Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Kieth, I've been on Remicade for over 2 years, and this is what I found to be true, I too get a burst of energy right after my infusion, if I use it, run around do errands, clean etc. it catches up with me and I am fatigue for awhile, however, if I can home and rest for a day or two, I will have energy later and longer lasting, it's hard to give up that burst of energy, but worth it, you still need to pace yourself. I just received my first stronger does, I have been on 400mgs, and this last week I received 600mgs, and felt tired most that day, then got some energy, but decided to lay low, It's really hard on my lower GI system, more then usual, but I figured this is just the first time, and I will get use to it, my side effects are nothing to the gain I get from the Remicade. I was starting to have more trouble again walking, and getting the shakes, in fact I felt like I was having like a strange inside seizure, but you couldn't see it, I even had what I thought was a dream that I was in an earth quake, but when I woke up, I was the only thing shaking, only inside. Sorry probably more info then you wanted, anyway I went out and did some walking, and it was better, so I am hopefully, hang in there it may take some time, my doctor told me sometimes up to 3 or4 infusions, don't give up to soon. OK that's enough from me. Good luck to you. 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:) Last Wednesday saw my third and, possibly last, infuson of Infliximab (Remicade) for this series. There was some delay in getting started, for some reason or other, so I didn't get home until around 11:30 at night and even then did not wait the full four hours after the end of the infusion for fear of missing the last train home. Next morning, I felt good, full of energy and spent some time working in the garden, the snow and ice having at last cleared. Friday was also pretty good and so I managed to get some house painting done inside, along with some other tasks. We were up late, being New Year's Eve, with some friends and didn't get home until the early hours. Yesterday, I felt absolutely exhausted, as I do again today. It seems that the Remicade gave a boost of energy that has just stopped in its tracks. Does this seem normal or is it just a matter of overdoing things a bit? The other thing that concerns me is that the Remicade doesn't seem to have addressed the original problems, so it will be interesting to see what the results of the next set of tests are. If the blood ACE level has not dropped, this could mean that I am refactory to Remicade - so where next will be the question.... Overall, I don't see any improvement in the way I feel, which is not so clever. One day at a time! Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2011 Report Share Posted January 4, 2011 Hi Rose, Unfortunately, the visit to the hosopital wasn't as productive as could have been hoped, probably because my normal neuro wasn't there and it was between Christmas and New Year. This is always a strange time in the UK, with some services and shops and so forth running and some not. Generally, people take the time between the two as leave, so it's catch as catch can. I have written to the neuro to arange for a review at his office and am waiting for his response. It won't be for a week or two, as I guess I will have to have the ACE test, which takes a while to run. Watch this space, as they say! God bless, On Mon, 3 Jan 2011 22:06:38 -0500, Rose wrote: > , I'm sorry that you aren't seeing an improvement in your > symptoms. Have your docs discussed increasing the dosage of Remicade? > > _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: keith@... >> Date: Sun, 2 Jan 2011 07:56:01 +0000 >> Subject: Third Infusion >> >> Last Wednesday saw my third and, possibly last, infuson of > Infliximab (Remicade) for this series. There was some delay in getting > started, for some reason or other, so I didn't get home until around > 11:30 at night and even then did not wait the full four hours after > the end of the infusion for fear of missing the last train home. Next > morning, I felt good, full of energy and spent some time working in > the garden, the snow and ice having at last cleared. Friday was also > pretty good and so I managed to get some house painting done inside, > along with some other tasks. We were up late, being New Year's Eve, > with some friends and didn't get home until the early hours. > Yesterday, I felt absolutely exhausted, as I do again today. It seems > that the Remicade gave a boost of energy that has just st! opped in > its tracks. Does this seem normal or is it just a matter of overdoing > things a bit? The other thing that concerns me is that the Remicade > doesn't seem to have addressed the original problems, so it will be > interesting to see what the results of the next set of tests are. If > the blood ACE level has not dropped, this could mean that I am > refactory to Remicade - so where next will be the question.... > Overall, I don't see any improvement in the way I feel, which is not > so clever. >> >> One day at a time! >> >> Best regards, >> >> >> >> >> ------------------------------------ >> >> ~~~~ *** ~~~ *** ~~~ *** ~~~~ >> 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/gro! up/Neurosarcoidosis/database >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 , don't hesitate to ask what dosage you are getting--so much per kg. In the U.S. patients have that right & I assume that's also true in the UK. I hope so. Re: Third Infusion Hi Marla, Many thanks. It's good to know that it is a normal reaction. I guess it was also amplified by a very late New Year's Eve, so I should have expected it. I have no intention of giving up the Remicade yet. There needs to be the discussion with the neuro (see my recent to Rose), based on test results, to see if anything positive is happening. I have no idea how much I am being given, as they take my weight and apply accordingly. God bless, On Sun, 2 Jan 2011 23:17:28 -0700, Marla Bramer wrote: > Kieth, > I've been on Remicade for over 2 years, and this is what I found to be > true, I too get a burst of energy right after my infusion, if I use > it, run around do errands, clean etc. it catches up with me and I am > fatigue for awhile, however, if I can home and rest for a day or > two, I will have energy later and longer lasting, it's hard to give up > that burst of energy, but worth it, you still need to pace yourself. > I just received my first stronger does, I ha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 Yeah, , keep us updated. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: keith@...Date: Thu, 6 Jan 2011 06:10:14 +0000Subject: Re: Third Infusion Hi Rose,Thanks for the advice. It's one among a whole bunch of questions I need to ask. Somehow, I feel this is the time to review just exactly what the score is.God bless,Sent from my HTC----- Reply message -----To: "keith@..." , "Neurosarcoidosis " <Neurosarcoidosis >Subject: Third InfusionDate: Wed, Jan 5, 2011 23:05, don't hesitate to ask what dosage you are getting--so much per kg. In the U.S. patients have that right & I assume that's also true in the UK. I hope so. Re: Third InfusionHi Marla,Many thanks. It's good to know that it is a normal reaction. I guessit was also amplified by a very late New Year's Eve, so I should haveexpected it. I have no intention of giving up the Remicade yet. Thereneeds to be the discussion with the neuro (see my recent to Rose), basedon test results, to see if anything positive is happening. I have noidea how much I am being given, as they take my weight and applyaccordingly.God bless,On Sun, 2 Jan 2011 23:17:28 -0700, Marla Bramer wrote:> Kieth, > I've been on Remicade for over 2 years, and this is what I found to be> true, I too get a burst of energy right after my infusion, if I use> it, run around do errands, clean etc. it catches up with me and I am> fatigue for awhile, however, if I can home and rest for a day or> two, I will have energy later and longer lasting, it's hard to give up> that burst of energy, but worth it, you still need to pace yourself.> I just received my first stronger does, I ha------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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...
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