Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Hi, Dawn! What a bummer, to have a drug regimen that's working & then your liver has to start complaining! Unfortunately, we have to listen to our livers. I hope the Cellcept does well. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: dawnschwartz@...Date: Tue, 14 Sep 2010 04:23:24 -0700Subject: RE: Roll Call Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2010 Report Share Posted September 14, 2010 Thanks Rose! Me too! I took the cellcept before- the brand name drug worked great, but then the generic came out. Once I started on it, my symptoms started worsening. My insurance told me that the brand name med was no longer on their formulary since the generic came out. They said my copay for the brand name drug would be $941.00 per month....ugh! So now I am dealing with Roche to get the brand name med at an affordable price. I want to thank all of you for sharing your experiences and info- I learn so much here!!!! I hope things get better for everyone! To: neurosarcoidosis Sent: Tue, September 14, 2010 9:33:11 PMSubject: RE: RE: Roll Call Hi, Dawn! What a bummer, to have a drug regimen that's working & then your liver has to start complaining! Unfortunately, we have to listen to our livers. I hope the Cellcept does well. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: dawnschwartz@...Date: Tue, 14 Sep 2010 04:23:24 -0700Subject: RE: Roll Call Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2010 Report Share Posted September 15, 2010 Wow, , I can't believe you can plan a move! How did they know your husband had a brain tumor with no symptoms? That's kind of scary. You've had the heart problems for quite awhile, haven't you? I hope they can come up with something to help, short of a transplant. Would you be eligible for a transplant if that was the only option? Now help me out here--are you the gal who used to love the fast cars, or am I thinking of someone else? Don't overdo it with this house business. (You know I had to say it, right?!? Like when we tell our kids stuff & they're like, yeah, yeah, yeah.) Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: neurosarcoidosis From: mmommer@...Date: Wed, 15 Sep 2010 00:10:09 -0500Subject: roll call I'm OK I'm here hubby has sizable brain tumor no symptoms they did gamma knife radiation to it we will know in 6 months if it stopped the growth. MY heart failure is worse i have cardiac sarc, my body was holding fluid kind of gross if i pushed my finger in my ankle the finger print would just stay there.Ive had three open heart surgeries and my Mayo cardiologist said he needs to talk to his surgeon about me...... my ICD battery is also on the end of its battery......... Im ok most of the time but some times i cant breathe. Ive been busy trying to get my house ready to sell. found a house in NEB I really really want but it is another 5 more hrs away from my health team. I am 100 miles south of Mayo Rochester.........Its my dream home..... E. Mommer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2010 Report Share Posted September 17, 2010 I'm the speed demon Rose, but may be too. Gracious , I do know have a clue how you are doing all your doing. I know we have to do what we have to do, but please be careful.. They didn't make another one like you, and we like the original version best anyway. Your husband and you will be added to our prayer list if that is OK. The world needs true hero's like you, please take care of yourself. Connie (The other heart sarc) To: neurosarcoidosis Sent: Wed, September 15, 2010 10:33:09 AMSubject: RE: roll call Wow, , I can't believe you can plan a move! How did they know your husband had a brain tumor with no symptoms? That's kind of scary. You've had the heart problems for quite awhile, haven't you? I hope they can come up with something to help, short of a transplant. Would you be eligible for a transplant if that was the only option? Now help me out here--are you the gal who used to love the fast cars, or am I thinking of someone else? Don't overdo it with this house business. (You know I had to say it, right?!? Like when we tell our kids stuff & they're like, yeah, yeah, yeah.) Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: neurosarcoidosis From: mmommer@...Date: Wed, 15 Sep 2010 00:10:09 -0500Subject: roll callI'm OK I'm here hubby has sizable brain tumor no symptoms they did gamma knife radiation to it we will know in 6 months if it stopped the growth. MY heart failure is worse i have cardiac sarc, my body was holding fluid kind of gross if i pushed my finger in my ankle the finger print would just stay there.Ive had three open heart surgeries and my Mayo cardiologist said he needs to talk to his surgeon about me...... my ICD battery is also on the end of its battery......... Im ok most of the time but some times i cant breathe. Ive been busy trying to get my house ready to sell. found a house in NEB I really really want but it is another 5 more hrs away from my health team. I am 100 miles south of Mayo Rochester.........Its my dream home..... E. Mommer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2010 Report Share Posted September 17, 2010 Dawn not trying to beat the horse to death, but since your insurance will not pay for the Cellcept, you have a medication that you do not have insurance coverage for. That is the requirement for NeedyMeds, is that you do not have insurance to pay for a med(s) that you need. Have your doctor write the prescription and apply for it on NeedyMeds.org; I just pulled up the site and cellcept is available (the brand name cellcept). This is part of the note in regard to Cellcept: The Genentech Access to Care Foundation (GATCF) was created to help qualified patients with unmet medical needs who are uninsured or who have been denied coverage by their health plans obtain therapy. Therefore, patients who have no insurance or who's health plan has denied coverage for treatments can apply to GATCF to receive their medicine free of charge. To: Neurosarcoidosis Sent: Tue, September 14, 2010 6:56:23 PMSubject: Re: RE: Roll Call Thanks Rose! Me too! I took the cellcept before- the brand name drug worked great, but then the generic came out. Once I started on it, my symptoms started worsening. My insurance told me that the brand name med was no longer on their formulary since the generic came out. They said my copay for the brand name drug would be $941.00 per month....ugh! So now I am dealing with Roche to get the brand name med at an affordable price. I want to thank all of you for sharing your experiences and info- I learn so much here!!!! I hope things get better for everyone! To: neurosarcoidosis Sent: Tue, September 14, 2010 9:33:11 PMSubject: RE: RE: Roll Call Hi, Dawn! What a bummer, to have a drug regimen that's working & then your liver has to start complaining! Unfortunately, we have to listen to our livers. I hope the Cellcept does well. Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: Neurosarcoidosis From: dawnschwartz@...Date: Tue, 14 Sep 2010 04:23:24 -0700Subject: RE: Roll Call Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2010 Report Share Posted September 20, 2010 Hi ,I am so behind in my emails, I'm sorry to hear about your husband, I hope the gamma knife radiation is helpful. and I'm sad to hear you are dealing with so much of the Sarc monstor. it's hard once it hits the heart. Where in Nebraska did you find your Dream home, my husband is from Neb. so he's a die hard husker fan. you are in my thoughts and prayers, and I hope you have a lot of help on the move:) Blessings, Marla I'm OK I'm here hubby has sizable brain tumor no symptoms they did gamma knife radiation to it we will know in 6 months if it stopped the growth. MY heart failure is worse i have cardiac sarc, my body was holding fluid kind of gross if i pushed my finger in my ankle the finger print would just stay there.Ive had three open heart surgeries and my Mayo cardiologist said he needs to talk to his surgeon about me...... my ICD battery is also on the end of its battery......... Im ok most of the time but some times i cant breathe. Ive been busy trying to get my house ready to sell. found a house in NEB I really really want but it is another 5 more hrs away from my health team. I am 100 miles south of Mayo Rochester.........Its my dream home..... E. Mommer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2010 Report Share Posted September 20, 2010 Dawn, Hi, I am trying to catch up with my emails, this may take all day:) why do they keep doing MRIs, what are they looking for? I have neuro symptoms but my MRIs are all neg. So when I get a new neuro symptom, they say Sarc. And they say it's not worth repeating the MRIs, they don't show any lesions, my Neurologist said that it is very hard to see the granulomas on CT or MRIs, sometimes if they are big enough, but usually they are too small to see, so he can tell me where they are just by my symptoms. I have trouble walking, can't walk very far, can't lift my legs up off the floor at first, but I started using this Pilate rubber band like thing, I put my feet in the feet holder, and then the rubber band extends to my midsection, on that end is for my hands, I pull my feet up with my hands and it works, so it's making my legs stronger, and sometimes I can lift my feet up off the floor without the rubber band, but only like 2-5 times then they don't move again, it's crazy. I'm so technical, lol. Anyway thought I would share my Neuro's thoughts on testing. Blessings, Marla Hi Everyone! I am also still here, but have been reading but not posting. My situation is similar to everyone else's- I have good and bad days. I am currently back on Cellcept for my sarc. I just restarted it after 6 months using methotrexate/plaquenil/prednisone. That combination was working, but it was beating up my liver so I had to switch. I've seen several neurologists, and noboby can seem to agree about what's going on with me. I have brain/spine mri's and ct scans at least every 3-6 months. Sarc is so frustrating!!! Ugh.... Wishing you all pain free, happy days... Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2010 Report Share Posted September 22, 2010 Hello everyone. It has been a long time since I posted. I read all the digest and tried to reply but I don't think it went in. I have had sarcoidosis since 2001. It started as neuro but is now in my eyes and bones. I am on methotrexate/plaquenil/decadron. Seems to be holding it at bay somewhat. My ACE level stays elevated, but no visible granulomas on MRI. I am able to work part time. I am thankful for that. You are a great group. Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 No..but I used to post quite regularly way back when Aisha was moderator. I remember you very well. You are still such a positive force!! Still following the list. Since I have gotten back to work and out of the wheelchair, I don't have much time to post. Praise the Lord for good doctors!!! Becky Whitaker from Alabama > > > Are you " THE " Becky that comes to the Indy sarc retreat? I'm not very good at last names. If you aren't " THAT " Becky, then you are definitely " ANOTHER " Becky, just as wonderful! > > > Ramblin' Rose > Moderator > > A merry heart is good medicine. Proverbs 17:22 > > > > > > > > > To: Neurosarcoidosis > > From: whitaker275@... > > Date: Wed, 22 Sep 2010 18:27:59 +0000 > > Subject: Roll Call > > > > Hello everyone. It has been a long time since I posted. I read all the digest and tried to reply but I don't think it went in. > > > > I have had sarcoidosis since 2001. It started as neuro but is now in my eyes and bones. I am on methotrexate/plaquenil/decadron. Seems to be holding it at bay somewhat. My ACE level stays elevated, but no visible granulomas on MRI. > > > > I am able to work part time. I am thankful for that. > > > > You are a great group. > > > > Becky > > > > > > > > ------------------------------------ > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > > > > > Message Archives:- > > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > > > Members Database:- > > Listings of locations, phone numbers, and instant messengers. > > http://groups.yahoo.com/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2010 Report Share Posted September 23, 2010 Hi Becky, Welcome, I'm sorry you have to deal with NeuroSarc, I have it, and am no longer to keep down a regular job, left nursing 7 year ago, tired teaching, but couldn't stand for 3 hours for lecture, and the fatigue was overwhelming, my problem is I can't walk well or far, so that keeps nursing out the window, in fact I never know if I am going to have a good day or a bad day, so hard to commit to something. Hope we can help. hang in there. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Hello everyone. It has been a long time since I posted. I read all the digest and tried to reply but I don't think it went in. I have had sarcoidosis since 2001. It started as neuro but is now in my eyes and bones. I am on methotrexate/plaquenil/decadron. Seems to be holding it at bay somewhat. My ACE level stays elevated, but no visible granulomas on MRI. I am able to work part time. I am thankful for that. You are a great group. Becky Quote Link to comment Share on other sites More sharing options...
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