Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Thank you so much for writing me back. I think joining this group is going to help me since everyone else I talk to about this disease looks at me like I'm crazy. It looks like were all in the same boat together just trying to get by day to day. It's so frustrating that the doctors and insurance companies cant do anything for us. My husband does the same thing when people ask him how he's doing and he says "okay". Because who really wants to go into the long drawn out details. It's too depressing. Plus everyday is different. I cant believe you have had to live with this for 11 years. We are only on our first year and it seems like an eternity. Stay strong and i will also keep you in my prayers. Thanks again for your kind words. Lorimarla wrote: I am so sorry to hear about your husband, this is not a fun disease, and made even worse when the insurance company thinks they know more then the doctors. I was just refused Remicade treatment from my insurance co too, stated the same reason. Will I will just keep on trying, until they say "alright already". I am sorry for all your husband is going through, it is not easy, however, I was able to get off steroids with the treatment of Plaquanil and Methotrexate, I was on steroids for 3 years, and man that was a nightmare, and I hope to never go on them again, so I know the mixed feeling he has about the drug, I call it my love/hate relationship. I have had Sarcoid for 11 years now, first lungs, then systemic, then neuro. so it was one thing to the next. I am hanging in there with the Plaquanil and the Metotrexate, and of course many of other drugs for pain, especially nerve pain, but now joint pain too. I say keep at the insurance company on the Remicade, it sounds like our best bet!! Yes it is very hard for others to understand what we are going through, because like you said we don't really look sick, we just feel like hell. I have a friend with type 1 diabetes, and stress causes it to go crazy, and she has been under a lot of stress, and when she ask me how I feel and i say fine, and i ask her and she says fine, then we laugh and look at each other, and say, "lier" :-) . cuz we know how the other feels. but that always seems to be the answer, I hate to say, well to be honest I feel like hell! I will keep your husband in my prayers, do know that we know what he is going through and it is tough seeing your love one go through this. Please keep us informed, and feel free to ask, or just rant anytime, that's what we are here for, this group of people is the best you will find anymore, and very knowledgeable about this disease. God Bless, Marla My husband was diagnosed with neurosarcoidosis last July. He had been suffering numbness, facial palsy, seizures, migranes, hallucination and all the bad stuff that comes with this awful disease. He was very inflamed when we finally got him to the Mayo Clinic were they diagnosed him. They told us he would probably have to be on meds for 12 to 16 months before he would be somewhat back to normal. Well he has been on meds for 14months now and has got somewhat better but defineatly not living a normal life. He takes Kepra for the seizures and Prednisone for the brain swelling. He is also on methotrexate which makes him very sick to his stomach every weekend. Having been on prednisone for so long he has suffered the side affects of weight gain, depression, high blood pressure, high colesteral, extreme mood swings and just started to get toxic with breakouts all over his skin. With all the side effects he decided to stop taking the prednisone and within a month all of his symtoms are coming back. We have been trying to get approved for remicaid which I hear works miracles when combined with methotrexate but was denied by the insurance company because it is still considered experimental. He cant go to work because he is always exhausted or has a head ache. Unfortunatly he is going back on the prednisone because nothing else seems to work. What worries us is is he going to die from the side affects of the prednisone first rather than the disease. No one understands what we go through because they see him and he doesn't look sick. Just like people suffering MS. He is tired of being sick and taking all of this medicine which doesnt make him feel any better only worse. Will this ever end. We have seen neurologist, rhuemetologist, specialist and no one has an answer because they still dont know what causes it. They only know to keep shoving steriods down our throat. I am tired and frustrated and cant keep living like this. Any help of advice would be greatly appreciated. I am trying to stay positive and strong but it gets harder every day I have to watch my husband hold his head and cry in pain and don't know what to do for him. HELP!