Re: Re: pulmonary hypertension in addition to asthma ++

July 30, 2011

Hi ,Honestly I didn't think you would be able to help but it doesn't hurt to ask; I was hoping that someone on the List could possibly direct me to the right asthma inhalers or drugs. I can't afford to give up because I'm suffering too much due to my not being able to use the Albuterol ....When I'm feeling like this do you feel that it is advisable to go walking in this heat for an hour or so or am I limited to being in my apartment and using my treadmill? My question really is for an asthmatic is outdoor walking better than indoor treadmill walking ..... I just bought a new yoga cd and this one is mostly relaxation and deep breathing/meditation and it did help my lungs to open up somewhat but unfortunately a short while later the lung pain/asthma set in again.Thanks again,SharonFrom:" Wolf" Subject:Re: Re: pulmonary hypertension in addition to asthma ++Date:July 30, 2011 4:12:43 PM EDTTo:asthma Hi Sharon;You have a lot going on and I'm sorry you are having so many challenges.I don't have any suggestions other than to try alternative methods of healing. I believe Western medicine has taken me as far as it knows how to go. I have now found a Naturopath who I believe will be able to work through the rest of whatever is going on. Now having said that, I must say that if you do go down that road, make sure you get someone who not only is educated and has excellent skills but connects with you and your symptoms. As in any profession, there are good and not so good ones. I've also found it is important for you to feel a connection with that person just like with western medicine. I send healing thoughts your way and make sure you are having the same. 2011/7/30 piaybyear Hello All,For those of you that are new, I'm 64, always belonged to a gym - went 3-4 times a week and was always in good shape. I'm thin to begin with and still am and have always tried to maintain my muscles. I'm not going to be able to keep my muscles if I can no longer exercise though. Anyhow in 1998 I was finally diagnosed with Sjogren's and SLE Lupus in my lungs and liver, pulmonary fibrosis, asthma and now the pulmonary hypertension. Then the alveoli (sacs surrounding the lungs that are supposed to have fluid in them) are very dry. In fact all of my mucus membranes are dry and that is what Sjogren's is. We have mucus membranes in our nose, mouth, esophagus, stomach and genitals. For the longest time I've noticed that my daily easy exercise I've been doing has become more difficult for me and now seems to be impossible to do and I did not know why up until now. I thought I was having a heart attack a few weeks ago and called my pulmonologist who told me to to the ER which most of you know. They kept me there all day and then put me in a semi private room and continued testing. The last test was the echo cardiogram and the doctor and technicians reviewing the test told me that I could go home but to call my pulmonologist. I made an appointment but with this awful heat I canceled it. Right after I did that my pulm. called me and told me not to wait for too long and to come into see him. He told me that I have some pulmonary hypertension and advised me to see a specialist for it. I am waiting for that office to call me back with an appointment. I was always able to exercise for 1 - 1 1/2 hours of easy exercise including hatha yoga but now I can't. Also I would do very light aerobics for maybe 10 minutes. On my cable there is an exercise program that I always loved and would do everyday - the program is called Gilaad and would miss it terribly if I couldn't do it ever again. Most days though I would only exercise for not even for 1/2 hr. and had to stop because I had what felt like the onset of a heart attack. Then the constriction would start and that probably is the asthma???? It feels like I'm being squeezed on the sides and then it becomes very stiff. The other pain is in the top part of my chest which I was told could be angina but my pulm. is very leery of having me do the test. That was told to me in the hospital but when I saw him in his office, again he said that the test to see how bad my pressure is (pulmonary hypertension) is also a dangerous test for me to have. I believe the reason is because my blood takes much longer to coagulate and that I could bleed to death. EIther that or else I have too many health problems and am a high risk patient and no one wants to risk tests or surgery. A major problem is that I have controlled epilepsy and whenever I would use my Pro Air Albuterol I would be borderline seizures and so I have stayed away from it. Pulm. told me to use it every 4 hours and I was only using it once a day and that amount wasn't going to help me but there's nothing I can do about it. I wish there was something else that I could use but all the inhalers cause the same problem(s). If any of you have any suggestions would you be good enough to let me know - I would greatly appreciate it. I'm so used to being short of breath and I am right now - even though I'm just sitting here and typing. The pain and squeezing on the side of my lungs don't want to leave me alone unless I'm sitting and watching tv and resting on soft pillows. I've been on 5mg. Prednisone for a good 10 years now but started out on 60mg. and it took me 2 1/2 yrs. until I was able to get down to a lower level. Also I use Nasacort AQ before I go to sleep which does help me to breathe. I'm also taking Methotrexate (pill form) 4 pills once a week.What I don't understand is that I do not feel that I need oxygen and no doctor ever suggested that I need it. In fact when they tested my oxgen with the finger monitor/test I'm always at 100% or 98% but when I went for the pulmonary function test (PFT) in the beginning (14 years ago) it was very poor. I don't understand the numbers and so I asked someone from 1-100 what my breathing was back then and I was told it was 33%. Now I'm sure it's so much better. Even my rheumatologist can't answer the question as to what is causing my shortness of breath because it could be the Sjogren's, Lupus or the Asthma. That's why I could never tell if or when I needed to use the Albuterol. Anyhow, I don't know what I'm going to do because the Prednisone gave me the worst case of Osteoporosis and if I do not exercise then my bone density is going to be the worst ever which could cause me more problems. The next time I see my rheumy she will be giving it to me so we'll see what it is. Meanwhile if I don't exercise my lungs will be so much worse and I know the importance of exercise. When I was reading up on Pulmonary Hypertension it did say that many people can not exercise with the problem.I don't know what this is leading to but I'm very unhappy about it and hope that someone reading my e-mail might have another suggestion as to what I can use for my lung constriction/pain.Thanks so much,Sharon from NYMadeline:I hope you don't mind if I bother you again,Since my test is not until September, are there any suggestions you have that I could start working on now especially to allow my exercising to be easier? Actually the exercising is pretty easy it is the difficulty breathing after that is tough. . I would really appreciate it.Anyone else feel free to jump in as well.thanks.-- Take care,-- Take care,

