Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 good luck with remicade!!! i had a couple good rides with it but then i broke out in hives. made me feel great though. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 no i've never tried those shoes. i kept the reeboks and the other pair too. i took out the insoles and the cheap ones were glued in. guess they are mine now too!! kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Carol, that sounds like great news, hope it works well for you. You go girl. Keep us informed on your progress. in WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Thanks Kathy. I'm so excited, but still afraid something will go wrong (like they won't accept me for some reason). I won't believe it until I go in for my first infusion. I've been feeling pretty hopeless lately. This disease has begun to take over my life. The possibility of better days ahead is so encouraging. How are you doing? You were talking about shoes, and I wanted to ask if you 've ever tried Birkenstocks. They're kind of ugly looking, but they are the most comfortable shoes I've ever worn. They are contoured to your foot, and it's like walking with a suspension system in your shoe. They're expensive, but I've purchased them for $15 at the outlet store here. Just a thought. Hugs, Carol Re: [ ] I'm so excited! good luck with remicade!!! i had a couple good rides with it but then i broke out in hives. made me feel great though. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Congratulations Carol!!! I¹m really happy for you. I hope your WBC¹s allow you to start right away. Just remember that less than 1% of patients have serious side effects. There is a good list of them at : http://www.ebiocare.com/infocenter/consumer/medlib/remicade.html I haven¹t been on it so I can¹t give you any words of wisdom from experience, but we have many members that have tried it. Good luck! Hugs, a > Hi Everyone. I just called this clinical trial in Gainesville, and it's for > Remicade. It's a year long study to see if using Remicade will enable > patients to decrease their Methotrexate. They preliminarily screened me, > and said I qualify. I'm going there tomorrow to have the TB test and the > labs done and she said if everything goes well I could get my first infusion > as early as next week! > > I've been having such a hard time, and have been so discouraged. In this > trial there is no placebo, so that's a big plus. She said they also do the > bone density testing at the beginning and end of the trial---another bonus. > I just hope my white blood count is high enough by tomorrow. She said if it > isn't, they can try again in 30 days. > > Are there any things I should know about remicade before I sign on the > " dotted line " ? > > Hope you are all having a great day, too! > > Hugs, > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Carol: I have heard very, very positive things from people who have been on Remicade. A friend of mine, his mother has severe RA, she was in a wheelchair most of the time and was not able to do much of anything, but since beginning Remicade she has gotten her life back. It's amazing - she even took a trip back to Iran to visit family - something she had not been able to do in years. I have talked with my doctor about Remicade but I'm doing well on my present meds and am waiting for the elusive Embrel. I wish you the best with this medication and hope that it works as well for you as it has for her! Good luck and let us know how you do. Kathe in CA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Dear Carol...I am so glad this is happening for you! I haven't had any adverse reactions from Remicade...sometimes I'm a little " extra " tired for a few hours after an infusion, so I'd suggest not plannng anything much right after the infusions until you get to see how you respond. I truly hope this works out great for you. Hugs of Hope... Tess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Very good news, Carol! I hope you get into the study and that Remicade helps you. [ ] I'm so excited! > Hi Everyone. I just called this clinical trial in Gainesville, and it's for > Remicade. It's a year long study to see if using Remicade will enable > patients to decrease their Methotrexate. They preliminarily screened me, > and said I qualify. I'm going there tomorrow to have the TB test and the > labs done and she said if everything goes well I could get my first infusion > as early as next week! > > I've been having such a hard time, and have been so discouraged. In this > trial there is no placebo, so that's a big plus. She said they also do the > bone density testing at the beginning and end of the trial---another bonus. > I just hope my white blood count is high enough by tomorrow. She said if it > isn't, they can try again in 30 days. > > Are there any things I should know about remicade before I sign on the > " dotted line " ? > > Hope you are all having a great day, too! > > Hugs, > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Carol, I am ina remicade study too since May....I have a 33%chance of placebo or 3%solution or 10%solution from day one. I have had 3 infusions already and I think I am getting the 3%because I dont see any real changes yet. My next infusion in Sept I will be getting the real thing at for sure and from then on...and if I am only getting the 3% it will be raised to the 10%....I was leery at first but there is always 2-3 others at same time of infusions and nurse is great....I must have 10 sheets of paper I had to reaad through and sign.....they constantly monitor my bp and temp during infusion.They also do a joint check and blood draws before and after the infusion.I do generally sleep for a few hours after I get home every time.....My study follows you through 66weeks and then phone calls every 6 months up to 3 yrs.Has to be on MTX for over 6 months for RA.....Good luck ...I think you will find it is a good thing and hope you get some fantastic results!!!Judy in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Carol, How long of a drive is it to Gainesville? That part of the state gets me confused sometimes! I am still believing in good things coming our way, sweetie! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 I'll be keeping my fingers crossed all goes well and your accepted. Keep us posted! Hugs, Debbie Mc [ ] I'm so excited! Hi Everyone. I just called this clinical trial in Gainesville, and it's for Remicade. It's a year long study to see if using Remicade will enable patients to decrease their Methotrexate. They preliminarily screened me, and said I qualify. I'm going there tomorrow to have the TB test and the labs done and she said if everything goes well I could get my first infusion as early as next week! I've been having such a hard time, and have been so discouraged. In this trial there is no placebo, so that's a big plus. She said they also do the bone density testing at the beginning and end of the trial---another bonus. I just hope my white blood count is high enough by tomorrow. She said if it isn't, they can try again in 30 days. Are there any things I should know about remicade before I sign on the " dotted line " ? Hope you are all having a great day, too! Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Debbie Mc:Havent seen you post in awhile...how are you doing with the MTX....I was wondering if you had seen any difference yet? Anyway hope you are feeling a little better...Kathi in OK --- Debbie Mc <debmc58@...> wrote: > I'll be keeping my fingers crossed all goes well and > your accepted. Keep us posted! > > Hugs, > Debbie Mc > > [ ] I'm so excited! > > > Hi Everyone. I just called this clinical trial in > Gainesville, and it's for > Remicade. It's a year long study to see if using > Remicade will enable > patients to decrease their Methotrexate. They > preliminarily screened me, > and said I qualify. I'm going there tomorrow to > have the TB test and the > labs done and she said if everything goes well I > could get my first infusion > as early as next week! > > I've been having such a hard time, and have been so > discouraged. In this > trial there is no placebo, so that's a big plus. > She said they also do the > bone density testing at the beginning and end of the > trial---another bonus. > I just hope my white blood count is high enough by > tomorrow. She said if it > isn't, they can try again in 30 days. > > Are there any things I should know about remicade > before I sign on the > " dotted line " ? > > Hope you are all having a great day, too! > > Hugs, > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Good morning Carol, Well, I just got back from the hematologist. Good thing that I did reschedule my appt for the iron infusion. My blood count came up very little from the last infusion and therefore, he gave me twice the amount of iron and as the nurse told me, I definitely need this if I am going into surgery. I am glad that I didn't let my foolish pride make me sicker than I am. And thanks also for your encouraging words. A 2 hour trip is a long way to drive, but if the benefit is there, it is worth the trip. The drive up there should not be too bad, but the trip home might be a little long. I know with me, they pre op me with benadryl and tylenol and then solu medrol. Doesn't put me to sleep, but does relax me sufficiently along with my other meds. I have always been able to drive home, but Vickie does come with me just in case and I don't have nearly as far to go as you do. But please don't let this discourage you. I guess you are probably going for the " pre lim stuff " . Well, I am going to rest a little now. I did sleep last night. Got to sleep about 2 hours earlier than usual and would still probably be sleeping if Ron had not woke me up to go for the iron. It has started to thunder here already, I guess it is going to start early today. Hope all goes well for you and let me know if you have any news. Talk to you later. Gentle, tender, Remicade angel hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 It's about 2 hours - 120 miles. Not too bad of a drive. Although that is 4 hours round trip, but it's an easy drive - on the turnpike and I-75. Love and hugs, Carol Re: [ ] I'm so excited! Carol, How long of a drive is it to Gainesville? That part of the state gets me confused sometimes! I am still believing in good things coming our way, sweetie! Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Kathy! How are you doing? I have been feeling 100% better. Haven't had to up my prednisone because of flares at all in the last two weeks. I was thinking it was just wishful thinking that it was working already, but I think it is. I feel great all week except the pain starts creeping back by Thursday. I take my MTX on Friday night. I haven't had any ill effects from it except that I'm really tired all day Saturday, but by Sunday I feel great again. I haven't heard anything from my doctor about my blood work last week and I see him next week for more. We are going to start tapering the prednisone next week too. I thought it took up to 6 months for MTX to kick in, but what I looked up said anywhere from 3 to 6 weeks. Debbie Mc [ ] I'm so excited! > > > Hi Everyone. I just called this clinical trial in > Gainesville, and it's for > Remicade. It's a year long study to see if using > Remicade will enable > patients to decrease their Methotrexate. They > preliminarily screened me, > and said I qualify. I'm going there tomorrow to > have the TB test and the > labs done and she said if everything goes well I > could get my first infusion > as early as next week! > > I've been having such a hard time, and have been so > discouraged. In this > trial there is no placebo, so that's a big plus. > She said they also do the > bone density testing at the beginning and end of