Guest guest Posted June 24, 2008 Report Share Posted June 24, 2008 I just started Remicade, only 1 infusion so far, tomorrow is my second one, and even with only 1 dose, I saw big changes, I have been a brain fog forever, and about 3 days after the infusion I had what I call someone switched the light on, it was amazing, I had more energy, I was tired the first couple days after treatment. I had been walking with a cane, and I felt my balance was even better and was able to walk without the cane, although slow, I still have limitations on walking and moving, but am hopeful that with more infusions that will go away, I notice the past couple days a little more tired, and yesterday I started tripping again, almost went down once but my daughter grabbed my arm, and said want me to get your cane. So am looking forward to my second infusion! I am so glad it worked so well for you, There are others that it has worked well for, and some who couldn't take it! Thanks for sharing your story with us, we like hearing happy stories, gives us all more hope. Blessings, Marla has anyone use remicade for their neurosarcoidosis? it has work wonders for me, and it even cleared up the legions around my eyes and mouth. it also help my aching joint pains. it had been on the treatment for over six month. Neurologist has seen great improvement in my ct scans/Mri. They are also still amazed how well the treatment has work. -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hi All, I haven't been around in quite awhile...my numbness and tingling worsens the more I type. I have a question for ya. I have been approved for Remicade infusions, and I am just wondering what to expect. The gal at the infusion center told me she wasn't sure if my doc had ordered 800mg or 300mg for my first dose. She told me to make sure I was well-hydrated when I come in and that it will take about 3hrs to administer no matter what the dosage is. I am still on Prednisone 40mg one day and 20mg the next until August 15th and then I am to drop down to 20mg every day. The last time I saw my neurologist he looked me up and down and said " We've got to get you off the Prednisone " . I have gained about 70 pounds in a year and a half (and I wasn't petite to begin with). I am borderline Diabetic, the pressure in my eyes keeps building up, and so on due to the prednisone. Anyway, my first infusion is this Friday, and I am just wondering what some of the benefits and side effects are or can be. Some of my symptoms are numbness and tingling from my shoulders to my toes, instability (with walking...okay and sometimes my brain...LOL), tremors, bobblehead, knee joint pain, sharp pains in my side and stomach, earaches, headaches and of course, extreme fatigue. I have been restricted from driving for a year and a half now, but read on one of the Remicade studies where a woman was able to start driving after several months of infusions. Is it wrong for me to get my hopes up that I might one day be able to do a little bit of " in- town " driving sometime in the near future? Please let me know what your experiences have been with Remicade and specifically how it has helped you. Thanks everyone! in UT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hi , I just finished my " start up " dosing of Remicade, and I noticed a difference right away after the first dose, I had trouble walking due to balance and lifting my legs and walked with a cane, I no longer use a cane, what I will call " Brain Fog " has cleared up too, It felt like someone just flipped on the light in my head. I think you should always be hopeful for the future, I would think it could be possible that you just might drive one day again. However, Remicade effects everyone different, some are not able to take it, I hope that is not you. I'm not sure of my dose, I remember the doctor said we would start low so we have room to go up if needed. It took me about 2 hours, and I was done, you need to be well hydrated for a couple reasons, first it's an IV and they are so much easier to start if you veins are full, thus the fluid, and the body just handles things better when well hydrated, and you feel better if you keep yourself always well hydrated. So if it's OK for you, I would like to say a prayer that all goes well, and you have the wonderful results many of us have enjoyed. If you have more questions just ask away! hugs, Marla Hi All, I haven't been around in quite awhile...my numbness and tingling worsens the more I type. I have a question for ya. I have been approved for Remicade infusions, and I am just wondering what to expect. The gal at the infusion center told me she wasn't sure if my doc had ordered 800mg or 300mg for my first dose. She told me to make sure I was well-hydrated when I come in and that it will take about 3hrs to administer no matter what the dosage is. I am still on Prednisone 40mg one day and 20mg the next until August 15th and then I am to drop down to 20mg