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Has anyone taken Ventavis (Iloprost) for PH? I have taken Tracleer since 12-06 and Revatio since 2/08. I hope to have a echo-heart test in Jan. to see that my pressure is. I am having a PFT on Jan 15th. My SOB is really getting me down, I can hardly get around the house without flopping down on one of my many stools.http://www.phcentral.org/medical/treatments/ventavis.shtmlhttp://www.4ventavis.com/default.asp?page=patient_home P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60

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Can't help you as I haven't taken it but just because the question has

come up on PH meds, wanted to add a little information for others,

knowing you've more than researched it already.

Six medications are approved in the US: Flolan, Letairis, Remodulin,

Revatio, Tracleer and Ventavis.

Typically as has experienced Tracleer or Revatio will be tried

first. Tracleer has been approved longest. These are both oral

medications.

Flolan, Remodulin, and Ventavis are similar and are prostanoid

medications. Ventavis is inhaled six to nine times per day. Remodulin

and Flolan are both delivered through continuous infusions. Flolan is

considered the most effective although some are helped by the others

when Flolan doesn't work. However, Flolan is also the most complicated

to take as it has to be mixed and refrigerated. Remodulin does not have

to be.

Letairis was only approved in 2007 and is administered orally.

Generally depending on the degree of your PH when discovered and more

specifics as to its cause and nature, you would start on Tracleer or

Revatio, perhaps trying Letairis if they didn't work. Then if your PH

was worsening or not responding you'd move up to the others. Ventavis

would be the first choice because of ease of administraion, especially

if you were still otherwise at least partially mobile. Remodulin is less

difficult to administer than Flolan and many doctors would choose it

first while others appear to always choose Flolan over it, assuming that

at that point they want to give you the strongest medication they have.

Many clinical trials are continuing for all these medications in various

forms of PH and various combinations with other diseases as well as in

combination of other meds or each other.

>

> Has anyone taken Ventavis (Iloprost) for PH?

>

> I have taken Tracleer since 12-06 and Revatio since 2/08. I hope to

have a echo-heart test in Jan. to see that my pressure is. I am having

a PFT on Jan 15th. My SOB is really getting me down, I can hardly get

around the house without flopping down on one of my many stools.

>

>

> http://www.phcentral.org/medical/treatments/ventavis.shtml

>

> http://www.4ventavis.com/default.asp?page=patient_home

>

>

>

> P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04,

PH 3/06, ILL yo 60

>

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Hey Brother Bruce...I hope you posted this info. someplace for later reference...

You are amazing what you research and share!

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: PH Question

Can't help you as I haven't taken it but just because the question hascome up on PH meds, wanted to add a little information for others,knowing you've more than researched it already.Six medications are approved in the US: Flolan, Letairis, Remodulin,Revatio, Tracleer and Ventavis.Typically as has experienced Tracleer or Revatio will be triedfirst. Tracleer has been approved longest. These are both oralmedications.Flolan, Remodulin, and Ventavis are similar and are prostanoidmedications. Ventavis is inhaled six to nine times per day. Remodulinand Flolan are both delivered through continuous infusions. Flolan isconsidered the most effective although some are helped by the otherswhen Flolan doesn't work. However, Flolan is also the most complicatedto take as it has to be mixed and refrigerated. Remodulin does not haveto be.Letairis was only approved in 2007 and is administered orally.Generally depending on the degree of your PH when discovered and morespecifics as to its cause and nature, you would start on Tracleer orRevatio, perhaps trying Letairis if they didn't work. Then if your PHwas worsening or not responding you'd move up to the others. Ventaviswould be the first choice because of ease of administraion, especiallyif you were still otherwise at least partially mobile. Remodulin is lessdifficult to administer than Flolan and many doctors would choose itfirst while others appear to always choose Flolan over it, assuming thatat that point they want to give you the strongest medication they have.Many clinical trials are continuing for all these medications in variousforms of PH and various combinations with other diseases as well as incombination of other meds or each other.>> Has anyone taken Ventavis (Iloprost) for PH?>> I have taken Tracleer since 12-06 and Revatio since 2/08. I hope tohave a echo-heart test in Jan. to see that my pressure is. I am havinga PFT on Jan 15th. My SOB is really getting me down, I can hardly getaround the house without flopping down on one of my many stools.>>> http://www.phcentral.org/medical/treatments/ventavis.shtml>> http://www.4ventavis.com/default.asp?page=patient_home>>>> P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04,PH 3/06, ILL yo 60>

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MB and Bruce-you are very right NEW DOCTORS for sure. This is getting

ridiculous.

My PH is moderate now-would've been mild back in June probably. When I am

sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my

sats drop to the low 80's most of the time. If I try to vacuum or clean the

toilet ect they go to about 76%. It usually takes me about 10-15 minutes to

recover and sometimes I end up coughing like crazy because I am so SOB. Looks

like maybe Albany Med CenterThe doctor does not even seemed concerned and told

me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just

don't act sick enough around them-what the heck do I have to do??? I wish I did

live closer and could travel to a major university for help. Looks like ALbany

Med Center for the next appt-then go from there. Still working on appt " s. Thanks

for your help-

Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH 2008

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Hi Diane,

Just to throw some names out there, if there is any way for you to make the trip it would be worthwhile to try to get in to see either Dr. Padilla at Mt Sinai Medical Center in NY or Dr. Simonelli at Columbia Presbyterian. There are others in NY obviously but those are two that I know personally.

