the trick for me. I also try to eat BROCOLI Carmen, Yes !!!!! Randal, I have been prednisone free now for around a year and a half. Have not needed to return to the ROIDS. Yippie !!!!! My MTX dose is reduced right now to 4 little pills a week, lets see, that is 10mg. That is down from 7 pills that I was taking. I have an appointment coming up soon with the Rheumey White Coat, so I need to go see the Blood Sucker maybe a week before. I better put that on my "to do list". I am hopeing that I can maybe further reduce the MTX or maybe, just maybe, STOP the MTX. Then it is "MARGARITTAVILLE" , Carmen, YES!!!!! Dan Montana "fishing was slow on the river today" ;-( Good News Greetings, Fellow Stilligans!I met with my Rheumatologist yesterday afternoon and got some fantastic news. For the first time since January, my WBC is normal! The only concern he had for me was that my potassium levels were slightly elevated, but that's because I had been taking a potassium supplement. He ordered me off of the supplement, and designed my new prednisone taper schedule. Starting July 21st, I'll drop down to 9MG of Prednisone per day and I'll drop 1MG per month after that! Wooo Hooo! Also, I can stop taking the Atenolol I've been on since February! Yeee Hawww! And within a month I should be off of the Benadryl as well! YIPPEE!!!Soooooo ... If you couldn't tell, I'm a bit excited! I feel like I have a new lease on this life thing! And I feel like I'm getting a reward for being patient and always trying to do the next right thing.Thanks for letting me share this good news with you! I hope we all get good news like this very soon!Take care, and have a great day!RandalVisit 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Montana Dan,....... I would have thought a good friend would wait for another good friend regarding reducing the MTX. If your doctor does let you say bye-bye to it, please oh please, don't tell me. I will be soooo jealous! I go to the vampire's house tomorrow to give him some blood. Seems like I always get the vampire with the dull teeth... ( Stilligans taking MTX......what is the test for the liver? Do you get it checked regularly? I'd like to review my old lab tests and see if my Rheumatologist is checking to see that the MTX isn't affecting it in an adverse way. I really don't know what all those lab letters mean. Mi. Carmen Oh.....my husband told me tonight that men should not eat broccoli, asparagus or spinach.......something to do with uric acid???? Is that true? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 SGOT and SGPT are liver function tests that they should be checking while you are on mtx..........and i dont know the answer about green veggies and uric acid for men, sorry luv and hugs, Aj Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2004 Report Share Posted July 9, 2004 I envy you Randall! I hope it is smooth sailing from here on out for you! Good News Greetings, Fellow Stilligans!I met with my Rheumatologist yesterday afternoon and got some fantastic news. For the first time since January, my WBC is normal! The only concern he had for me was that my potassium levels were slightly elevated, but that's because I had been taking a potassium supplement. He ordered me off of the supplement, and designed my new prednisone taper schedule. Starting July 21st, I'll drop down to 9MG of Prednisone per day and I'll drop 1MG per month after that! Wooo Hooo! Also, I can stop taking the Atenolol I've been on since February! Yeee Hawww! And within a month I should be off of the Benadryl as well! YIPPEE!!!Soooooo ... If you couldn't tell, I'm a bit excited! I feel like I have a new lease on this life thing! And I feel like I'm getting a reward for being patient and always trying to do the next right thing.Thanks for letting me share this good news with you! I hope we all get good news like this very soon!Take care, and have a great day!RandalVisit 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 That's great news Sharon! Having a good and compassionate doctor seems to make the world of difference. Luv anne Good News > Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group. > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 That's great news Sharon! Having a good and compassionate doctor seems to make the world of difference. Luv anne Good News > Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group. > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 That's great news Sharon! Having a good and compassionate doctor seems to make the world of difference. Luv anne Good News > Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group. > Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Hi, Sharon! That's the best new you could hear. I, too, have a great Doc who has a similar mindset as yours. I feel truly sorry for those of us who have lousy Docs, because we are all pretty knowledgeable and we all deserve the best treatment! Let us know as you progress with tx. > > Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group. > Sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Hi, Sharon! That's the best new you could hear. I, too, have a great Doc who has a similar mindset as yours. I feel truly sorry for those of us who have lousy Docs, because we are all pretty knowledgeable and we all deserve the best treatment! Let us know as you progress with tx. > > Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group. > Sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Joyce, does he have