Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Bruce... thanks for your reply. We sort of lost touch with the 'personal replies'...guess because we are usually in agreement, huh. I'm anxious to have a lab sleep study done. It can well solve my problems. There is simply no way I can even CONSIDER taking those costly drugs. Once in the donut hole is a tremendous teacher! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Bruce Sent: Saturday, January 30, 2010 3:59 PM To: Breathe-Support Subject: Re: (unknown) SherGlad about the sleep study order. While overnight oximeters at home arefine, I don't like the sleep studies being attempted at home. They areless complete and they miss technician notes and observations which canbe very important. There is no way to try different things at home. It'sjust not conducive in my opinion. It would be like doing your pulmonaryfunction tests at home with no technician. Sleep is such a foundationfor everything.Yes, the Revatio for PH is quite expensive. I don't know if Pfizer hasany programs you might be eligible for. But it will push you into andthrough the doughnut hole in a hurry. Would have been somewhat tolerablehad the portion of the health care proposals where the insurers hadagreed to half price during the doughnut hole passed. With myprescription plan it would run a little over $900 so would cost $300 fora month or two, then $900 for three or four months and then $40-50 orso. For those of us already going deep into or through the doughnut holethe Revatio doesn't add as much cost as it moves it forward.Good luck with the prednisone. It's generally effective for cellularNSIP. If you haven't been referred to a dietician I'd recommend it (aswell as a counselor actually). He'll give you meds for other sideeffects but as to the weight and risk of diabetes and mood swings, beready to address them upfront and maybe they won't materialize becauseof your proactive behavior.>>> Subject: Re: (unknown)> To: Breathe-Support > Date: Wednesday, January 27, 2010, 10:57 AM>>>>> BJ.... I'm letting my hair grow naturally too. White orwhatever color shows itself!> I'm tired of the constant coloring. I gave up perms years ago.My 'fried and dye' routine I called it. Actually, it doesn't look toobad. I'm not totally white but oh well if I turn a 'white-head' .> Your hair is lovely BJ and I know meds makes a huge differencein the quality of our hair.> It is what it is, huh friend!> MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> Don't fret about tomorrow, God is already there!>>>> From: Beverley Joy> Sent: Tuesday, January 26, 2010 9:37 PM> To: Breathe-Support@ yahoogroups. com> Subject: Re: (unknown)>>> I like my white hair. I earned everyone of them andcoloring is too much anymore.>> Beverley Joy,71,PF, Chronic HP, birds and mold1-09,Sjogren' s,Fibromyalgia Idaho>> ->>>>>>>>----------------------------------------------------------\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:01/30/10 11:35:00> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Sher you said "summer rate" maybe the rates will go back down in the fall if that is the case maybe overnight trips to Dr Raghu should be planned before and after the rates change just a thought, don't know if possible to schedule docs around summer rates lol Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: (unknown)To: Breathe-Support Date: Sunday, January 31, 2010, 3:16 PM BJ.... in my opinion, your pulmodude telling you he didn't think he "could get him" is so lame! Dr's have the inside track when they call. (usually). I am only being compliant with Dr. Raghu...he knows my feelings about it and we talked about it. So I'll give it 3 months. To do nothing can't be an option for me... even if I am dead set (whoops, wrong word!) against prednisone, I feel inclined to use it if Raghu Rxs when he knows I don't like taking it. BJ... here is the email for /Carolyn. Send to them both. (send to one, cc the other). cspada@... .edu or jmhayes@... n.edu they are both Dr. Raghu's assistant. They can take a msg to him and get back to you. He should know you are not taking the prednisone as Rx. I'm sure sorry your Diabetes flared up and then kidney trouble. Raghu can help you with the nasty side effects if he knows. I can't see Raghu UNHAPPY about a patient. He is apt to be surprised if you aren't on anything, though. It seems it's hell if we do and hell if we don't. (Like prednisone for me). I've been on cpap for a number of years and didn't suspect that could be the cause of the SOB that's been getting worse for quite a while. I naturally thought I am "being treated" for apnea.... I'm not sure but I think Rich was told the summer rate would be $92. But that would be before any discounts, senior or otherwise. I'm going to call tomorrow and find out for sure. We'll be going again in May. I'll let you know. