Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids. Tony, As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis. I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also? At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet. I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused. I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease. With compassion, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 i HAVE A QUESTION FOR ALL OF YOU, i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS THIS A NORMAL SIDE EFFECT OR IS IT IN MY HEAD, I GO OFF ON THESE TANGENTS ( MY POOR KIDS). mY EYE SIGHT HAS RESOLVED BUT MY HEAD ACHS ARE HORRIBLE AND THE ARM PAIN HAS SUBSIDDED BUT I AM NOT ME BY FAR. i just feel out of control. tonytiodaat@... wrote: my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids.Tony,As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis.I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also?At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet.I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused.I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease.With compassion,TracieNS Co-owner/moderator Yahoo! Mail Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Hi Tony, first of all welcome to the group. I don't think I've told you that yet. But to answer your question. Prednisone, makes most if not all of us do things we'd never thought we'd do, we have horrid mood swings. Some people have hallucinations (sp) . Its a drug that I myself refuse to take as I have a huge weight gain, edema in my lower extremities, and bad mood swings. I agree, my poor son! I'm so glad he still loves me. Anyway, just know that it is the pred. Hugz, t -- Re: Sarc trts i HAVE A QUESTION FOR ALL OF YOU, i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS THIS A NORMAL SIDE EFFECT OR IS IT IN MY HEAD, I GO OFF ON THESE TANGENTS ( MY POOR KIDS). mY EYE SIGHT HAS RESOLVED BUT MY HEAD ACHS ARE HORRIBLE AND THE ARM PAIN HAS SUBSIDDED BUT I AM NOT ME BY FAR. i just feel out of control. tonytiodaat@... wrote: my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids.Tony,As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis.I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also?At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet.I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused.I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease.With compassion,TracieNS Co-owner/moderator Yahoo! MailUse Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Hi Tony, When I am on Prednisone, my husband calls me "Sybil", (remember the book with the girl with multiple personalities?) One minute I could be screaming, then I could be crying, then I could be laughing, etc. He just walks on eggshells all around me. I get very moody. Debbie wrote: Hi Tony, first of all welcome to the group. I don't think I've told you that yet. But to answer your question. Prednisone, makes most if not all of us do things we'd never thought we'd do, we have horrid mood swings. Some people have hallucinations (sp) . Its a drug that I myself refuse to take as I have a huge weight gain, edema in my lower extremities, and bad mood swings. I agree, my poor son! I'm so glad he still loves me. Anyway, just know that it is the pred. Hugz, t -- Re: Sarc trts i HAVE A QUESTION FOR ALL OF YOU, i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS THIS A NORMAL SIDE EFFECT OR IS IT IN MY HEAD, I GO OFF ON THESE TANGENTS ( MY POOR KIDS). mY EYE SIGHT HAS RESOLVED BUT MY HEAD ACHS ARE HORRIBLE AND THE ARM PAIN HAS SUBSIDDED BUT I AM NOT ME BY FAR. i just feel out of control. tonytiodaat@... wrote: In a message dated 2/11/06 8:14:34 AM Pacific Standard Time, aduquette1@... writes: my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids.Tony,As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis.I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also?At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet.I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused.I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease.With compassion,TracieNS Co-owner/moderator Yahoo! MailUse Photomail to share photos without annoying attachments. Brings words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Oh I believe it was that Solumedrol. When I had it for 3 days in-home infusion I was a bitch on wheels! LOL Thankfully they haven't given me that again. I didn't eat & only slept a total of 8 hours for the whole 3 days. That was before they said it was sarc & thought it was possible MS or at least that's the way I remember it. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Oh I believe it was that Solumedrol. When I had it for 3 days in-home infusion I was a bitch on wheels! LOL Thankfully they haven't given me that again. I didn't eat & only slept a total of 8 hours for the whole 3 days. That was before they said it was sarc & thought it was possible MS or at least that's the way I remember it. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Oh I believe it was that Solumedrol. When I had it for 3 days in-home infusion I was a bitch on wheels! LOL Thankfully they haven't given me that again. I didn't eat & only slept a total of 8 hours for the whole 3 days. That was before they said it was sarc & thought it was possible MS or at least that's the way I remember it. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Now that I'm just on the pred I am more financially careless than ever. I can't even behave myself at the grocery store let alone any other store. Some really strange things come along with these meds. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Now that I'm just on the pred I am more financially careless than ever. I can't even behave myself at the grocery store let alone any other store. Some really strange things come along with these meds. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 Now that I'm just on the pred I am more financially careless than ever. I can't even behave myself at the grocery store let alone any other store. Some really strange things come along with these meds. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 PS I have to add that I couldn't say about how I am now on just pred because I sleep all day & stay up all night most of the time, don't work any longer & live alone so I might still be mood swingy or sharp tempered. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 PS I have to add that I couldn't say about how I am now on just pred because I sleep all day & stay up all night most of the time, don't work any longer & live alone so I might still be mood swingy or sharp tempered. