Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 In a message dated 1/7/00 11:10:35 PM Central Standard Time, sunnydaledeb@... writes: << Debbie >> Debbie, I don't know you, But I can try to help you! 1st, you say you have been on the Prednisone a couple years right? Why are your Doc's not trying to get you off with some type of DMARD's? like Metho, Arava, Immuran or ect....... 2nd. The ENT will NOT see anything in the ears, You need a NEW rheumy soon, I understand the low income thing but the Pred is only masking you real problems although you need the Pred till they get you off of it the " correct " (when pain is all gone) way and put your RP to bay for a while. I am just turned 33 on new years eve and it was a sad birthday, just thinking of the severe inner ear pain in this last year and what the long term Pred usage is doing to me and how it could kill me, my main goal is to get off the pred, I am on a great drug called Enbrel and I am on Dapasone and I am down to 40mg on my Pred (i have been on Pred 60-20mg) since Feb of 99 and its time for me to get off no matter what it takes because the pred can very much so after long term usage hurt you in many ways. My question to you is in the last couple years of you being on the Pred have any of your Doc's tried any Immuno's on you? (methotrexate ect....???) If not ask them why. Also why would they cut back the Pred when you hurt so much??? Without any other Med's in place. Also do you happen to know what you C-Reactive is or your SED Rate? If they are high and you are in bad pain and your Doc's want to cut back your Pred but have you on nothing else, Debbie its time no matter what to seek out better health care if you want to live, sorry for being so blunt that is the fact. I have lots of damage due to old doctors that sound just like yours do, for instance I now have Tricuspid insufficiency (my heart), ear damage, esophagus problems, etc., ... all in due to doctors NOT DOING ME RIGHT for so many years, I was told by Trentham and my Dr. none of this would have been as bad if the right med's were started sooner. I do care about you and I am being honest, and I believe we all need the best care out there if we are to get better. I completely understand the low income issue, but there must be other doctors who take that Ins, please seek them out and find one you feel safe with, 2-3 years of Pred with no Steroid spearing drug just is not right. I am a Phlebotomist and if you want to go over your labs with me I could help you with them, my # is Feel free to call any time. Please let us know how it goes and good luck to you, P. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 How long have you been on Enbrel and is it helping? Jo DEBBIE >In a message dated 1/7/00 11:10:35 PM Central Standard Time, >sunnydaledeb@... writes: > ><< Debbie >> > > >Debbie, I don't know you, But I can try to help you! > >1st, you say you have been on the Prednisone a couple years right? Why are >your Doc's not trying to get you off with some type of DMARD's? like Metho, >Arava, Immuran or ect....... > >2nd. The ENT will NOT see anything in the ears, You need a NEW rheumy soon, I >understand the low income thing but the Pred is only masking you real >problems although you need the Pred till they get you off of it the " correct " >(when pain is all gone) way and put your RP to bay for a while. > >I am just turned 33 on new years eve and it was a sad birthday, just thinking >of the severe inner ear pain in this last year and what the long term Pred >usage is doing to me and how it could kill me, my main goal is to get off the >pred, I am on a great drug called Enbrel and I am on Dapasone and I am down >to 40mg on my Pred (i have been on Pred 60-20mg) since Feb of 99 and its time >for me to get off no matter what it takes because the pred can very much so >after long term usage hurt you in many ways. My question to you is in the >last couple years of you being on the Pred have any of your Doc's tried any >Immuno's on you? (methotrexate ect....???) >If not ask them why. Also why would they cut back the Pred when you hurt so >much??? Without any other Med's in place. Also do you happen to know what >you C-Reactive is or your SED Rate? If they are high and you are in bad pain >and your Doc's want to cut back your Pred but have you on nothing else, >Debbie its time no matter what to seek out better health care if you want to >live, sorry for being so blunt that is the fact. I have lots of damage due >to old doctors that sound just like yours do, for instance I now have >Tricuspid insufficiency (my heart), ear damage, esophagus problems, etc., .... >all in due to doctors NOT DOING ME RIGHT for so many years, I was told by >Trentham and my Dr. none of this would have been as bad if the right med's >were started sooner. I do care about you and I am being honest, and I >believe we all need the best care out there if we are to get better. I >completely understand the low income issue, but there must be other doctors >who take that Ins, please seek them out and find one you feel safe with, 2-3 >years of Pred with no Steroid spearing drug just is not right. I am a >Phlebotomist and if you want to go over your labs with me I could help you >with them, my # is Feel free to call any time. Please let us >know how it goes and good luck to you, > > > P. > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2000 Report Share Posted January 9, 2000 Thank you for the help. I have been trying to put what you said into words to the doc's and I haven't been able to get across my point. I don't have another doc appointment for a few weeks, but, I will work on getting a few more answers, especially with the lab tests. Debbie DEBBIE > In a message dated 1/7/00 11:10:35 PM Central Standard Time, > sunnydaledeb@... writes: > > << Debbie >> > > > Debbie, I don't know you, But I can try to help you! > > 1st, you say you have been on the Prednisone a couple years right? Why are > your Doc's not trying to get you off with some type of DMARD's? like Metho, > Arava, Immuran or ect....... > > 2nd. The ENT will NOT see anything in the ears, You need a NEW rheumy soon, I > understand the low income thing but the Pred is only masking you real > problems although you need the Pred till they get you off of it the " correct " > (when pain is all gone) way and put your RP to bay for a while. > > I am just turned 33 on new years eve and it was a sad birthday, just thinking > of the severe inner ear pain in this last year and what the long term Pred > usage is doing to me and how it could kill me, my main goal is to get off the > pred, I am on a great drug called Enbrel and I am on Dapasone and I am down > to 40mg on my Pred (i have been on Pred 60-20mg) since Feb of 99 and its time > for me to get off no matter what it takes because the pred can very much so > after long term usage hurt you in many ways. My question to you is in the > last couple years of you being on the Pred have any of your Doc's tried any > Immuno's on you? (methotrexate ect....???) > If not ask them why. Also why would they cut back the Pred when you hurt so > much??? Without any other Med's in place. Also do you happen to know what > you C-Reactive is or your SED Rate? If they are high and you are in bad pain > and your Doc's want to cut back your Pred but have you on nothing else, > Debbie its time no matter what to seek out better health care if you want to > live, sorry for being so blunt that is the fact. I have lots of damage due > to old doctors that sound just like yours do, for instance I now have > Tricuspid insufficiency (my heart), ear damage, esophagus problems, etc., .... > all in due to doctors NOT DOING ME RIGHT for so many years, I was told by > Trentham and my Dr. none of this would have been as bad if the right med's > were started sooner. I do care about you and I am being honest, and I > believe we all need the best care out there if we are to get better. I > completely understand the low income issue, but there must be other doctors > who take that Ins, please seek them out and find one you feel safe with, 2-3 > years of Pred with no Steroid spearing drug just is not right. I am a > Phlebotomist and if you want to go over your labs with me I could help you > with them, my # is Feel free to call any time. Please let us > know how it goes and good luck to you, > > > P. > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 I agree with Debbie. I am considered HR for the surgery and prior gestational diabetes. I have opted for no testing other than ultrasound and I check my blood 4 times a day. I will not have the triple screen or an amnio. You have the choice in those matters as to what tests you allow. Hang in there!! Trina > Donna, > > Then tell them that. They will NOT do anything you don't want done unless > it would cause harm to either you or the baby NOT to do it and even then you > have to consent. > > If I do manage to conceive again, I already have a prenatal appointment set > up for the 2nd week in May with the best high risk group in Cincinnati. > > Debbie :-) > > Debbie > > I know HR OB watch things more closely. I just do not want any invasive > proceedures. I will take as many U/S as they want to give me though. > And in labor/ delivery, unless necessary, I do not want to be hooked up! > > I have set up a consultation appointment with teh HR OB, tomeet and talk to > her before I decide what to do. > > Thanks, Donna > > > Quote Link to comment Share on other sites More sharing options...
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