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Saturday, January 30, 2010 3:36 PM To: Breathe-Support@ yahoogroups. com Subject: Re: (unknown) Sher, Aside from a second opinion I thought that my pulmo dude would work with Dr. Raghu. He said he would try but he didn't think he could get him so I should call. Dr. Raghu wanted me on Pred for 3 months too but it through me right back into Diabetes and that caused my kidneys to get worse. I thought that Dr. Raghu would take the news better from him. I can't even take the CellCept like he told me to. He may not be happy when I go back in April. I hope you can get the sleep apnea under control. That is what caused my husbands death. How much is the Inn going up? If I can get my appointments late enough I won't have to go there again. I can get up early enough to get there from my daughter's house. I'm glad that you are so happy with Dr. Raghu.Beverley Joy,71,PF 1-09, Chronic HP, birds and mold 12-09,Sjogren' s,Fibromyalgia Idaho From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Wednesday, January 27, 2010, 10:57 AM BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself! I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' . Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair. It is what it is, huh friend! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Tuesday, January 26, 2010 9:37 PM To: Breathe-Support@ yahoogroups. com Subject: Re: (unknown) I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho- No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Pink.... yes, the rates do fall and rise again depending on the season. I don't want to wait until fall rates come around again (usually in Oct) to see Dr. Raghu again. That's to long between visits. I plan to gradually extend visits with him. The high rates are only about 6 months long so I should be able to fit visits with him in between. Thanks. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Joyce T Rosenberg Sent: Sunday, January 31, 2010 2:04 PM To: Breathe-Support Subject: Re: (unknown) Sher you said "summer rate" maybe the rates will go back down in the fall if that is the case maybe overnight trips to Dr Raghu should be planned before and after the rates change just a thought, don't know if possible to schedule docs around summer rates lol Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support Date: Sunday, January 31, 2010, 3:16 PM BJ.... in my opinion, your pulmodude telling you he didn't think he "could get him" is so lame! Dr's have the inside track when they call. (usually). I am only being compliant with Dr. Raghu...he knows my feelings about it and we talked about it. So I'll give it 3 months. To do nothing can't be an option for me... even if I am dead set (whoops, wrong word!) against prednisone, I feel inclined to use it if Raghu Rxs when he knows I don't like taking it. BJ... here is the email for /Carolyn. Send to them both. (send to one, cc the other). cspada@... .edu or jmhayes@... n.edu they are both Dr. Raghu's assistant. They can take a msg to him and get back to you. He should know you are not taking the prednisone as Rx. I'm sure sorry your Diabetes flared up and then kidney trouble. Raghu can help you with the nasty side effects if he knows. I can't see Raghu UNHAPPY about a patient. He is apt to be surprised if you aren't on anything, though. It seems it's hell if we do and hell if we don't. (Like prednisone for me). I've been on cpap for a number of years and didn't suspect that could be the cause of the SOB that's been getting worse for quite a while. I naturally thought I am "being treated" for apnea.... I'm not sure but I think Rich was told the summer rate would be $92. But that would be before any discounts, senior or otherwise. I'm going to call tomorrow and find out for sure. We'll be going again in May. I'll let you know. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Saturday, January 30, 2010 3:36 PM To: Breathe-Support@ yahoogroups. com Subject: Re: (unknown) Sher, Aside from a second opinion I thought that my pulmo dude would work with Dr. Raghu. He said he would try but he didn't think he could get him so I should call. Dr. Raghu wanted me on Pred for 3 months too but it through me right back into Diabetes and that caused my kidneys to get worse. I thought that Dr. Raghu would take the news better from him. I can't even take the CellCept like he told me to. He may not be happy when I go back in April. I hope you can get the sleep apnea under control. That is what caused my husbands death. How much is the Inn going up? If I can get my appointments late enough I won't have to go there again. I can get up early enough to get there from my daughter's house. I'm glad that you are so happy with Dr. Raghu.Beverley Joy,71,PF 1-09, Chronic HP, birds and mold 12-09,Sjogren' s,Fibromyalgia Idaho From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support@ yahoogroups. comDate: Wednesday, January 27, 2010, 10:57 AM BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself! I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' . Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair. It is what it is, huh friend! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Tuesday, January 26, 2010 9:37 PM To: Breathe-Support@ yahoogroups. com Subject: Re: (unknown) I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho- No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2659 - Release Date: 01/30/10 22:39:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Sher I don't know the degree of your PH to know the specifics but if you do really need the Revatio I'd strongly urge you to contact Pfizer. While I know there are many programs you don't qualify for, Pfizer is often one of the more helpful pharmaceuticals and may well have some way to assist. > > > > > > From: Sher bofus6@ > > Subject: Re: (unknown) > > To: Breathe-Support > > Date: Wednesday, January 27, 2010, 10:57 AM > > > > > > > > > > BJ.... I'm letting my hair grow naturally too. White or > whatever color shows itself! > > I'm tired of the constant coloring. I gave up perms years ago. > My 'fried and dye' routine I called it. Actually, it doesn't look too > bad. I'm not totally white but oh well if I turn a 'white-head' . > > Your hair is lovely BJ and I know meds makes a huge difference > in the quality of our hair. > > It is what it is, huh friend! > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > > Don't fret about tomorrow, God is already there! > > > > > > > > From: Beverley Joy > > Sent: Tuesday, January 26, 2010 9:37 PM > > To: Breathe-Support@ yahoogroups. com > > Subject: Re: (unknown) > > > > > > I like my white hair. I earned everyone of them and > coloring is too much anymore. > > > > Beverley Joy,71,PF, Chronic HP, birds and mold > 1-09,Sjogren' s,Fibromyalgia Idaho > > > > - > > > > > > > > > > > > > > > > > ----------------------------------------------------------\ > -------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: > 01/30/10 11:35:00 > > > > > > > > > ------------------------------------------------------------------------\ -------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Sher - have you considered Canadian pharmacies? It is not illegal, and it can be done by mail or fax (or internet for refills). B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #35 - Dogs playing in the snow. Consider what a great forest is set ablaze by a small spark. ( 3:5) To: Breathe-Support Sent: Sun, January 31, 2010 8:54:49 PMSubject: Re: (unknown) SherI don't know the degree of your PH to know the specifics but if you doreally need the Revatio I'd strongly urge you to contact Pfizer. While Iknow there are many programs you don't qualify for, Pfizer is often oneof the more helpful pharmaceuticals and may well have some way toassist.> >> >> > From: Sher bofus6@> > Subject: Re: (unknown)> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, January 27, 2010, 10:57 AM> >> >> >> >> > BJ.... I'm letting my hair grow naturally too. White or> whatever color shows itself!> > I'm tired of the constant coloring. I gave up perms years ago.> My 'fried and dye' routine I called it. Actually, it doesn't look too> bad. I'm not totally white but oh well if I turn a 'white-head' .> > Your hair is lovely BJ and I know meds makes a huge difference> in the quality of our hair.> > It is what it is, huh friend!> > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> > Don't fret about tomorrow, God is already there!> >> >> >> > From: Beverley Joy> > Sent: Tuesday, January 26, 2010 9:37 PM> > To: Breathe-Support@ yahoogroups. com> > Subject: Re: (unknown)> >> >> > I like my white hair. I earned everyone of them and> coloring is too much anymore.> >> > Beverley Joy,71,PF, Chronic HP, birds and mold> 1-09,Sjogren' s,Fibromyalgia Idaho> >> > -> >> >> >> >> >> >> >> >> ------------ --------- --------- --------- --------- --------- -\> --------> >> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:> 01/30/10 11:35:00> >>>>>>>>------------ --------- --------- --------- --------- --------- -\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:01/30/10 11:35:00> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2010 Report Share Posted January 31, 2010 Barbara Legality in question but I do get Nexium that way from India. (Postal service does occasionally stop some still but most suppliers just replace if that happens). However, I checked and Sildenafil by brand is no cheaper from Canada than the US. Now, there is a generic Sildenafil from India but I personally would be quite a bit scared of a generic of something like that. Hopefully she can find assistance here or that at least we'll ultimately have a better solution on the doughnut hole. I find my medicare and supplement to be as good as any insurance I've ever had and better than most but the