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2006 Report Share Posted February 12, 2006 PS I have to add that I couldn't say about how I am now on just pred because I sleep all day & stay up all night most of the time, don't work any longer & live alone so I might still be mood swingy or sharp tempered. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 dont know how much longer i will be able to work if this gets any worse, now the are talking that i have both neurosarcoid amd ms, WHAT ARE THE ODDS IN THAT. TONY wrote: PS I have to add that I couldn't say about howI am now on just pred because I sleep all day & stayup all night most of the time, don't work any longer & live alone so I might still be mood swingy or sharp tempered.grannylunatic@...__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Tony I'm not sure about the odds but it sure sucks. Sarc is bad enough by itself. My hydrocephaelus is supposed to be a result of the sarc, or so they tell me. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Tony I'm not sure about the odds but it sure sucks. Sarc is bad enough by itself. My hydrocephaelus is supposed to be a result of the sarc, or so they tell me. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Tony, That is why so many of us swear we will never go on steroids again, they do crazy things, like you described to us. The first time my doctor put me on Pred. he told me to call him if I started to feel out of control, depressed, etc.. at the time he was my neighbor too, so I asked him if it would make me psycho and want to like kill my neighbors or something:), he got a laugh out of it, and then said, for sure call me. So yes, especially if you come off too fast, I would become very irritable! Hang in, and give your doctor a call! Marla i HAVE A QUESTION FOR ALL OF YOU, i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS THIS A NORMAL SIDE EFFECT OR IS IT IN MY HEAD, I GO OFF ON THESE TANGENTS ( MY POOR KIDS). mY EYE SIGHT HAS RESOLVED BUT MY HEAD ACHS ARE HORRIBLE AND THE ARM PAIN HAS SUBSIDDED BUT I AM NOT ME BY FAR. i just feel out of control. tony tiodaat@... wrote: In a message dated 2/11/06 8:14:34 AM Pacific Standard Time, aduquette1@... writes: my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids. Tony, As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis. I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also? At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet. I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused. I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease. With compassion, Tracie NS Co-owner/moderator Yahoo! Mail Use Photomail to share photos without annoying attachments. -- The Lord bless you and keep you: The Lord make his face to shine upon you, and be gracious to you: The Lord lift up his countenance upon you and give you peace. Numbers 6:24-26 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Tony, That is why so many of us swear we will never go on steroids again, they do crazy things, like you described to us. The first time my doctor put me on Pred. he told me to call him if I started to feel out of control, depressed, etc.. at the time he was my neighbor too, so I asked him if it would make me psycho and want to like kill my neighbors or something:), he got a laugh out of it, and then said, for sure call me. So yes, especially if you come off too fast, I would become very irritable! Hang in, and give your doctor a call! Marla i HAVE A QUESTION FOR ALL OF YOU, i RECENTLY CAME OFF SOLUMEDROL AND AM NOW ON PREDNASONE AND BOY HAVE I BECOME THE BIGGEST ASS HOLE, IS THIS A NORMAL SIDE EFFECT OR IS IT IN MY HEAD, I GO OFF ON THESE TANGENTS ( MY POOR KIDS). mY EYE SIGHT HAS RESOLVED BUT MY HEAD ACHS ARE HORRIBLE AND THE ARM PAIN HAS SUBSIDDED BUT I AM NOT ME BY FAR. i just feel out of control. tony tiodaat@... wrote: In a message dated 2/11/06 8:14:34 AM Pacific Standard Time, aduquette1@... writes: my doc is a nuroligest and i am only his 2nd person with neurosarcoidosis but seems on top of things but the only treatment he is doing is IV stearoids. Tony, As you've noticed by now- we're all on different combonation of medication. Once sarc has gone systemic and neuro--you need something other than the steroids. Pred is great for pulm sarc. If that's all you have. Add one more system, and it (sarc) needs aggressive immunosupressive treatment. The weight loss, memory and body pain is all secondary to your advanced sarcoidosis. The fevers are sarcoidosis inflammation. The headaches and shortness of breath are sarcoidosis. I suspect that the headaches are as much from a lack of oxygen--(the scarring in your lungs from the sarc is making it so that you can't get the air across the membranes so it can get into the red blood cells and out to your body.) Do you have sleep apnea also? At night when we sleep it's normal for our oxygen levels to drop, so if your diffusion capacity is already compromised then you would need supplemental O2 at night. That too would help with the numbness of your hands and feet. I gave you the website of WWW.ARTHRITIS.ORG and in the Jan/Feb issue they always release a drug sheet with the newest anti-inflammatories, DMARDs, BRMS--that is used to treat inflamation diseases. I'm on Plaquenil, Methotrexate and Remicade. I also take Motrin 800mg 3x day, Flexeril, blood pressure and thyroid meds, Folic Acid (a must with any of these drugs-- they all suck the B vitamins from our bodies) Neurontin, Effexor XR and Glucophage. The first 3 are immunosuppressants, the Flexeril is muscle relaxant, Neurotin is for nerve pain, and Effexor XR is for depression and pain control. (If you're not sleeping well, it will screw up your seratonin and Norephinephrine levels and cause increased pain and depression). Glucophage is for the diabetes that the prednisone caused. I hope this helps--do check out the LINKS and read the articles and sites--along with our ARCHIVES. We've shared so much info, and it is still very good info on treatment for this disease. With compassion, Tracie NS Co-owner/moderator Yahoo! Mail Use Photomail to share photos without annoying attachments. -- The Lord bless you and keep you: The Lord make his face to shine upon you, and be gracious to you: The Lord lift up his countenance upon you and give you peace. Numbers 6:24-26 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
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