July 30, 2011

I'm just wondering if it's the albuterol or something else in the inhalers. Have you tried albuterol in a nebulizer yet? That might be something to check into with your doctor., Co-ModeratorTo: asthma ; asthma Sent: Saturday, July 30, 2011 5:05 PMSubject: Re: Re: pulmonary

hypertension in addition to asthma ++

Hi ,Honestly I didn't think you would be able to help but it doesn't hurt to ask; I was hoping that someone on the List could possibly direct me to the right asthma inhalers or drugs. I can't afford to give up because I'm suffering too much due to my not being able to use the Albuterol ....When I'm feeling like this do you feel that it is advisable to go walking in this heat for an hour or so or am I limited to being in my apartment and using my treadmill? My question really is for an asthmatic is outdoor walking better than indoor treadmill walking ..... I just bought a new yoga cd and this one is mostly

relaxation and deep breathing/meditation and it did help my lungs to open up somewhat but unfortunately a short while later the lung pain/asthma set in again.Thanks again,SharonFrom:" Wolf" Subject:Re: Re: pulmonary hypertension in addition to asthma ++Date:July 30, 2011 4:12:43 PM EDTTo:asthma Hi Sharon;You have a lot going on and I'm sorry you are having so many challenges.I don't have any suggestions other than to try alternative methods of healing. I believe Western medicine has taken me as far as it knows how to go. I have now found a Naturopath who I believe will be able to work through the rest of whatever is going on. Now having said that, I must say that if you do go down that road, make

sure you get someone who not only is educated and has excellent skills but connects with you and your symptoms. As in any profession, there are good and not so good ones. I've also found it is important for you to feel a connection with that person just like with western medicine. I send healing thoughts your way and make sure you are having the same. 2011/7/30 piaybyear Hello All,For those of you that are new, I'm 64, always belonged to a gym - went 3-4 times a week and was always in good shape. I'm thin to begin with and still am and have always tried to maintain my muscles. I'm not going to be able to keep my muscles if I can no longer exercise though. Anyhow in 1998 I was finally diagnosed with Sjogren's and SLE Lupus in my lungs and liver, pulmonary fibrosis, asthma and now the pulmonary hypertension. Then the alveoli (sacs surrounding the lungs that are supposed to have fluid in them) are very dry. In fact all of my mucus membranes are dry and that is what Sjogren's is. We have mucus membranes in our nose, mouth, esophagus, stomach and genitals. For the longest time I've noticed that my daily easy exercise I've been