doughnut hole is such a bad situation. We have members who hit it in February. > > > > > > > > > From: Sher bofus6@ > > > Subject: Re: (unknown) > > > To: Breathe-Support@ yahoogroups. com > > > Date: Wednesday, January 27, 2010, 10:57 AM > > > > > > > > > > > > > > > BJ.... I'm letting my hair grow naturally too. White or > > whatever color shows itself! > > > I'm tired of the constant coloring. I gave up perms years ago. > > My 'fried and dye' routine I called it. Actually, it doesn't look too > > bad. I'm not totally white but oh well if I turn a 'white-head' . > > > Your hair is lovely BJ and I know meds makes a huge difference > > in the quality of our hair. > > > It is what it is, huh friend! > > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > > > Don't fret about tomorrow, God is already there! > > > > > > > > > > > > From: Beverley Joy > > > Sent: Tuesday, January 26, 2010 9:37 PM > > > To: Breathe-Support@ yahoogroups. com > > > Subject: Re: (unknown) > > > > > > > > > I like my white hair. I earned everyone of them and > > coloring is too much anymore. > > > > > > Beverley Joy,71,PF, Chronic HP, birds and mold > > 1-09,Sjogren' s,Fibromyalgia Idaho > > > > > > - > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ > > -------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: > > 01/30/10 11:35:00 > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ > -------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: > 01/30/10 11:35:00 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Bruce... thanks for the info. I will be using prednisone for 3 months....seeing Dr. Raghu again in 4 months. If the prednisone works then of course I won't have to be concerned about the Ravatio. I will remember what you post here. A hug to you... MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Bruce Sent: Sunday, January 31, 2010 5:54 PM To: Breathe-Support Subject: Re: (unknown) SherI don't know the degree of your PH to know the specifics but if you doreally need the Revatio I'd strongly urge you to contact Pfizer. While Iknow there are many programs you don't qualify for, Pfizer is often oneof the more helpful pharmaceuticals and may well have some way toassist.> >> >> > From: Sher bofus6@> > Subject: Re: (unknown)> > To: Breathe-Support > > Date: Wednesday, January 27, 2010, 10:57 AM> >> >> >> >> > BJ.... I'm letting my hair grow naturally too. White or> whatever color shows itself!> > I'm tired of the constant coloring. I gave up perms years ago.> My 'fried and dye' routine I called it. Actually, it doesn't look too> bad. I'm not totally white but oh well if I turn a 'white-head' .> > Your hair is lovely BJ and I know meds makes a huge difference> in the quality of our hair.> > It is what it is, huh friend!> > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> > Don't fret about tomorrow, God is already there!> >> >> >> > From: Beverley Joy> > Sent: Tuesday, January 26, 2010 9:37 PM> > To: Breathe-Support@ yahoogroups. com> > Subject: Re: (unknown)> >> >> > I like my white hair. I earned everyone of them and> coloring is too much anymore.> >> > Beverley Joy,71,PF, Chronic HP, birds and mold> 1-09,Sjogren' s,Fibromyalgia Idaho> >> > -> >> >> >> >> >> >> >> >> ----------------------------------------------------------\> --------> >> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:> 01/30/10 11:35:00> >>>>>>>>----------------------------------------------------------\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:01/30/10 11:35:00> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2659 - Release Date: 01/30/10 22:39:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Hi Barbara.... yes, I've considered Canadian Rx but I'm one of those a little leery of them. So have not used one this far.... Thanks. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Barbara McD Sent: Sunday, January 31, 2010 7:27 PM To: Breathe-Support Subject: Re: Re: (unknown) Sher - have you considered Canadian pharmacies? It is not illegal, and it can be done by mail or fax (or internet for refills). B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #35 - Dogs playing in the snow. Consider what a great forest is set ablaze by a small spark. ( 3:5) From: Bruce <brucemoreland (AT) gmail (DOT) com>To: Breathe-Support Sent: Sun, January 31, 2010 8:54:49 PMSubject: Re: (unknown) SherI don't know the degree of your PH to know the specifics but if you doreally need the Revatio I'd strongly urge you to contact Pfizer. While Iknow there are many programs you don't qualify for, Pfizer is often oneof the more helpful pharmaceuticals and may well have some way toassist.> >> >> > From: Sher bofus6@> > Subject: Re: (unknown)> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, January 27, 2010, 10:57 AM> >> >> >> >> > BJ.... I'm letting my hair grow naturally too. White or> whatever color shows itself!> > I'm tired of the constant coloring. I gave up perms years ago.