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 I'm tempted to print out a stack of little cards with all my symptoms listed & just hand them out to those with inquiring minds. That's a great idea Rose, then you wouldn't have to say anything :-) . Marla I missed the initial letter about this, but Marla, your reply gave me some thoughts. If the MTX is making him so sick, ask if he can have it in injection form. I forget who, but somebody of the list injects herself every week. This also bypasses the liver, decreasing the risk of liver toxicity. Also, whoever wrote the first letter, have you looked at our Links section? There are lots of good resources there. One you may especially read and print out for his doctor is the Pro & Con debate on Prednisone, which also briefly discusses alternative treatments. Have any of his doctors suggested Cytoxan? When I saw Baughman in May, he suggested I take either Cytoxan or Remicade. Most insurance covers Cytoxan. I certainly understand your frustration at the situation. It's scary to experience these complications & worry whether they will result in permanent damage if not treated effectively, but also worry about damage from the drugs themselves. Some of it just requires that you just trust your instincts. Marla, regarding people who ask how you are feeling, my stock answer has become, "Good enough." I'm not pretending I'm fine, and they don't have to hear a litany of complaints. I'm tempted to print out a stack of little cards with all my symptoms listed & just hand them out to those with inquiring minds. Ramblin' Rose Moderator From: marla Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: My Husband Date: Fri, 11 Nov 2005 00:33:29 -0800 I am so sorry to hear about your husband, this is not a fun disease, and made even worse when the insurance company thinks they know more then the doctors. I was just refused Remicade treatment from my insurance co too, stated the same reason. Will I will just keep on trying, until they say "alright already". I am sorry for all your husband is going through, it is not easy, however, I was able to get off steroids with the treatment of Plaquanil and Methotrexate, I was on steroids for 3 years, and man that was a nightmare, and I hope to never go on them again, so I know the mixed feeling he has about the drug, I call it my love/hate relationship. I have had Sarcoid for 11 years now, first lungs, then systemic, then neuro. so it was one thing to the next. I am hanging in there with the Plaquanil and the Metotrexate, and of course many of other drugs for pain, especially nerve pain, but now joint pain too. I say keep at the insurance company on the Remicade, it sounds like our best bet!! Yes it is very hard for others to understand what we are going through, because like you said we don't really look sick, we just feel like hell. I have a friend with type 1 diabetes, and stress causes it to go crazy, and she has been under a lot of stress, and when she ask me how I feel and i say fine, and i ask her and she says fine, then we laugh and look at each other, and say, "lier" :-) . cuz we know how the other feels. but that always seems to be the answer, I hate to say, well to be honest I feel like hell! I will keep your husband in my prayers, do know that we know what he is going through and it is tough seeing your love one go through this. Please keep us informed, and feel free to ask, or just rant anytime, that's what we are here for, this group of people is the best you will find anymore, and very knowledgeable about this disease. God Bless, Marla My husband was diagnosed with neurosarcoidosis last July. He had been suffering numbness, facial palsy, seizures, migranes, hallucination and all the bad stuff that comes with this awful disease. He was very inflamed when we finally got him to the Mayo Clinic were they diagnosed him. They told us he would probably have to be on meds for 12 to 16 months before he would be somewhat back to normal. Well he has been on meds for 14months now and has got somewhat better but defineatly not living a normal life. He takes Kepra for the seizures and Prednisone for the brain swelling. He is also on methotrexate which makes him very sick to his stomach every weekend. Having been on prednisone for so long he has suffered the side affects of weight gain, depression, high blood pressure, high colesteral, extreme mood swings and just started to get toxic with breakouts all over his skin. With all the side effects he decided to stop taking the prednisone and within a month all of his symtoms are coming back. We have been trying to get approved for remicaid which I hear works miracles when combined with methotrexate but was denied by the insurance company because it is still considered experimental. He cant go to work because he is always exhausted or has a head ache. Unfortunatly he is going back on the prednisone because nothing else seems to work. What worries us is is he going to die from the side affects of the prednisone first rather than the disease. No one understands what we go through because they see him and he doesn't look sick. Just like people suffering MS. He is tired of being sick and taking all of this medicine which doesnt make him feel any better only worse. Will this ever end. We have seen neurologist, rhuemetologist, specialist and no one has an answer because they still dont know what causes it. They only know to keep shoving steriods down our throat. I am tired and frustrated and cant keep living like this. Any help of advice would be greatly appreciated. I am trying to stay positive and strong but it gets harder every day I have to watch my husband hold his head and cry in pain and don't know what to do for him. HELP!