You know by going to see them for an evaluation you are not comitting yourself to making that trip back and forth every month. You could go down there two or three times a year and have your local doctor carry out whatever treatment plan was agreed upon.

When I lived in NY I saw Dr Simonelli every three months and in between I had a pulmo locally who saw me whenever I needed to be seen for the little things that come up.

I'm not trying to be pushy but untreated pulmonary hypertension is going to shorten your life. What you describe is very hard for me to understand. To send a patient home and say, 'oh well just do your best' is absurd.

You are in my thoughts and prayers.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

To: Breathe-Support Sent: Thursday, January 1, 2009 7:35:21 PMSubject: re:PH question

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Hi Diane,

Just to throw some names out there, if there is any way for you to make the trip it would be worthwhile to try to get in to see either Dr. Padilla at Mt Sinai Medical Center in NY or Dr. Simonelli at Columbia Presbyterian. There are others in NY obviously but those are two that I know personally.

You know by going to see them for an evaluation you are not comitting yourself to making that trip back and forth every month. You could go down there two or three times a year and have your local doctor carry out whatever treatment plan was agreed upon.

When I lived in NY I saw Dr Simonelli every three months and in between I had a pulmo locally who saw me whenever I needed to be seen for the little things that come up.

I'm not trying to be pushy but untreated pulmonary hypertension is going to shorten your life. What you describe is very hard for me to understand. To send a patient home and say, 'oh well just do your best' is absurd.

You are in my thoughts and prayers.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

To: Breathe-Support Sent: Thursday, January 1, 2009 7:35:21 PMSubject: re:PH question

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Hi Diane,

Just to throw some names out there, if there is any way for you to make the trip it would be worthwhile to try to get in to see either Dr. Padilla at Mt Sinai Medical Center in NY or Dr. Simonelli at Columbia Presbyterian. There are others in NY obviously but those are two that I know personally.

You know by going to see them for an evaluation you are not comitting yourself to making that trip back and forth every month. You could go down there two or three times a year and have your local doctor carry out whatever treatment plan was agreed upon.

When I lived in NY I saw Dr Simonelli every three months and in between I had a pulmo locally who saw me whenever I needed to be seen for the little things that come up.

I'm not trying to be pushy but untreated pulmonary hypertension is going to shorten your life. What you describe is very hard for me to understand. To send a patient home and say, 'oh well just do your best' is absurd.

You are in my thoughts and prayers.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

To: Breathe-Support Sent: Thursday, January 1, 2009 7:35:21 PMSubject: re:PH question

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Dr Padilla was at the conference that I went to that was sponsored by the Coalition for Pulmonary Fibrosis

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: re:PH questionTo: Breathe-Support Date: Thursday, January 1, 2009, 8:12 PM

Hi Diane,

Just to throw some names out there, if there is any way for you to make the trip it would be worthwhile to try to get in to see either Dr. Padilla at Mt Sinai Medical Center in NY or Dr. Simonelli at Columbia Presbyterian. There are others in NY obviously but those are two that I know personally.

You know by going to see them for an evaluation you are not comitting yourself to making that trip back and forth every month. You could go down there two or three times a year and have your local doctor carry out whatever treatment plan was agreed upon.

When I lived in NY I saw Dr Simonelli every three months and in between I had a pulmo locally who saw me whenever I needed to be seen for the little things that come up.

I'm not trying to be pushy but untreated pulmonary hypertension is going to shorten your life. What you describe is very hard for me to understand. To send a patient home and say, 'oh well just do your best' is absurd.

You are in my thoughts and prayers.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

From: "DRice2 (AT) nycap (DOT) rr.com" <DRice2 (AT) nycap (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, January 1, 2009 7:35:21 PMSubject: re:PH question

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Dr Padilla was at the conference that I went to that was sponsored by the Coalition for Pulmonary Fibrosis

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: re:PH questionTo: Breathe-Support Date: Thursday, January 1, 2009, 8:12 PM

Hi Diane,

Just to throw some names out there, if there is any way for you to make the trip it would be worthwhile to try to get in to see either Dr. Padilla at Mt Sinai Medical Center in NY or Dr. Simonelli at Columbia Presbyterian. There are others in NY obviously but those are two that I know personally.

You know by going to see them for an evaluation you are not comitting yourself to making that trip back and forth every month. You could go down there two or three times a year and have your local doctor carry out whatever treatment plan was agreed upon.

When I lived in NY I saw Dr Simonelli every three months and in between I had a pulmo locally who saw me whenever I needed to be seen for the little things that come up.

I'm not trying to be pushy but untreated pulmonary hypertension is going to shorten your life. What you describe is very hard for me to understand. To send a patient home and say, 'oh well just do your best' is absurd.

You are in my thoughts and prayers.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

HAPPY NEW YEAR!!