> My 'fried and dye' routine I called it. Actually, it doesn't look too> bad. I'm not totally white but oh well if I turn a 'white-head' .> > Your hair is lovely BJ and I know meds makes a huge difference> in the quality of our hair.> > It is what it is, huh friend!> > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> > Don't fret about tomorrow, God is already there!> >> >> >> > From: Beverley Joy> > Sent: Tuesday, January 26, 2010 9:37 PM> > To: Breathe-Support@ yahoogroups. com> > Subject: Re: (unknown)> >> >> > I like my white hair. I earned everyone of them and> coloring is too much anymore.> >> > Beverley Joy,71,PF, Chronic HP, birds and mold> 1-09,Sjogren' s,Fibromyalgia Idaho> >> > -> >> >> >> >> >> >> >> >> ------------ --------- --------- --------- --------- --------- -\> --------> >> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:> 01/30/10 11:35:00> >>>>>>>>------------ --------- --------- --------- --------- --------- -\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:01/30/10 11:35:00> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2659 - Release Date: 01/30/10 22:39:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 I hear ya, Sher. I'm cautious too. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #36 - Sleep. Beautiful sleep!. Consider what a great forest is set ablaze by a small spark. ( 3:5) To: Breathe-Support Sent: Mon, February 1, 2010 4:23:12 PMSubject: Re: Re: (unknown) Hi Barbara.... yes, I've considered Canadian Rx but I'm one of those a little leery of them. So have not used one this far.... Thanks. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Barbara McD Sent: Sunday, January 31, 2010 7:27 PM To: Breathe-Support@ yahoogroups. com Subject: Re: Re: (unknown) Sher - have you considered Canadian pharmacies? It is not illegal, and it can be done by mail or fax (or internet for refills). B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Counting my blessings: #35 - Dogs playing in the snow. Consider what a great forest is set ablaze by a small spark. ( 3:5) From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sun, January 31, 2010 8:54:49 PMSubject: Re: (unknown) SherI don't know the degree of your PH to know the specifics but if you doreally need the Revatio I'd strongly urge you to contact Pfizer. While Iknow there are many programs you don't qualify for, Pfizer is often oneof the more helpful pharmaceuticals and may well have some way toassist.> >> >> > From: Sher bofus6@> > Subject: Re: (unknown)> > To: Breathe-Support@ yahoogroups. com> > Date: Wednesday, January 27, 2010, 10:57 AM> >> >> >> >> > BJ.... I'm letting my hair grow naturally too. White or> whatever color shows itself!> > I'm tired of the constant coloring. I gave up perms years ago.> My 'fried and dye' routine I called it. Actually, it doesn't look too> bad. I'm not totally white but oh well if I turn a 'white-head' .> > Your hair is lovely BJ and I know meds makes a huge difference> in the quality of our hair.> > It is what it is, huh friend!> > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.> > Don't fret about tomorrow, God is already there!> >> >> >> > From: Beverley Joy> > Sent: Tuesday, January 26, 2010 9:37 PM> > To: Breathe-Support@ yahoogroups. com> > Subject: Re: (unknown)> >> >> > I like my white hair. I earned everyone of them and> coloring is too much anymore.> >> > Beverley Joy,71,PF, Chronic HP, birds and mold> 1-09,Sjogren' s,Fibromyalgia Idaho> >> > -> >> >> >> >> >> >> >> >> ------------ --------- --------- --------- --------- --------- -\> --------> >> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:> 01/30/10 11:35:00> >>>>>>>>------------ --------- --------- --------- --------- --------- -\-------->>>> No virus found in this incoming message.> Checked by AVG - www.avg.com> Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date:01/30/10 11:35:00> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2659 - Release Date: 01/30/10 22:39:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Sher There are some on the state of Minnesota's site they actually have approved. I developed adequate comfort of a branded product coming in the manufacturer's packaging and being sold by a pharmacy licensed in Canada. Those just selling online and with no bricks and mortar licensed address I'd trust less and I'd trust generics coming from countries other than Canada less. It simply came down for me to a $3000 per year price different on Nexium and what I get is Neksium from India, sold by Astra Zenica and maufactured by one of the same pharmaceuticals that manufacturers for the US, although much of the US product comes from Turkey, among other places. > > > > > > > > > From: Sher bofus6@ > > > Subject: Re: (unknown) > > > To: Breathe-Support@ yahoogroups. com > > > Date: Wednesday, January 27, 2010, 10:57 AM > > > > > > > > > > > > > > > BJ.... I'm