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 PRAYER IS THE KEY! Pray at all times my dear friend. That is what you are to do. It is truly the main source of you strength and peace of mind. It will not make everything suddenly disappear, but it will give you comfort and courage to keep on going. So try this daily, several times throughout the day. And watch how it takes you from one moment to the next. And that is one of the keys to surviving this awful " storm " that all of us are in. I say this because I too have experienced some of the hardships your husband is experiencing, especially with the prednisone. I have recently refused the IV treatment for the same reasons you husband has. So I do know first hand the impact of this decision. The toll this disease has taken on my wife and family is very painful. So, I say this to say, " I am so sorry this has happened to us. " God bless you, your husband and your entire family with blessings of healing and strength. Your brother and friend in Jesus. Amen In Christ, > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 PRAYER IS THE KEY! Pray at all times my dear friend. That is what you are to do. It is truly the main source of you strength and peace of mind. It will not make everything suddenly disappear, but it will give you comfort and courage to keep on going. So try this daily, several times throughout the day. And watch how it takes you from one moment to the next. And that is one of the keys to surviving this awful " storm " that all of us are in. I say this because I too have experienced some of the hardships your husband is experiencing, especially with the prednisone. I have recently refused the IV treatment for the same reasons you husband has. So I do know first hand the impact of this decision. The toll this disease has taken on my wife and family is very painful. So, I say this to say, " I am so sorry this has happened to us. " God bless you, your husband and your entire family with blessings of healing and strength. Your brother and friend in Jesus. Amen In Christ, > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 PRAYER IS THE KEY! Pray at all times my dear friend. That is what you are to do. It is truly the main source of you strength and peace of mind. It will not make everything suddenly disappear, but it will give you comfort and courage to keep on going. So try this daily, several times throughout the day. And watch how it takes you from one moment to the next. And that is one of the keys to surviving this awful " storm " that all of us are in. I say this because I too have experienced some of the hardships your husband is experiencing, especially with the prednisone. I have recently refused the IV treatment for the same reasons you husband has. So I do know first hand the impact of this decision. The toll this disease has taken on my wife and family is very painful. So, I say this to say, " I am so sorry this has happened to us. " God bless you, your husband and your entire family with blessings of healing and strength. Your brother and friend in Jesus. Amen In Christ, > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Please have your husband to ask about using an injectable Methotrexate instead of taking the pills. I could not take it orally and have not had any nausea with the injection. Hope it is possible for him .... Ruth > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Please have your husband to ask about using an injectable Methotrexate instead of taking the pills. I could not take it orally and have not had any nausea with the injection. Hope it is possible for him .... Ruth > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Please have your husband to ask about using an injectable Methotrexate instead of taking the pills. I could not take it orally and have not had any nausea with the injection. Hope it is possible for him .... Ruth > > My husband was diagnosed with neurosarcoidosis last July. He had > been suffering numbness, facial palsy, seizures, migranes, > hallucination and all the bad stuff that comes with this awful > disease. He was very inflamed when we finally got him to the Mayo > Clinic were they diagnosed him. They told us he would probably have > to be on meds for 12 to 16 months before he would be somewhat back > to normal. Well he has been on meds for 14months now and has got > somewhat better but defineatly not living a normal life. He takes > Kepra for the seizures and Prednisone for the brain swelling. He is > also on methotrexate which makes him very sick to his stomach every > weekend. Having been on prednisone for so long he