every day. The last time I saw my neurologist he looked me up and down and said " We've got to get you off the Prednisone " . I have gained about 70 pounds in a year and a half (and I wasn't petite to begin with). I am borderline Diabetic, the pressure in my eyes keeps building up, and so on due to the prednisone. Anyway, my first infusion is this Friday, and I am just wondering what some of the benefits and side effects are or can be. Some of my symptoms are numbness and tingling from my shoulders to my toes, instability (with walking...okay and sometimes my brain...LOL), tremors, bobblehead, knee joint pain, sharp pains in my side and stomach, earaches, headaches and of course, extreme fatigue. I have been restricted from driving for a year and a half now, but read on one of the Remicade studies where a woman was able to start driving after several months of infusions. Is it wrong for me to get my hopes up that I might one day be able to do a little bit of " in- town " driving sometime in the near future? Please let me know what your experiences have been with Remicade and specifically how it has helped you. Thanks everyone! in UT -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 this is all very good info from both of you ladies about Remicade.i'm the new person in this group and my sarcoidosis has gone untreated now for almost two years. now it is at the point where i will have to put on something but they don't know what because i also have ITP an antiinflammatory bleeding disease. so the two are against each other. i go to Ann Arbor to see a specialist on August 20 and i'm hoping to be put on something for the sarcoidosis. i've been so sick from it the last few weeks. I'm hoping they will do Remicade. so the more i know about the better. Hi All,I haven't been around in quite awhile...my numbness and tingling worsens the more I type. I have a question for ya. I have been approved for Remicade infusions, and I am just wondering what to expect. The gal at the infusion center told me she wasn't sure if my doc had ordered 800mg or 300mg for my first dose. She told me to make sure I was well-hydrated when I come in and that it will take about 3hrs to administer no matter what the dosage is. I am still on Prednisone 40mg one day and 20mg the next until August 15th and then I am to drop down to 20mg every day. The last time I saw my neurologist he looked me up and down and said "We've got to get you off the Prednisone". I have gained about 70 pounds in a year and a half (and I wasn't petite to begin with). I am borderline Diabetic, the pressure in my eyes keeps building up, and so on due to the prednisone.Anyway, my first infusion is this Friday, and I am just wondering what some of the benefits and side effects are or can be. Some of my symptoms are numbness and tingling from my shoulders to my toes, instability (with walking...okay and sometimes my brain...LOL) , tremors, bobblehead, knee joint pain, sharp pains in my side and stomach, earaches, headaches and of course, extreme fatigue.I have been restricted from driving for a year and a half now, but read on one of the Remicade studies where a woman was able to start driving after several months of infusions. Is it wrong for me to get my hopes up that I might one day be able to do a little bit of "in-town" driving sometime in the near future?Please let me know what your experiences have been with Remicade and specifically how it has helped you.Thanks everyone! in UT-- Marla Bramer Independent Beauty Consultant Kaymbramer (AT) marykay (DOT) com www.marykay. com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 hi tracy i'm new to the group. i have had sarcoidosis for about two years and have gone untreated until now. i'm hoping they will decide on a treatment after i see the specialist. i will say prayers that your treatment of Remicade goes better and is more tolerable. Subject: RemicadeTo: Neurosarcoidosis Date: Thursday, July 31, 2008, 6:44 AM Hi All,I haven't been around in quite awhile...my numbness and tingling worsens the more I type. I have a question for ya. I have been approved for Remicade infusions, and I am just wondering what to expect. The gal at the infusion center told me she wasn't sure if my doc had ordered 800mg or 300mg for my first dose. She told me to make sure I was well-hydrated when I come in and that it will take about 3hrs to administer no matter what the dosage is. I am still on Prednisone 40mg one day and 20mg the next until August 15th and then I am to drop down to 20mg every day. The last time I saw my neurologist he looked me up and down and said "We've got to get you off the Prednisone". I have gained about 70 pounds in a year and a half (and I wasn't petite to begin with). I am borderline Diabetic, the pressure in my eyes keeps building up, and so on due to the prednisone.Anyway, my first infusion is this Friday, and I am just wondering what some of the benefits and side effects are or