letting my hair grow naturally too. White or > > whatever color shows itself! > > > I'm tired of the constant coloring. I gave up perms years ago. > > My 'fried and dye' routine I called it. Actually, it doesn't look too > > bad. I'm not totally white but oh well if I turn a 'white-head' . > > > Your hair is lovely BJ and I know meds makes a huge difference > > in the quality of our hair. > > > It is what it is, huh friend! > > > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > > > Don't fret about tomorrow, God is already there! > > > > > > > > > > > > From: Beverley Joy > > > Sent: Tuesday, January 26, 2010 9:37 PM > > > To: Breathe-Support@ yahoogroups. com > > > Subject: Re: (unknown) > > > > > > > > > I like my white hair. I earned everyone of them and > > coloring is too much anymore. > > > > > > Beverley Joy,71,PF, Chronic HP, birds and mold > > 1-09,Sjogren' s,Fibromyalgia Idaho > > > > > > - > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ > > -------- > > > > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: > > 01/30/10 11:35:00 > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- -\ > -------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: > 01/30/10 11:35:00 > > > > > > > > > > > > ------------------------------------------------------------------------\ -------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2659 - Release Date: 01/30/10 22:39:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 Beets (if that's the same as beetroot), cod liver oil and pistachios are legal but advanced. Â I'm not sure about what to do about arthritis pain. Â Debbie 40 cd dx'd 3.02 scd 12.05 Â hii would like to know if beetroot, cod liver oil and Pistachios are legal. Also my mum got crohns shes doing fine on scd but having arthritis pain and swelling of joints because of crohns but can be do about it thank youKuljit mann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2010 Report Share Posted October 6, 2010 Hi Jackie, Yes, your message came through......hope everything is ok now with your new carrier........:-) Hugs,DarleneNS Co-Owner/Moderator (unknown) I am hoping my email address comes through this time. My internet carreir, verizon, sold out to frontier.com I haven't been able to send back any responses. Let me know if it comes through.and I live just north of the Dells to the person in Greenvield by Mil.Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 , What is the weather like there. I know I have increased problems with change of seasons. I've had pneumonia twice in the past month and a half and so much pain with th e rain and warm to cold I was almost in a walker on Monday. I'm on Plaqunil, methotrexate and I still can't go under 10 of Pred without getting worse, I hope you feel better and have a great weekend Mitch (unknown) hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2010 Report Share Posted October 8, 2010 HI , I'm sorry you have to deal with this cray Disease, and welcome. Yes on both questions, each time it came back it comes back worse. And this time of the year is definitely harder for me, and I think many of us. I've had NS for 7 years too, good days, and bad days. There are other treatment options, I've been on Prednisone for years, and it just wasn't working, now I'm on Remicade and IV, I get it every 5 weeks, along with Methotrexate, and Plaquanil, no pred. If you stroll to the bottom of the page you will find some links that will lead you to other treatment options, print them off and take them into your doctor, talk to him/her about alternate treatments. Prednisone is really only a temporary fix, that's the problem, you will go up and down on the dose, you will get better at higher dosages, and get worse as the Pred dose goes down. Please feel free to ask any questions, we are here to help you, however we are all sick as well, so sometimes it might take a little longer to get back to you.  MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)   hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Thank you so much for your reply it means a lot, in 7 years your the first person ive spoke to that understands. I will look into the treatments you refered to. Thanks again To: Neurosarcoidosis Sent: Sat, October 9, 2010 4:40:07 AMSubject: Re: (unknown) HI , I'm sorry you have to deal with this cray Disease, and welcome. Yes on both questions, each time it came back it comes back worse. And this time of the year is definitely harder for me, and I think many of us. I've had NS for 7 years too, good days, and bad days. There are other treatment options, I've been on Prednisone for years, and it just wasn't working, now I'm on Remicade and IV, I get it every 5 weeks, along with Methotrexate, and Plaquanil, no pred. If you stroll to the bottom of the page you will find some links that will lead you to other treatment options, print them off and take them into your