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Gloria
Member
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Posted: Wed May 14th, 2008 16:02 |
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Hi Jeannine,
I hope you can help me...So far I have not gotten any of my physicians to go ahead with the Marshal Protocol...but I'm not giving up. I have been able to somewhat keep my condition under control...just don't know what surprise I will experience each day. My current situation is this. I have been on a dosage of 10 mg. of Valium as needed for the last 15 years (from when I was diagnosed with Sarcoidosis). I find it helps with the nausea, stops the vomiting before it starts and helps with the shakes and hyperactivity from all the prednisone and the steroid inhalers. Medicare took Valium off their formulatory list last year. I found that the generic does not work at all. In fact I was in the hospital a few weeks back where they were giving me breathing treatments every 4-6 hours. They gave me a generic valium to calm down the shakes and were shocked that it did nothing. I told them it wouldn't work...now they know. Anyway...to get to my point. After making numerous phone calls and writing letters to Medicare, our legislatures and Roche (who makes Valium) I finally got a response from Roche. They told me they have a list of conditions/diagnosis that will allow various Roche medications, including valium to be dispensed. At present their list includes HIV, transplants and some other conditions. They have nothing on Sarcoidosis. I am already getting a note from one of my pulmonary doctors expressing his feeling that valium should be a medication dispensed to people with Sarcoidosis, taking prednisone and other steroid inhalers. I was hoping I could get a note from you and anyone else you can think of to include in my response to Roche. Anything you can do would be greatly appreciated. If you can suggest any contacts for me to write to that would be great too. Thank you for anything you can do.
Hi Lottie,
I know I'm reply to an old message, but hopefully this will answer some questions, and maybe you can help me. I found out from Roche that they are no longer dispensing Valium as it's not on their list ... which is for very specific conditions. If Roche doesn't dispense, than Medicare takes it off their formularly list (or this is what I was told) and if Medicare takes it off their formulatory list, that many doctors stop prescribing as well. I spoke to the people from Roche and they are going to consider putting Sarcoidosis on their list for acceptable reasons to dispense, but I have to fill out a ton of paper work to do so. I have one letter from one Pulmonary Specialist, but I am collecting as many notes as I can get from people on this site and any other source I can find. If you could send me something expressing the benefits of valium for people with Sarcoidosis, (helping with calming down stomachs, shakes from prednisone, etc.) I will include it in my package. The more information and statements I have the better. If you know of anyone else I should contact, please let me know. Thank you in your help in my most recent fight....
Gloria
Hi Meg,
I hope you can help me...So far I have not gotten any of my physicians to go ahead with the Marshal Protocol...but I'm not giving up. I have been able to somewhat keep my condition under control...just don't know what surprise I will experience each day. My current situation is this. I have been on a dosage of 10 mg. of Valium as needed for the last 15 years (from when I was diagnosed with Sarcoidosis). I find it helps with the nausea, stops the vomiting before it starts and helps with the shakes and hyperactivity from all the prednisone and the steroid inhalers. Medicare took Valium off their formulatory list last year. I found that the generic does not work at all. In fact I was in the hospital a few weeks back where they were giving me breathing treatments every 4-6 hours. They gave me a generic valium to calm down the shakes and were shocked that it did nothing. I told them it wouldn't work...now they know. Anyway...to get to my point. After making numerous phone calls and writing letters to Medicare, our legislatures and Roche (who makes Valium) I finally got a response from Roche. They told me they have a list of conditions/diagnosis that will allow various Roche medications, including valium to be dispensed. At present their list includes HIV, transplants and some other conditions. They have nothing on Sarcoidosis. I am already getting a note from one of my pulmonary doctors expressing his feeling that valium should be a medication dispensed to people with Sarcoidosis, taking prednisone and other steroid inhalers. I was hoping I could get a note from you and anyone else you can think of to include in my response to Roche. Anything you can do would be greatly appreciated. If you can suggest any contacts for me to write to that would be great too. Thank you for anything you can do.
Hi Jeannine,
I hope you can help me...So far I have not gotten any of my physicians to go ahead with the Marshal Protocol...but I'm not giving up. I have been able to somewhat keep my condition under control...just don't know what surprise I will experience each day. My current situation is this. I have been on a dosage of 10 mg. of Valium as needed for the last 15 years (from when I was diagnosed with Sarcoidosis). I find it helps with the nausea, stops the vomiting before it starts and helps with the shakes and hyperactivity from all the prednisone and the steroid inhalers. Medicare took Valium off their formulatory list last year. I found that the generic does not work at all. In fact I was in the hospital a few weeks back where they were giving me breathing treatments every 4-6 hours. They gave me a generic valium to calm down the shakes and were shocked that it did nothing. I told them it wouldn't work...now they know. Anyway...to get to my point. After making numerous phone calls and writing letters to Medicare, our legislatures and Roche (who makes Valium) I finally got a response from Roche. They told me they have a list of conditions/diagnosis that will allow various Roche medications, including valium to be dispensed. At present their list includes HIV, transplants and some other conditions. They have nothing on Sarcoidosis. I am already getting a note from one of my pulmonary doctors expressing his feeling that valium should be a medication dispensed to people with Sarcoidosis, taking prednisone and other steroid inhalers. I was hoping I could get a note from you and anyone else you can think of to include in my response to Roche. Anything you can do would be greatly appreciated. If you can suggest any contacts for me to write to that would be great too. Thank you for anything you can do.
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Gloria: I was diagnosed with Sarcoid 14+ years ago. I am on prednisone, Speriva and Advair; have very strong reactions to prednisone. COPD, Emphysema (hereditary) Researching MP
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Meg Mangin R.N.
Research Team
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Posted: Wed May 14th, 2008 16:12 |
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Gloria, your experience mirrors ours.....generic Valium (diazepam) doesn't work for many folks with Th1 inflammation. See When and why should I use Valium?
If your doctor writes on the prescription.....Valium no substitutions.....your pharmacist will fill it.
It appears your insurer is using the manufacture's data (Roche) to refuse to pay for brand name Valium. A letter from us would not carry any weight with your insurer. If you have exhausted all appeals, there may be no recourse but to pay out of pocket.
Good luck.........
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Gloria
Member
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Posted: Wed May 14th, 2008 17:07 |
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Hi Meg,
Thanks for replying so quickly. In the past my doctor was able to put "brand name only" on my prescriptions, however, I am not under Medicare...and Medicare has taken Valium off their formulatory list. In working with Roche, if I can get Roche to put it on a formulatory list specific to Sarcoidosis, Medicare will do the same. I will go to the other section and copy and paste as much as I can, but if you can write something specific, with your name and credentials on the note, the more I send Roche, the better chance I will have of helping myself and others in my situation.
Thanks again!
Gloria
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Gloria: I was diagnosed with Sarcoid 14+ years ago. I am on prednisone, Speriva and Advair; have very strong reactions to prednisone. COPD, Emphysema (hereditary) Researching MP
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