can be. Some of my symptoms are numbness and tingling from my shoulders to my toes, instability (with walking...okay and sometimes my brain...LOL) , tremors, bobblehead, knee joint pain, sharp pains in my side and stomach, earaches, headaches and of course, extreme fatigue.I have been restricted from driving for a year and a half now, but read on one of the Remicade studies where a woman was able to start driving after several months of infusions. Is it wrong for me to get my hopes up that I might one day be able to do a little bit of "in-town" driving sometime in the near future?Please let me know what your experiences have been with Remicade and specifically how it has helped you.Thanks everyone! in UT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Hi Utah , You will want to have someone take you for the first infusion-- and that way if you do have any problem (and I doubt there will be) you would have someone to take you home. I've been on Remicade for several years now, and it has been great for me. I get a false sense of energy immediately following my infusions-- and after a trip to the grocery store wiped me out-- I realized that I would need to plan to go straight home after an infusion. I end up sleeping for the better majority of a day or two (longer the longer I am on the medication-- but it's worth it to feel so much better.) As far as side effects, I really haven't had anything- maybe a bit of a headache, but that's about it. It helps to have something on your stomach when you get your infusion-- so eat a decent breakfast or lunch-- and do make sure you get plenty of fluids down, so that it's easy to start the iv. You'll want to make sure that you get plenty of fluids in the days following also, so that your liver doesn't become toxic. I swear by Milk Thistle capsules also-- even with all the immunosuppressants I'm on-- Methotrexate, Plaquenil and Remicade-- my liver is fine. In fact, it's better now with the Remicade than it was prior to the Remicade. You should be on Folic Acid with the Remicade-- it helps to keep you from developing anemia. I hope that as they wean you off the pred, that they add Methotrexate to your Remicade-- so that you don't develop any antibodies against the Remicade. For the time being, the pred will do keep that from happening. I'm sure that they'll start you at a 300mg dose initially (3mg/kg) and then 2wks later, the 2nd infusion, and 4wks after that the next, and from there they will increase the dose, or shorten the intervals between infusions as you find necessary. Keep track of how long you feel better with the infusion, and whether it holds you over until the next infusion. I get a 10mg/kg dose every 28 days-- and it lasts for 24 days. Then I have a problem with rebound inflammation for the last 4 days-- but I can live with that. You'll want to use the lowest dose that works, so if 3mg/kg works-- great. If you don't see improvement, then tell the doc, and he can increase it to 5mg/kg. If you have it last only 5 wks instead of 6wk intervals-- tell the doc, that way he can order your infusion time to be at 5 wk intervals. You asked if you could look forward to being able to drive again. I tell ya, prior to the Remicade, I had given up driving any distance at all-- just didn't have the energy. I now make trips to and Sacramento-- and I do take someone with me-- but yeah, I can drive again. It's very possible that you will regain some lost functions-- so keep the faith. Hope this helps, Tracie NS Co-owner/moderator RemicadeTo: Neurosarcoidosis@ yahoogroups. comDate: Thursday, July 31, 2008, 6:44 AM Hi All,I haven't been around in quite awhile...my numbness and tingling worsens the more I type. I have a question for ya. I have been approved for Remicade infusions, and I am just wondering what to expect. The gal at the infusion center told me she wasn't sure if my doc had ordered 800mg or 300mg for my first dose. She told me to make sure I was well-hydrated when I come in and that it will take about 3hrs to administer no matter what the dosage is. I am still on Prednisone 40mg one day and 20mg the next until August 15th and then I am to drop down to 20mg every day. The last time I saw my neurologist he looked me up and down and said "We've got to get you off the Prednisone". I have gained about 70 pounds in a year and a half (and I wasn't petite to begin with). I am borderline Diabetic, the pressure in my eyes keeps building up, and so on due to the prednisone.Anyway, my first infusion is this Friday, and I am just wondering what some of the benefits and side effects are or can be. Some of my symptoms are numbness and tingling from my shoulders to my toes, instability (with walking...okay and sometimes my brain...LOL) , tremors, bobblehead, knee joint pain, sharp pains in my side and stomach, earaches, headaches and of course, extreme fatigue.I have been restricted from driving for a year and a half now, but read on one of the Remicade