From: "DRice2 (AT) nycap (DOT) rr.com" <DRice2 (AT) nycap (DOT) rr.com>To: Breathe-Support@ yahoogroups. comSent: Thursday, January 1, 2009 7:35:21 PMSubject: re:PH question

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Diane

i hope your docs do PFT's and 6 minute walks when they see you

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: re:PH questionTo: Breathe-Support Date: Thursday, January 1, 2009, 7:35 PM

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Diane

i hope your docs do PFT's and 6 minute walks when they see you

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: re:PH questionTo: Breathe-Support Date: Thursday, January 1, 2009, 7:35 PM

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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Diane

i hope your docs do PFT's and 6 minute walks when they see you

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: re:PH questionTo: Breathe-Support Date: Thursday, January 1, 2009, 7:35 PM

MB and Bruce-you are very right NEW DOCTORS for sure. This is getting ridiculous.My PH is moderate now-would've been mild back in June probably. When I am sitting I can use 2LPM if not moving at all. The minute I walk around-on 4LPM my sats drop to the low 80's most of the time. If I try to vacuum or clean the toilet ect they go to about 76%. It usually takes me about 10-15 minutes to recover and sometimes I end up coughing like crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor does not even seemed concerned and told me just do the best I can on 2 when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough around them-what the heck do I have to do??? I wish I did live closer and could travel to a major university for help. Looks like ALbany Med Center for the next appt-then go from there. Still working on appt"s. Thanks for your help-Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH

2008

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HI Diane!

I have changed doctors many times. I do go to a university medical

center (Emory in Atlanta) where there is an ILD Clinic. If you feel the

need to change, then change. Many regular pulmos know nothing about our

disease.

Good Luck & Toodles

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> MB and Bruce-you are very right NEW DOCTORS for sure. This is getting

ridiculous.

> My PH is moderate now-would've been mild back in June probably. When I

am sitting I can use 2LPM if not moving at all. The minute I walk

around-on 4LPM my sats drop to the low 80's most of the time. If I try

to vacuum or clean the toilet ect they go to about 76%. It usually takes

me about 10-15 minutes to recover and sometimes I end up coughing like

crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor

does not even seemed concerned and told me just do the best I can on 2

when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough

around them-what the heck do I have to do??? I wish I did live closer

and could travel to a major university for help. Looks like ALbany Med

Center for the next appt-then go from there. Still working on appt " s.

Thanks for your help-

>

> Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH 2008

>

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HI Diane!

I have changed doctors many times. I do go to a university medical

center (Emory in Atlanta) where there is an ILD Clinic. If you feel the

need to change, then change. Many regular pulmos know nothing about our

disease.

Good Luck & Toodles

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> MB and Bruce-you are very right NEW DOCTORS for sure. This is getting

ridiculous.

> My PH is moderate now-would've been mild back in June probably. When I

am sitting I can use 2LPM if not moving at all. The minute I walk

around-on 4LPM my sats drop to the low 80's most of the time. If I try

to vacuum or clean the toilet ect they go to about 76%. It usually takes

me about 10-15 minutes to recover and sometimes I end up coughing like

crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor

does not even seemed concerned and told me just do the best I can on 2

when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough

around them-what the heck do I have to do??? I wish I did live closer

and could travel to a major university for help. Looks like ALbany Med

Center for the next appt-then go from there. Still working on appt " s.

Thanks for your help-

>

> Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH 2008

>

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HI Diane!

I have changed doctors many times. I do go to a university medical

center (Emory in Atlanta) where there is an ILD Clinic. If you feel the

need to change, then change. Many regular pulmos know nothing about our

disease.

Good Luck & Toodles

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

>

> MB and Bruce-you are very right NEW DOCTORS for sure. This is getting

ridiculous.

> My PH is moderate now-would've been mild back in June probably. When I

am sitting I can use 2LPM if not moving at all. The minute I walk

around-on 4LPM my sats drop to the low 80's most of the time. If I try

to vacuum or clean the toilet ect they go to about 76%. It usually takes

me about 10-15 minutes to recover and sometimes I end up coughing like

crazy because I am so SOB. Looks like maybe Albany Med CenterThe doctor

does not even seemed concerned and told me just do the best I can on 2

when sitting and 4 otherwise.UGH! Maybe I just don't act sick enough

around them-what the heck do I have to do??? I wish I did live closer

and could travel to a major university for help. Looks like ALbany Med

Center for the next appt-then go from there. Still working on appt " s.

Thanks for your help-

>

> Diane 51 PF,PM Raynauds,Sjorgrens 2006 PH 2008

>

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Thank you to everyone for your suggestions and the names of doctors in NYC. Not

sure if I can make the trip but I will do my best to see what I can do. I am

starting with a new doctor in Albany who specializes in PH not just a pulmonary

doctor per say. I think his name is Dr Marmelstein-recommended from my

Rheumatologist. His office said they will perform the PFT and 6min walk to which

I haven't had in probably a year now. I now am getting like irregular

heartbeats at night when I first lie down to sleep and palpitations so I hope

for a soon appt. Have a good day!

Diane 51 PF,PM,Raynauds,Sjorgrens 2006 PH 2008

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