has suffered the > side affects of weight gain, depression, high blood pressure, high > colesteral, extreme mood swings and just started to get toxic with > breakouts all over his skin. With all the side effects he decided > to stop taking the prednisone and within a month all of his symtoms > are coming back. We have been trying to get approved for remicaid > which I hear works miracles when combined with methotrexate but was > denied by the insurance company because it is still considered > experimental. He cant go to work because he is always exhausted or > has a head ache. Unfortunatly he is going back on the prednisone > because nothing else seems to work. What worries us is is he going > to die from the side affects of the prednisone first rather than the > disease. No one understands what we go through because they see him > and he doesn't look sick. Just like people suffering MS. He is > tired of being sick and taking all of this medicine which doesnt > make him feel any better only worse. Will this ever end. We have > seen neurologist, rhuemetologist, specialist and no one has an > answer because they still dont know what causes it. They only know > to keep shoving steriods down our throat. I am tired and frustrated > and cant keep living like this. Any help of advice would be greatly > appreciated. I am trying to stay positive and strong but it gets > harder every day I have to watch my husband hold his head and cry in > pain and don't know what to do for him. HELP!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2005 Report Share Posted November 14, 2005 Marla Dr Baughman has me on Cytoxan. It's not too bad & I think it is going to help. --- Rose mamadogrose@...> wrote: --------------------------------- I missed the initial letter about this, but Marla, your reply gave me some thoughts. If the MTX is making him so sick, ask if he can have it in injection form. I forget who, but somebody of the list injects herself every week. This also bypasses the liver, decreasing the risk of liver toxicity. Also, whoever wrote the first letter, have you looked at our Links section? There are lots of good resources there. One you may especially read and print out for his doctor is the Pro & Con debate on Prednisone, which also briefly discusses alternative treatments. Have any of his doctors suggested Cytoxan? When I saw Baughman in May, he suggested I take either Cytoxan or Remicade. Most insurance covers Cytoxan. I certainly understand your frustration at the situation. It's scary to experience these complications & worry whether they will result in permanent damage if not treated effectively, but also worry about damage from the drugs themselves. Some of it just requires that you just trust your instincts. Marla, regarding people who ask how you are feeling, my stock answer has become, " Good enough. " I'm not pretending I'm fine, and they don't have to hear a litany of complaints. I'm tempted to print out a stack of little cards with all my symptoms listed & just hand them out to those with inquiring minds. Ramblin' Rose Moderator --------------------------------- Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: My Husband Date: Fri, 11 Nov 2005 00:33:29 -0800 I am so sorry to hear about your husband, this is not a fun disease, and made even worse when the insurance company thinks they know more then the doctors. I was just refused Remicade treatment from my insurance co too, stated the same reason. Will I will just keep on trying, until they say " alright already " . I am sorry for all your husband is going through, it is not easy, however, I was able to get off steroids with the treatment of Plaquanil and Methotrexate, I was on steroids for 3 years, and man that was a nightmare, and I hope to never go on them again, so I know the mixed feeling he has about the drug, I call it my love/hate relationship. I have had Sarcoid for 11 years now, first lungs, then systemic, then neuro. so it was one thing to the next. I am hanging in there with the Plaquanil and the Metotrexate, and of course many of other drugs for pain, especially nerve pain, but now joint pain too. I say keep at the insurance company on the Remicade, it sounds like our best bet!! Yes it is very hard for others to understand what we are going through, because like you said we don't really look sick, we just feel like hell. I have a friend with type 1 diabetes, and stress causes it to go crazy, and she has been under a lot of stress, and when she ask me how I feel and i say fine, and i ask her and she says fine, then we laugh and look at each other, and say, " lier " :-) . cuz we know how the other feels. but that always seems to be the answer, I hate to say, well to be honest I feel like hell! I will keep your husband in my prayers, do know that we know what he is going through and it is tough seeing your love one go through this. Please keep us informed, and feel free to ask, or just rant anytime, that's what we are here for, this group of people is the best you will find anymore, and very knowledgeable about this