studies where a woman was able to start driving after several months of infusions. Is it wrong for me to get my hopes up that I might one day be able to do a little bit of "in-town" driving sometime in the near future?Please let me know what your experiences have been with Remicade and specifically how it has helped you.Thanks everyone! in UT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2008 Report Share Posted July 31, 2008 Thanks to all who responded to my message. I knew I would get the info needed from you guys. You're all GREAT!!! in UT > > From: bbwtabbie (AT) yahoo (DOT) com>> Subject: Remicade> To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, July 31, 2008, 6:44 AM> > > Hi All,> > I haven't been around in quite awhile...my numbness and tingling > worsens the more I type. I have a question for ya. I have been > approved for Remicade infusions, and I am just wondering what to > expect. The gal at the infusion center told me she wasn't sure if my > doc had ordered 800mg or 300mg for my first dose. She told me to > make sure I was well-hydrated when I come in and that it will take > about 3hrs to administer no matter what the dosage is. I am still on > Prednisone 40mg one day and 20mg the next until August 15th and then > I am to drop down to 20mg every day. The last time I saw my > neurologist he looked me up and down and said "We've got to get you > off the Prednisone". I have gained about 70 pounds in a year and a > half (and I wasn't petite to begin with). I am borderline Diabetic, > the pressure in my eyes keeps building up, and so on due to the > prednisone.> > Anyway, my first infusion is this Friday, and I am just wondering > what some of the benefits and side effects are or can be. Some of my > symptoms are numbness and tingling from my shoulders to my toes, > instability (with walking...okay and sometimes my brain...LOL) , > tremors, bobblehead, knee joint pain, sharp pains in my side and > stomach, earaches, headaches > and of course, extreme fatigue.> > I have been restricted from driving for a year and a half now, but > read on one of the Remicade studies where a woman was able to start > driving after several months of infusions. Is it wrong for me to get > my hopes up that I might one day be able to do a little bit of "in-> town" driving sometime in the near future?> > Please let me know what your experiences have been with Remicade and > specifically how it has helped you.> > Thanks everyone!> in UT> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Hi For the tremors and "Bobblehead" which I also have, suggest to your neuro or dr about primidone. I take it now and it does help. Good luck.....especially with the Remicade Debbie T. Co-Moderator Subject: Re: RemicadeTo: Neurosarcoidosis Date: Thursday, July 31, 2008, 10:04 PM Thanks to all who responded to my message. I knew I would get the info needed from you guys. You're all GREAT!!! in UT > > From: bbwtabbie (AT) yahoo (DOT) com>> Subject: Remicade> To: Neurosarcoidosis@ yahoogroups. com> Date: Thursday, July 31, 2008, 6:44 AM> > > Hi All,> > I haven't been around in quite awhile...my numbness and tingling > worsens the more I type. I have a question for ya. I have been > approved for Remicade infusions, and I am just wondering what to > expect. The gal at the infusion center told me she wasn't sure if my > doc had ordered 800mg or 300mg for my first dose. She told me to > make sure I was well-hydrated when I come in and that it will take > about 3hrs to administer no matter what the dosage is. I am still on > Prednisone 40mg one day and 20mg the next until August 15th and then > I am to drop down to 20mg every day. The last time I saw my > neurologist he looked me up and down and said "We've got to get you > off the Prednisone". I have gained about 70 pounds in a year and a > half (and I wasn't petite to begin with). I am borderline Diabetic, > the pressure in my eyes keeps building up, and so on due to the > prednisone.> > Anyway, my first infusion is this Friday, and I am just wondering > what some of the benefits and side effects are or can be. Some of my > symptoms are numbness and tingling from my shoulders to my toes, > instability (with walking...okay and sometimes my brain...LOL) , > tremors, bobblehead, knee joint pain, sharp pains in my side and > stomach, earaches, headaches > and of course, extreme fatigue.> > I have been restricted from driving for a year and a half now, but > read on one of the Remicade studies where a woman was able to start > driving after several months of infusions. Is it wrong for me to get > my hopes up that I might one day be able to do a little bit of "in-> town" driving sometime in the near future?> > Please let me know what your experiences have been with Remicade and > specifically how it has helped you.> > Thanks everyone!> in UT> Quote Link to comment Share on other sites More sharing options...
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