doing has become more difficult for me and now seems to be impossible to do and I did not know why up until now. I thought I was having a heart attack a few weeks ago and called my pulmonologist who told me to to the ER which most of you know. They kept me there all day and then put me in a semi private room and continued testing. The last test was the echo cardiogram and the doctor and technicians reviewing the test told me that I could go home but to call my pulmonologist. I made an appointment but with this awful heat I canceled it. Right after I did that my pulm. called me and told me not to wait for too long and to come into see him. He told me that I have some pulmonary hypertension and advised me to see a specialist for it. I am waiting for that office to call me back with an appointment. I was always able to exercise for 1 - 1 1/2 hours of easy exercise

including hatha yoga but now I can't. Also I would do very light aerobics for maybe 10 minutes. On my cable there is an exercise program that I always loved and would do everyday - the program is called Gilaad and would miss it terribly if I couldn't do it ever again. Most days though I would only exercise for not even for 1/2 hr. and had to stop because I had what felt like the onset of a heart attack. Then the constriction would start and that probably is the asthma???? It feels like I'm being squeezed on the sides and then it becomes very stiff. The other pain is in the top part of my chest which I was told could be angina but my pulm. is very leery of having me do the test. That was told to me in the hospital but when I saw him in his office, again he said that the test to see how bad my pressure is (pulmonary hypertension) is also a dangerous test for me to have. I believe the reason is because my

blood takes much longer to coagulate and that I could bleed to death. EIther that or else I have too many health problems and am a high risk patient and no one wants to risk tests or surgery. A major problem is that I have controlled epilepsy and whenever I would use my Pro Air Albuterol I would be borderline seizures and so I have stayed away from it. Pulm. told me to use it every 4 hours and I was only using it once a day and that amount wasn't going to help me but there's nothing I can do about it. I wish there was something else that I could use but all the inhalers cause the same problem(s). If any of you have any suggestions would you be good enough to let me know - I would greatly appreciate it. I'm so used to being short of breath and I am right now - even though I'm just sitting here and typing. The pain and squeezing on the side of my lungs don't want to leave me

alone unless I'm sitting and watching tv and resting on soft pillows. I've been on 5mg. Prednisone for a good 10 years now but started out on 60mg. and it took me 2 1/2 yrs. until I was able to get down to a lower level. Also I use Nasacort AQ before I go to sleep which does help me to breathe. I'm also taking Methotrexate (pill form) 4 pills once a week.What I don't understand is that I do not feel that I need oxygen and no doctor ever suggested that I need it. In fact when they tested my oxgen with the finger monitor/test I'm always at 100% or 98% but when I went for the pulmonary function test (PFT) in the beginning (14 years ago) it was very poor. I don't understand the numbers and so I asked someone from 1-100 what my breathing was back then and I was told it was 33%. Now I'm sure it's so much better. Even my rheumatologist can't answer the question as to what is causing my

shortness of breath because it could be the Sjogren's, Lupus or the Asthma. That's why I could never tell if or when I needed to use the Albuterol. Anyhow, I don't know what I'm going to do because the Prednisone gave me the worst case of Osteoporosis and if I do not exercise then my bone density is going to be the worst ever which could cause me more problems. The next time I see my rheumy she will be giving it to me so we'll see what it is. Meanwhile if I don't exercise my lungs will be so much worse and I know the importance of exercise. When I was reading up on Pulmonary Hypertension it did say that many people can not exercise with the problem.I don't know what this is leading to but I'm very unhappy about it and hope that someone reading my e-mail might have another suggestion as to what I can use for my lung

constriction/pain.Thanks so much,Sharon from NYMadeline:I hope you don't mind if I bother you again,Since my test is not until September, are there any suggestions you have that I could start working on now especially to allow my exercising to be easier? Actually the exercising is pretty easy it is the difficulty breathing after that is tough. . I would really appreciate it.Anyone else feel free to jump in as

well.thanks.-- Take care,-- Take care,

July 30, 2011

I have a heart condition so I don't use Albuterol, I use Xopenex sparingly so I know the feeling of avoiding using it even though you need it. It is also the reason I am having such trouble with the long acting beta antagonist. Your doctor is really the only one who should advise you on medication.

I'm not able to exercise right now, but when I do, I exercise inside because my asthma is allergy induced. Also, there was a lot of discussion about how the heat negatively effects asthma. Not sure if it would be a positive or a negative for you. I pushed exercise just a little thinking it would help and my body really didn't like it at all. So although I know working out is good for you, my body is clearly telling me no right now. I promised my body I would listen this time.