disease. God Bless, Marla My husband was diagnosed with neurosarcoidosis last July. He hadbeen suffering numbness, facial palsy, seizures, migranes,hallucination and all the bad stuff that comes with this awfuldisease. He was very inflamed when we finally got him to the MayoClinic were they diagnosed him. They told us he would probably haveto be on meds for 12 to 16 months before he would be somewhat backto normal. Well he has been on meds for 14months now and has gotsomewhat better but defineatly not living a normal life. He takesKepra for the seizures and Prednisone for the brain swelling. He isalso on methotrexate which makes him very sick to his stomach everyweekend. Having been on prednisone for so long he has suffered theside affects of weight gain, depression, high blood pressure, highcolesteral, extreme mood swings and just started to get toxic withbreakouts all over his skin. With all the side effects he decidedto stop taking the prednisone and within a month all of his symtomsare coming back. We have been trying to get approved for remicaidwhich I hear works miracles when combined with methotrexate but wasdenied by the insurance company because it is still consideredexperimental. He cant go to work because he is always exhausted orhas a head ache. Unfortunatly he is going back on the prednisonebecause nothing else seems to work. What worries us is is he goingto die from the side affects of the prednisone first rather than thedisease. No one understands what we go through because they see himand he doesn't look sick. Just like people suffering MS. He istired of being sick and taking all of this medicine which doesntmake him feel any better only worse. Will this ever end. We haveseen neurologist, rhuemetologist, specialist and no one has ananswer because they still dont know what causes it. They only knowto keep shoving steriods down our throat. I am tired and frustratedand cant keep living like this. Any help of advice would be greatlyappreciated. I am trying to stay positive and strong but it getsharder every day I have to watch my husband hold his head and cry inpain and don't know what to do for him. HELP!!------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Dear Laurie, I am so, so sorry to hear of the passing of your beloved Fred. Some of us are participating in trials so that maybe something one day will be found to control it maybe even find out what can cause it and maybe there will be something that will cure it. Yes, we all miss Joyce Dalton, who was our queen. She was a long time survivor and she also fought hard! She encouraged all of us to keep fighting! I am so glad that we can go back and read all of the posts on this site so we can remember those words from those who have passed on. It is so encouraging! Love & Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> > > ---> > > > > > > > > > > > > > > > > At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this> group.> Sincerely,> Laurie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Dear Laurie, I am so, so sorry to hear of the passing of your beloved Fred. Some of us are participating in trials so that maybe something one day will be found to control it maybe even find out what can cause it and maybe there will be something that will cure it. Yes, we all miss Joyce Dalton, who was our queen. She was a long time survivor and she also fought hard! She encouraged all of us to keep fighting! I am so glad that we can go back and read all of the posts on this site so we can remember those words from those who have passed on. It is so encouraging! Love & Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> > > ---> > > > > > > > > > > > > > > > > At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this> group.> Sincerely,> Laurie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Dear Laurie, I am so, so sorry to hear of the passing of your beloved Fred. Some of us are participating in trials so that maybe something one day will be found to control it maybe even find out what can cause it and maybe there will be something that will cure it. Yes, we all miss Joyce Dalton, who was our queen. She was a long time survivor and she also fought hard! She encouraged all of us to keep fighting! I am so glad that we can go back and read all of the posts on this site so we can remember those words from those who have passed on. It is so encouraging! Love & Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>> > > ---> > > > > > > > > > > > > > > > > At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this> group.> Sincerely,> Laurie> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Laurie, I am so very sorry for your loss. I am the patient here and dread that time for my husband. I remember seeing your address. I pray God to help you through and give you peace. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." ---At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this group.Sincerely,Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Laurie... I'm so sorry to hear about Fred. What a wonderful memory for you that his last words were to tell you he loves you... It is always sad when one is lost to this disease. God Bless... MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! My Husband --- At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this group. Sincerely, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009  Laurie- I'm so sorry to hear of Fred's death. It is a time of saddness and prayers. God Bless you. Blue Flyer, Joyce Re: My Husband Laurie, I am so very sorry for your loss. I am the patient here and dread that time for my husband.� I remember seeing your address. I pray God to help you through and give you peace. Love & Prayers, Peggy Florida, �IPF/UIP 2004 "I believe that friends are quiet angels�who lift us to our feet,� when our wings�have trouble remembering how to fly."� --- At one time my husband was briefly on this group I mainly would be on it and observe. �It was 2 1/2 years ago, he was in the hospital �and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce.� She was such a help to me and I was saddened about her passing.� I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred.� He was the love of my life and my best friend.� �I miss him beyond words.� The pain is unbearable.�� He was so worried the last year or so about a suffering death and suffocating�in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you"� I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it.� I thank everyone for the wealth of info I would gather from this group. Sincerely, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 I am sorry for your loss. However, I hope that the fact he was home, with the woman that he loved, and went peacefully in his sleep eases your pain a bit. Our thoughts and prayers are with you. Peace be with you, > > Subject: My Husband > To: " pf " breathe-support > > Date: Sunday, January 25, 2009, 2:54 PM > --- > > > > > > > > > > > > > > > > > At one time my husband was briefly on this group I mainly > would be on it and observe. It was 2 1/2 years ago, he was > in the hospital and I started I remember at the time Jocye > Dalton was so kind she would write to me personally my > husband has had his illness about the same time as Joyce. > She was such a help to me and I was saddened about her > passing. I just lost my husband to this disgusting pf > after 10 years he was home in our bed and went so peacefully > his name is Fred. He was the love of my life and my best > friend. I miss him beyond words. The pain is > unbearable. He was so worried the last year or so about > a suffering death and suffocating in the end he went so > peacefully I thank God for that and the last words he ever > spoke " I love you " I hope and pray one day they > find a cure for this terrible suffering disease and more > awareness and research goes into it. I thank everyone for > the wealth of info I would gather from this > group. > Sincerely, > Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 Dearest Laurie, I am so sorry to hear of of Fred's passing. He was so blessed to go the way he did. I pray that I am as fortunate when my time comes. May you always be surrounded by his love. Margaret To: Breathe-Support Sent: Sunday, January 25, 2009 11:12:40 AMSubject: Re: My HusbandLaurie, I am so very sorry for your loss. I am the patient here and dread that time for my husband. I remember seeing your address. I pray God to help you through and give you peace. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." --- At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this group. Sincerely, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2009 Report Share Posted January 27, 2009 Laurie, I am so sad to hear of your husband's passing, but so glad to know he went peacefully. I will be keeping you in my thoughts and prayers. God bless and keep you- R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: My HusbandTo: "pf" <breathe-support >Date: Sunday, January 25, 2009, 11:54 AM --- At one time my husband was briefly on this group I mainly would be on it and observe. It was 2 1/2 years ago, he was in the hospital and I started I remember at the time Jocye Dalton was so kind she would write to me personally my husband has had his illness about the same time as Joyce. She was such a help to me and I was saddened about her passing. I just lost my husband to this disgusting pf after 10 years he was home in our bed and went so peacefully his name is Fred. He was the love of my life and my best friend. I miss him beyond words. The pain is unbearable. He was so worried the last year or so about a suffering death and suffocating in the end he went so peacefully I thank God for that and the last words he ever spoke "I love you" I hope and pray one day they find a cure for this terrible suffering disease and more awareness and research goes into it. I thank everyone for the wealth of info I would gather from this group. Sincerely, Laurie Quote Link to comment Share on other sites More sharing options...
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