doctor, talk to him/her about alternate treatments. Prednisone is really only a temporary fix, that's the problem, you will go up and down on the dose, you will get better at higher dosages, and get worse as the Pred dose goes down. Please feel free to ask any questions, we are here to help you, however we are all sick as well, so sometimes it might take a little longer to get back to you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 hi mitch The weather here is very breezy with a little nip in the air and the dark nights drawing in. I sorry to here you not doing well at the moment and hope you improve soon. Thats the heart breaking thing about this disease, you think you might be winning and it comes back with a vengance.Ive lost count how many times. Thank you for your list of medication i have never heard of most of it but i will look into it. christine To: Neurosarcoidosis Sent: Sat, October 9, 2010 2:45:36 AMSubject: Re: (unknown) , What is the weather like there. I know I have increased problems with change of seasons. I've had pneumonia twice in the past month and a half and so much pain with th e rain and warm to cold I was almost in a walker on Monday. I'm on Plaqunil, methotrexate and I still can't go under 10 of Pred without getting worse, I hope you feel better and have a great weekend Mitch (unknown) hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2010 Report Share Posted October 9, 2010 Hello , Glad to meet you, just wish it was under other circumstances. You have found a great group of people. As to your question, mine doesn't seem to have a particular season it likes. It just does the agressive and super agressive. There is lots of good informaton, and the ammunition you need to fight for yourself. Like we tell each other, if you don't fight for good care for yourself who will, we are the ones that live in these bodies 24/7. Oh by the way, my grandmother's name was Augusta McLean To: Neurosarcoidosis Sent: Fri, October 8, 2010 1:06:46 PMSubject: (unknown) hi. My names christine and I have suffered with neurosarcoidosis for 7 years now. every time i think ive beaten it ,it comes back with a vengance.I live in ireland and this is very rare only 3 or 4 people have it. The only treatment ive every had is steriods the dose going up and down from 60mg till 7mg daily. Was wondering does anyone else find it always gets worse this time of year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 Thank you for that answer. Another ignorant question. What are Weston Price type foods? www.westonaprice.org he was a researcher that studies lots of people and tribes and cultures to see what they ate for healthy bodies. Katy ____________________________________________________________ Refinance Now 3.7% FIXED $160,000 Mortgage for $547/mo. FREE. No Obligation. Get 4 Quotes! http://thirdpartyoffers.juno.com/TGL3141/4cbd8bd48f65e39acd9st01vuc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2010 Report Share Posted October 19, 2010 At 05:30 AM 10/19/2010, you wrote: Thank you for that answer. Another ignorant question. What are Weston Price type foods? Weston-Price Foundation favors going back to naturally and traditionally prepared foods, and getting rid of processed junk. They are not SCD because they allow grains and potatoes and some other non-SCD foods, but I would consider them an excellent point to head for if one chooses to add non-SCD foods once significant healing has taken place. — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 HAPPY NEW YEAR TO EVERYONE!!!! May we all have a better year than the last. To: Neuro Sarc <Neurosarcoidosis >Sent: Fri, December 24, 2010 2:09:25 PMSubject: (unknown) Greetings of the season to all. Wishing you all a wonderful Christmas spent with family, friends and loved ones. May everyone be as healthy as they can be and may all have a Happy Healthier New Year. Matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Hi, Jackie. I only got part of your message (I'm using my phone) but I'll look for the rest of it when I can get to my computer. I didn't want you to think no one responded. I am wiped out & hurting. I had an appt at the sarc clinic in Indy today. My leg was feeling a bit better, so I went. With the 2 hr round trip, chest ct, lung function test & doctor appt, I was gone over 6 hrs. So I took a pain pill when I got home & got my leg all bundled up in warm rice sox. That should help the pain. So I'll look for the rest of your message later tonight or tomorrow. Okay? (unknown) hi I hope someone can help me I have had neuroscoidosis for over 7 years I have just seen a Endocrinologist who has written to me to inform me I have adrenal insufficiency and need to increase my prednisolone or to use hydrocortisone this will need to be increased if Quote Link to comment Share on other sites More sharing options...
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