If you read the emails, there are so many combinations of drugs that people are taking to get it under control. I encourage you to keep going until you find someone or a medical team who work diligently to help make you better.

2011/7/30 piaybyear

Hi ,Honestly I didn't think you would be able to help but it doesn't hurt to ask; I was hoping that someone on the List could possibly direct me to the right asthma inhalers or drugs. I can't afford to give up because I'm suffering too much due to my not being able to use the Albuterol ....

When I'm feeling like this do you feel that it is advisable to go walking in this heat for an hour or so or am I limited to being in my apartment and using my treadmill? My question really is for an asthmatic is outdoor walking better than indoor treadmill walking .....

I just bought a new yoga cd and this one is mostly relaxation and deep breathing/meditation and it did help my lungs to open up somewhat but unfortunately a short while later the lung pain/asthma set in again.

Thanks again,Sharon

Subject:

Re: Re: pulmonary hypertension in addition to asthma ++

Date:July 30, 2011 4:12:43 PM EDT

To:asthma

Hi Sharon;You have a lot going on and I'm sorry you are having so many challenges.

I don't have any suggestions other than to try alternative methods of healing. I believe Western medicine has taken me as far as it knows how to go. I have now found a Naturopath who I believe will be able to work through the rest of whatever is going on.

Now having said that, I must say that if you do go down that road, make sure you get someone who not only is educated and has excellent skills but connects with you and your symptoms. As in any profession, there are good and not so good ones. I've also found it is important for you to feel a connection with that person just like with western medicine.

I send healing thoughts your way and make sure you are having the same. 2011/7/30 piaybyear

Hello All,

For those of you that are new, I'm 64, always belonged to a gym - went 3-4 times a week and was always in good shape. I'm thin to begin with and still am and have always tried to maintain my muscles. I'm not going to be able to keep my muscles if I can no longer exercise though. Anyhow in 1998 I was finally diagnosed with Sjogren's and SLE Lupus in my lungs and liver, pulmonary fibrosis, asthma and now the pulmonary hypertension. Then the alveoli (sacs surrounding the lungs that are supposed to have fluid in them) are very dry. In fact all of my mucus membranes are dry and that is what Sjogren's is. We have mucus membranes in our nose, mouth, esophagus, stomach and genitals.

For the longest time I've noticed that my daily easy exercise I've been doing has become more difficult for me and now seems to be impossible to do and I did not know why up until now. I thought I was having a heart attack a few weeks ago and called my pulmonologist who told me to to the ER which most of you know. They kept me there all day and then put me in a semi private room and continued testing. The last test was the echo cardiogram and the doctor and technicians reviewing the test told me that I could go home but to call my pulmonologist. I made an appointment but with this awful heat I canceled it. Right after I did that my pulm. called me and told me not to wait for too long and to come into see him. He told me that I have some pulmonary hypertension and advised me to see a specialist for it. I am waiting for that office to call me back with an appointment.

I was always able to exercise for 1 - 1 1/2 hours of easy exercise including hatha yoga but now I can't. Also I would do very light aerobics for maybe 10 minutes. On my cable there is an exercise program that I always loved and would do everyday - the program is called Gilaad and would miss it terribly if I couldn't do it ever again. Most days though I would only exercise for not even for 1/2 hr. and had to stop because I had what felt like the onset of a heart attack. Then the constriction would start and that probably is the asthma???? It feels like I'm being squeezed on the sides and then it becomes very stiff. The other pain is in the top part of my chest which I was told could be angina but my pulm. is very leery of having me do the test. That was told to me in the hospital but when I saw him in his office, again he said that the test to see how bad my pressure is (pulmonary hypertension) is also a dangerous test for me to have. I believe the reason is because my blood takes much longer to coagulate and that I could bleed to death. EIther that or else I have too many health problems and am a high risk patient and no one wants to risk tests or surgery.

A major problem is that I have controlled epilepsy and whenever I would use my Pro Air Albuterol I would be borderline seizures and so I have stayed away from it. Pulm. told me to use it every 4 hours and I was only using it once a day and that amount wasn't going to help me but there's nothing I can do about it. I wish there was something else that I could use but all the inhalers cause the same problem(s). If any of you have any suggestions would you be good enough to let me know - I would greatly appreciate it.

I'm so used to being short of breath and I am right now - even though I'm just sitting here and typing. The pain and squeezing on the side of my lungs don't want to leave me alone unless I'm sitting and watching tv and resting on soft pillows.

