Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 Maggie, how much Epler did you take? Phyllis On 2/9/2012 6:44 PM, maggiekat7 wrote: BTW, Dr. Grim, read up on it and yes, I have been dashing since 2007. > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 I am only on Inspra 50mg. I am dashing but my bp still fluctates from 140/80-160/85. Maybe I need more Inspra. My insurance wont cover it so I have to pay for it and it is expensive. I have joined Weight Watchers and lost 20 lbs but weight loss had no effect on my BP. Phyllis On 2/9/2012 6:58 PM, maggiekat7 wrote: 1 50 mg. tablet. > > > > > > Just thought I'd update my saga...and a bit of success of late. I > > was able to convince Doc 1 (endo) to write a letter of referral to NIH > > where they are providing free evaluation and treatment of PA and other > > endocrine issues if you participate in their clinical trial protocol. > > I read about it and signed on. None of my other drs. wanted to write > > the letter or work with NIH, so that was a minor miracle to get one to > > write the letter, and I did. Yippee! > > > > > > The day prior to NIH calling to invite me to particpate, I took a > > dose of Epler and within 24 hours, my BP had a below normal reading. > > First I've seen in months. > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start > > verapamil and hydralazine until the eval since it will mess with the > > labs. So, I called the referring doc and asked her to write it since > > NIH can't since I am not yet their patient. She said since she wrote > > the letter, she transferred my care of BP to them and she did not want > > to write the script. So I called the cardiologist, who was confused, > > but finally called me back and called the NIH doctor, called me back > > in full support of the NIH plan and called in the scripts. > > > > > > So, now, I am set to get a good evaluation, and have a doctor > > willing to work with them and I am sooo relieved. I obviously have PA, > > even have the official diagnosis with cardio, but have no good labs > > and no eval of tumors. Now I will and soon can have a treatment plan. > > A miracle and bit of success, I think. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 Great keep us posted. CE Grim MDOn Feb 9, 2012, at 5:41 PM, wrote: That's great! I sent my PCP an e-mail and she responded that she would be happy to do the referral as long as I understood it was on my dime! (I told her it was cheaper to do it in Bethesda than locally! $96 copay & milage for each visit X 3 vs $202 R/T air unless I decide to drive!) Read the fine print if the government offers you "free healthcare" - It cost me over $400 to get Eplerenone approved! > > Just thought I'd update my saga...and a bit of success of late. I was able to convince Doc 1 (endo) to write a letter of referral to NIH where they are providing free evaluation and treatment of PA and other endocrine issues if you participate in their clinical trial protocol. I read about it and signed on. None of my other drs. wanted to write the letter or work with NIH, so that was a minor miracle to get one to write the letter, and I did. Yippee! > > The day prior to NIH calling to invite me to particpate, I took a dose of Epler and within 24 hours, my BP had a below normal reading. First I've seen in months. > > However, the dr. at NIH wanted me to discontinue Epler and start verapamil and hydralazine until the eval since it will mess with the labs. So, I called the referring doc and asked her to write it since NIH can't since I am not yet their patient. She said since she wrote the letter, she transferred my care of BP to them and she did not want to write the script. So I called the cardiologist, who was confused, but finally called me back and called the NIH doctor, called me back in full support of the NIH plan and called in the scripts. > > So, now, I am set to get a good evaluation, and have a doctor willing to work with them and I am sooo relieved. I obviously have PA, even have the official diagnosis with cardio, but have no good labs and no eval of tumors. Now I will and soon can have a treatment plan. A miracle and bit of success, I think. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 Right weight loss without reducing sodium intake will not lower BP in most.Ask your Dr to measure a spot urine for Na, K and creatinine and we can estimate you sodium and potassium intake to see if you have DASHed to the max before increasing Inspra. Or you can find a lab that will do it for you without a Dr's orders. But ask how much it will cost first.CE Grim. On Feb 9, 2012, at 6:22 PM, Phyllis wrote: I am only on Inspra 50mg. I am dashing but my bp still fluctates from 140/80-160/85. Maybe I need more Inspra. My insurance wont cover it so I have to pay for it and it is expensive. I have joined Weight Watchers and lost 20 lbs but weight loss had no effect on my BP. Phyllis On 2/9/2012 6:58 PM, maggiekat7 wrote: 1 50 mg. tablet. > > > > > > Just thought I'd update my saga...and a bit of success of late. I > > was able to convince Doc 1 (endo) to write a letter of referral to NIH > > where they are providing free evaluation and treatment of PA and other > > endocrine issues if you participate in their clinical trial protocol. > > I read about it and signed on. None of my other drs. wanted to write > > the letter or work with NIH, so that was a minor miracle to get one to > > write the letter, and I did. Yippee! > > > > > > The day prior to NIH calling to invite me to particpate, I took a > > dose of Epler and within 24 hours, my BP had a below normal reading. > > First I've seen in months. > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start > > verapamil and hydralazine until the eval since it will mess with the > > labs. So, I called the referring doc and asked her to write it since > > NIH can't since I am not yet their patient. She said since she wrote > > the letter, she transferred my care of BP to them and she did not want > > to write the script. So I called the cardiologist, who was confused, > > but finally called me back and called the NIH doctor, called me back > > in full support of the NIH plan and called in the scripts. > > > > > > So, now, I am set to get a good evaluation, and have a doctor > > willing to work with them and I am sooo relieved. I obviously have PA, > > even have the official diagnosis with cardio, but have no good labs > > and no eval of tumors. Now I will and soon can have a treatment plan. > > A miracle and bit of success, I think. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2012 Report Share Posted February 9, 2012 It is generic and I think pretty cheap if prescribed for high blood pressure. Do not mention primary aldosteronism.Did spiro not work?CE Grim MDOn Feb 9, 2012, at 10:08 PM, wrote: Phyllis, why won't insurnce pay for Inspra? > > > > > > > > > > Just thought I'd update my saga...and a bit of success of late. I > > > > was able to convince Doc 1 (endo) to write a letter of referral to > > NIH > > > > where they are providing free evaluation and treatment of PA and > > other > > > > endocrine issues if you participate in their clinical trial protocol. > > > > I read about it and signed on. None of my other drs. wanted to write > > > > the letter or work with NIH, so that was a minor miracle to get > > one to > > > > write the letter, and I did. Yippee! > > > > > > > > > > The day prior to NIH calling to invite me to particpate, I took a > > > > dose of Epler and within 24 hours, my BP had a below normal reading. > > > > First I've seen in months. > > > > > > > > > > However, the dr. at NIH wanted me to discontinue Epler and start > > > > verapamil and hydralazine until the eval since it will mess with the > > > > labs. So, I called the referring doc and asked her to write it since > > > > NIH can't since I am not yet their patient. She said since she wrote > > > > the letter, she transferred my care of BP to them and she did not > > want > > > > to write the script. So I called the cardiologist, who was confused, > > > > but finally called me back and called the NIH doctor, called me back > > > > in full support of the NIH plan and called in the scripts. > > > > > > > > > > So, now, I am set to get a good evaluation, and have a doctor > > > > willing to work with them and I am sooo relieved. I obviously have > > PA, > > > > even have the official diagnosis with cardio, but have no good labs > > > > and no eval of tumors. Now I will and soon can have a treatment plan. > > > > A miracle and bit of success, I think. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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