you on the shots to help with you wbc? I hope you can stay on the treatment. I'll keep you in my prayers. Sharonjoyceann silva wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Joyce, does he have you on the shots to help with you wbc? I hope you can stay on the treatment. I'll keep you in my prayers. Sharonjoyceann silva wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Rick I feel so lucky to have found this doctor, and so fortunate that he would take me as a patient. I guess I found out that my last doc was not really up on things as far as treatment goes. I will keep everyone informed on my treatment. Thanks SharonRick Kipp wrote: Hi, Sharon! That's the best new you could hear. I, too, have a great Doc who has a similar mindset as yours. I feel truly sorry for those of us who have lousy Docs, because we are all pretty knowledgeable and we all deserve the best treatment! Let us know as you progress with tx.>> Hey, I hope everyone is having a great Valentine's Day. I had my > first visit with the Doc at the University Center. He is a Liver > Specialist and does a lot of Hep C research. He was so positive and > wants to get me started back on treatment. He felt that there were > ways that he could keep me on treatment, shots to keep the white cell > count up and hopefully the platelets will cooperate but if not then we > can transfuse. He really felt that it was important to get rid of > this virus, and that I had already had to wait to long. I know that > the treatments are rough, but I am willing to give it all I got once > again and beat this thing. He talked to me about a couple of new meds > that are still a year to 18 months from being approved, and he felt > like I didn't have that long to wait. Thanks for listening to me, > this is such a positive support group.> Sharon> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Jackie, that is the med that my new doc said he would put me on when and if my wbc's start to drop. But the other doc I had on treatment in October wouldn't give me the shots either. SharonJackie on wrote: WHY is he NOT giving you Neupogen??? That is for the white cells and there is no reason for him NOT to give that to you if you need it! joyceann silva <mepurplegee> wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Jackie Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 Jackie, that is the med that my new doc said he would put me on when and if my wbc's start to drop. But the other doc I had on treatment in October wouldn't give me the shots either. SharonJackie on wrote: WHY is he NOT giving you Neupogen??? That is for the white cells and there is no reason for him NOT to give that to you if you need it! joyceann silva <mepurplegee> wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Jackie Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 well its 'standard of care' for drug induced anemia of white blood cells,, procrit is for red blood cells,, and all these dang docs should be rx'ing this when we get anemic! Sharon McCarty wrote: Jackie, that is the med that my new doc said he would put me on when and if my wbc's start to drop. But the other doc I had on treatment in October wouldn't give me the shots either. SharonJackie on <redjaxjm> wrote: WHY is he NOT giving you Neupogen??? That is for the white cells and there is no reason for him NOT to give that to you if you need it! joyceann silva <mepurplegee> wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Jackie Never miss a thing. Make Yahoo your homepage. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2008 Report Share Posted February 14, 2008 well its 'standard of care' for drug induced anemia of white blood cells,, procrit is for red blood cells,, and all these dang docs should be rx'ing this when we get anemic! Sharon McCarty wrote: Jackie, that is the med that my new doc said he would put me on when and if my wbc's start to drop. But the other doc I had on treatment in October wouldn't give me the shots either. SharonJackie on <redjaxjm> wrote: WHY is he NOT giving you Neupogen??? That is for the white cells and there is no reason for him NOT to give that to you if you need it! joyceann silva <mepurplegee> wrote: great, i just a call from my dr my wbc are still decreasing and allways says we;ll keep treating, but theres that hint of could end it at any time, thats the feeling i get, like we will just see how the labs are next week, well good for you, you go girl!!"sharon.mccarty" <sharon.mccarty> wrote: Hey, I hope everyone is having a great Valentine's Day. I had my first visit with the Doc at the University Center. He is a Liver Specialist and does a lot of Hep C research. He was so positive and wants to get me started back on treatment. He felt that there were ways that he could keep me on treatment, shots to keep the white cell count up and hopefully the platelets will cooperate but if not then we can transfuse. He really felt that it was important to get rid of this virus, and that I had already had to wait to long. I know that the treatments are rough, but I am willing to give it all I got once again and beat this thing. He talked to me about a couple of new meds that are still a year to 18 months from being approved, and he felt like I didn't have that long to wait. Thanks for listening to me, this is such a positive support group.Sharon Never miss a thing. Make Yahoo your homepage. Jackie Never miss a thing. Make Yahoo your homepage. Jackie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.