I've been on 5mg. Prednisone for a good 10 years now but started out on 60mg. and it took me 2 1/2 yrs. until I was able to get down to a lower level. Also I use Nasacort AQ before I go to sleep which does help me to breathe. I'm also taking Methotrexate (pill form) 4 pills once a week.

What I don't understand is that I do not feel that I need oxygen and no doctor ever suggested that I need it. In fact when they tested my oxgen with the finger monitor/test I'm always at 100% or 98% but when I went for the pulmonary function test (PFT) in the beginning (14 years ago) it was very poor. I don't understand the numbers and so I asked someone from 1-100 what my breathing was back then and I was told it was 33%. Now I'm sure it's so much better. Even my rheumatologist can't answer the question as to what is causing my shortness of breath because it could be the Sjogren's, Lupus or the Asthma. That's why I could never tell if or when I needed to use the Albuterol.

Anyhow, I don't know what I'm going to do because the Prednisone gave me the worst case of Osteoporosis and if I do not exercise then my bone density is going to be the worst ever which could cause me more problems. The next time I see my rheumy she will be giving it to me so we'll see what it is. Meanwhile if I don't exercise my lungs will be so much worse and I know the importance of exercise. When I was reading up on Pulmonary Hypertension it did say that many people can not exercise with the problem.

I don't know what this is leading to but I'm very unhappy about it and hope that someone reading my e-mail might have another suggestion as to what I can use for my lung constriction/pain.

Thanks so much,Sharon from NY

Madeline:I hope you don't mind if I bother you again,

Since my test is not until September, are there any suggestions you have that I could start working on now especially to allow my exercising to be easier? Actually the exercising is pretty easy it is the difficulty breathing after that is tough. . I would really appreciate it.

Anyone else feel free to jump in as well.thanks.

-- Take care,

July 30, 2011

, my pulmonologist insisted that the Albuterol does not cause seizures but each time I used it I would have that "almost" kind of feeling like I was about to go into one and thankfully I did not. When I told him that I have many Sites that indicated that there is a possibility that it could them he was in total denial. I am aware that there are three different Albuterols on the market and called two different pharmacists and neither one of them could tell me that there was one form or another of Albuterol that does not state it may cause seizures. Off the top of my head, Drugs.com listed seizures/epilepsy as their 2nd or 3rd precaution and when I told him, he said to me that the ProAir Albuterol does not say that it can or might cause them. I'm at wit's end because I need an inhaler in the worst way. Also, I called the National Jewish Line which is known for lung problems and the nurse that spoke to me looked in her book and again it stated that Albuterol can or does cause seizures but my pulmonologist won't believe me..... I'm hoping that when I meet with the Pulmonary Hypertension specialist that she may be able to come up with another suggestion.If anything else comes to you please let me know ....Thanks so much,Sharon From:" Canter" Subject:Re: Re: pulmonary hypertension in addition to asthma ++Date:July 30, 2011 5:16:36 PM EDTTo:"asthma " <asthma >I'm just wondering if it's the albuterol or something else in the inhalers. Have you tried albuterol in a nebulizer yet? That might be something to check into with your doctor., Co-ModeratorTo: asthma ; asthma Sent: Saturday, July 30, 2011 5:05 PMSubject: Re: Re: pulmonary hypertension in addition to asthma ++ Hi ,Honestly I didn't think you would be able to help but it doesn't hurt to ask; I was hoping that someone on the List could possibly direct me to the right asthma inhalers or drugs. I can't afford to give up because I'm suffering too much due to my not being able to use the Albuterol ....When I'm feeling like this do you feel that it is advisable to go walking in this heat for an hour or so or am I limited to being in my apartment and using my treadmill? My question really is for an asthmatic is outdoor walking better than indoor treadmill walking ..... I just bought a new yoga cd and this one is mostly relaxation and deep breathing/meditation and it did help my lungs to open up somewhat but unfortunately a short while later the lung pain/asthma set in again.Thanks again,SharonFrom:" Wolf" Subject:Re: Re: pulmonary hypertension in addition to asthma ++Date:July 30, 2011 4:12:43 PM EDTTo:asthma Hi Sharon;You have a lot going on and I'm sorry you are having so many challenges.I don't have any suggestions other than to try alternative methods of healing. I believe Western medicine has taken me as far as it knows how to go. I have now found a Naturopath who I believe will be able to work through the rest of whatever is going on. Now having said that, I must say that if you do go down that road, make sure you get someone who not only is educated and has excellent skills but connects with you and your symptoms. As in any profession, there are good and not so good ones. I've also found it is important for you to feel a connection with that person just like with western medicine. I send healing thoughts your way and make sure you are having the same. 2011/7/30 piaybyear Hello All,For those of you that are new, I'm 64, always belonged to a gym - went 3-4 times a week and was always in good shape. I'm thin to begin with and still am and have always tried to maintain my muscles. I'm not going to be able to keep my muscles if I can no longer exercise though. Anyhow in 1998 I was finally diagnosed with Sjogren's and SLE Lupus in my lungs and liver, pulmonary fibrosis, asthma and now the pulmonary hypertension. Then the alveoli (sacs surrounding the lungs that are supposed to have fluid in them) are very dry. In fact all of my mucus membranes are dry and that is what Sjogren's is. We have mucus membranes in our nose, mouth, esophagus, stomach and genitals. For the longest time I've noticed that my daily easy exercise I've been doing has become more difficult for me and now seems to be impossible to do and I did not know why up until now. I thought I was having a heart attack a few weeks ago and called my pulmonologist who told me to to the ER which most of you know. They kept me there all day and then put me in a semi private room and continued testing. The last test was the echo cardiogram and the doctor and technicians reviewing the test told me that I could go home but to call my pulmonologist. I made an appointment but with this awful heat I canceled it. Right after I did that my pulm. called me and told me not to wait for too long and to come into see him. He told me that I have some pulmonary hypertension and advised me to see a specialist for it. I am waiting for that office to call me back with an appointment. I was always able to exercise for 1 - 1 1/2 hours of easy exercise including hatha yoga but now I can't. Also I would do very light aerobics for maybe 10 minutes. On my cable there is an exercise program that I always loved and would do everyday - the program is called Gilaad and would miss it terribly if I couldn't do it ever again. Most days though I would only exercise for not even for 1/2 hr. and had to stop because I had what felt like the onset of a heart attack. Then the constriction would start and that probably is the asthma???? It feels like I'm being squeezed on the sides and then it becomes very stiff. The other pain is in the top part of my chest which I was told could be angina but my pulm. is very leery of having me do the test. That was told to me in the hospital but when I saw him in his office, again he said that the test to see how bad my pressure is (pulmonary hypertension) is also a dangerous test for me to have. I believe the reason is because my blood takes much longer to coagulate and that I could bleed to death. EIther that or else I have too many health problems and am a high risk patient and no one wants to risk tests or surgery. A major problem is that I have controlled epilepsy and whenever I would use my Pro Air Albuterol I would be borderline seizures and so I have stayed away from it. Pulm. told me to use it every 4 hours and I was only using it once a day and that amount wasn't going to help me but there's nothing I can do about it. I wish there was something else that I could use but all the inhalers cause the same problem(s). If any of you have any suggestions would you be good enough to let me know - I would greatly appreciate it. I'm so used to being short of breath and I am right now - even though I'm just sitting here and typing. The pain and squeezing on the side of my lungs don't want to leave me alone unless I'm sitting and watching tv and resting on soft pillows. I've been on 5mg. Prednisone for a good 10 years now but started out on 60mg. and it took me 2 1/2 yrs. until I was able to get down to a lower level. Also I use Nasacort AQ before I go to sleep which does help me to breathe. I'm also taking Methotrexate (pill form) 4 pills once a week.What I don't understand is that I do not feel that I need oxygen and no doctor ever suggested that I need it. In fact when they tested my oxgen with the finger monitor/test I'm always at 100% or 98% but when I went for the pulmonary function test (PFT) in the beginning (14 years ago) it was very poor. I don't understand the numbers and so I asked someone from 1-100 what my breathing was back then and I was told it was 33%. Now I'm sure it's so much better. Even my rheumatologist can't answer the question as to what is causing my shortness of breath because it could be the Sjogren's, Lupus or the Asthma. That's why I could never tell if or when I needed to use the Albuterol. Anyhow, I don't know what I'm going to do because the Prednisone gave me the worst case of Osteoporosis and if I do not exercise then my bone density is going to be the worst ever which could cause me more problems. The next time I see my rheumy she will be giving it to me so we'll see what it is. Meanwhile if I don't exercise my lungs will be so much worse and I know the importance of exercise. When I was reading up on Pulmonary Hypertension it did say that many people can not exercise with the problem.I don't know what this is leading to but I'm very unhappy about it and hope that someone reading my e-mail might have another suggestion as to what I can use for my lung constriction/pain.Thanks so much,Sharon from NYMadeline:I hope you don't mind if I bother you again,Since my test is not until September, are there any suggestions you have that I could start working on now especially to allow my exercising to be easier? Actually the exercising is pretty easy it is the difficulty breathing after that is tough. . I would really appreciate it.Anyone else feel free to jump in as well.thanks.-- Take care,-- Take care,

July 30, 2011

Keep looking for someone who listens to you. We know our bodies best and the best doctor for you will respect that.

2011/7/30 piaybyear

, my pulmonologist insisted that the Albuterol does not cause seizures but each time I used it I would have that " almost " kind of feeling like I was about to go into one and thankfully I did not. When I told him that I have many Sites that indicated that there is a possibility that it could them he was in total denial. I am aware that there are three different Albuterols on the market and called two different pharmacists and neither one of them could tell me that there was one form or another of Albuterol that does not state it may cause seizures. Off the top of my head, Drugs.com listed seizures/epilepsy as their 2nd or 3rd precaution and when I told him, he said to me that the ProAir Albuterol does not say that it can or might cause them. I'm at wit's end because I need an inhaler in the worst way. Also, I called the National Jewish Line which is known for lung problems and the nurse that spoke to me looked in her book and again it stated that Albuterol can or does cause seizures but my pulmonologist won't believe me..... I'm hoping that when I meet with the Pulmonary Hypertension specialist that she may be able to come up with another suggestion.

If anything else comes to you please let me know ....Thanks so much,Sharon

Subject:

Re: Re: pulmonary hypertension in addition to asthma ++

Date:July 30, 2011 5:16:36 PM EDT

To: " asthma " <asthma >

I'm just wondering if it's the albuterol or something else in the inhalers. Have you tried albuterol in a nebulizer yet? That might be something to check into with your doctor., Co-Moderator

From: piaybyear To: asthma ; asthma

Sent: Saturday, July 30, 2011 5:05 PMSubject: Re: Re: pulmonary hypertension in addition to asthma ++

Hi ,Honestly I didn't think you would be able to help but it doesn't hurt to ask; I was hoping that someone on the List could possibly direct me to the right asthma inhalers or drugs. I can't afford to give up because I'm suffering too much due to my not being able to use the Albuterol ....

When I'm feeling like this do you feel that it is advisable to go walking in this heat for an hour or so or am I limited to being in my apartment and using my treadmill? My question really is for an asthmatic is outdoor walking better than indoor treadmill walking .....

I just bought a new yoga cd and this one is mostly relaxation and deep breathing/meditation and it did help my lungs to open up somewhat but unfortunately a short while later the lung pain/asthma set in again.

Thanks again,Sharon

From:

" Wolf "

Subject:Re: Re: pulmonary hypertension in addition to asthma ++

Date:

July 30, 2011 4:12:43 PM EDTTo:

asthma

Hi Sharon;You have a lot going on and I'm sorry you are having so many challenges.

I don't have any suggestions other than to try alternative methods of healing. I believe Western medicine has taken me as far as it knows how to go. I have now found a Naturopath who I believe will be able to work through the rest of whatever is going on.

Now having said that, I must say that if you do go down that road, make sure you get someone who not only is educated and has excellent skills but connects with you and your symptoms. As in any profession, there are good and not so good ones. I've also found it is important for you to feel a connection with that person just like with western medicine.

I send healing thoughts your way and make sure you are having the same. 2011/7/30 piaybyear

Hello All,For those of you that are new, I'm 64, always belonged to a gym - went 3-4 times a week and was always in good shape. I'm thin to begin with and still am and have always tried to maintain my muscles. I'm not going to be able to keep my muscles if I can no longer exercise though. Anyhow in 1998 I was finally diagnosed with Sjogren's and SLE Lupus in my lungs and liver, pulmonary fibrosis, asthma and now the pulmonary hypertension. Then the alveoli (sacs surrounding the lungs that are supposed to have fluid in them) are very dry. In fact all of my mucus membranes are dry and that is what Sjogren's is. We have mucus membranes in our nose, mouth, esophagus, stomach and genitals.