the > trial---another bonus. > I just hope my white blood count is high enough by > tomorrow. She said if it > isn't, they can try again in 30 days. > > Are there any things I should know about remicade > before I sign on the > " dotted line " ? > > Hope you are all having a great day, too! > > Hugs, > Carol > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 I thought you were in a Remicade study, Judy. The study coordinator said on the phone that nobody is getting a placebo in this study, and that it's for a full year. The study is to see if using the Remicade enables the Dr. to reduce the MTX. I'll know more details after I go in today. She asked me if I had any concerns, and I thought: It's FDA approved, there's no chance of a placebo, and they will share the lab work with my rheumy so I won't need to pay for my labs for the next year. Gee.let me think. It sounds like a good deal to me. :-) Hopefully for your next infusion you'll see great results. Keep me informed. Hugs, Carol Re: [ ] I'm so excited! Carol, I am ina remicade study too since May....I have a 33%chance of placebo or 3%solution or 10%solution from day one. I have had 3 infusions already and I think I am getting the 3%because I dont see any real changes yet. My next infusion in Sept I will be getting the real thing at for sure and from then on...and if I am only getting the 3% it will be raised to the 10%....I was leery at first but there is always 2-3 others at same time of infusions and nurse is great....I must have 10 sheets of paper I had to reaad through and sign.....they constantly monitor my bp and temp during infusion.They also do a joint check and blood draws before and after the infusion.I do generally sleep for a few hours after I get home every time.....My study follows you through 66weeks and then phone calls every 6 months up to 3 yrs.Has to be on MTX for over 6 months for RA.....Good luck ...I think you will find it is a good thing and hope you get some fantastic results!!!Judy in AZ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Carol.....yes , I ran into a woman who is in the study you are going to be in .....out of that same office. She was not able to get into my study as it was full. THe dr that runs these studies out of his office has over 50 of them going at all times.They really have a busy set up there. That lady was telling me she was not getting any placebo either and asked me how it was going on mine.....I told her I thought I was getting the placebo or 3% solution so far as I felt no real dramatic change. Told her how I had heard of dramatic resilts in some people so I was waiting for my week 22...I think you are lucky to get the real thing from day one. The only side effects I see are .....sleepiness for a few hours after (and I do wonder if you are driving over 2 hours to get home ....please plan on that side effect somehow if it means getting someone to drive or a room for a night?).Also I found out last time as I didnt take any of my normal meds before I went (as I take water pills, things for blood pressure, Lodine, Norflex, etc)as I didnt want to have to go pee every 30 min. that my blood pressure rose steadily all during the infusion and my legs and feet started to retain fluid as I am there over 3 hours ....other than that I have no problems.....and I asked nurse if she has ever had anyone have any allergic reactions....none so far ....so from now on I am getting up at 5 and taking my meds (I start at 9AM there)and hopefully I'll be done running to bathroom by 9 (or at least not have to go so urgently). I wish you luck....it is a blessing in my opinion that we get a chance to " try " these meds for free to find out if they work and hopefully see beneficial results...Oh and I get paid $350.00 too at the end of the yr. Judy in Az Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Debs, I hope you got some rest today. I'm glad you went to the hematologist and got the iron infusion, especially since your count was so low. You have the CT scan today, too, right? I just got back from Gainesville, and things went really well. I filled out and signed the consent and the medical history, and they gave me the TB test. They showed me where the infusion will be done. It's a nice room, and private since they only do one person at a time. They have a recliner and a TV with a VCR. I go back in on Friday for the physical exam with their Dr., and for the lab work. As long as the lab work is fine, I go for the DEXA bone scan on Thurs. of next week and they are going to try to do my first infusion then. The drive was long, and I'm really sore. I'm using a heating pad while I type. She said that all my meds are fine, but I can't do prednisone tapers if I flare. I would run the risk of being dropped from the study. If I need to change any meds, she said the rheumy has to call them first. At 6 months, they will reduce my Methotrexate by 5 mg if I'm doing well, and if I'm not having great results they will increase either the dosage of Remicade or the frequency of my infusions, or both. For the first infusion I might stay the night, or I will bring a change of clothes and get a hotel if I don't feel up to the drive. Between 2 hrs to get there, 3 hours for the infusion, and 2 hrs to get home that's a long day. I'm glad you were able to sleep last night. Things are looking up for us!!! Love and hugs, Carol Re: [ ] I'm so excited! Good morning Carol, Well, I just got back from the hematologist. Good thing that I did reschedule my appt for the iron infusion. My blood count came up very little from the last infusion and therefore, he gave me twice the amount of iron and as the nurse told me, I definitely need this if I am going into surgery. I am glad that I didn't let my foolish pride make me sicker than I am. And thanks also for your encouraging words. A 2 hour trip is a long way to drive, but if the benefit is there, it is worth the trip. The drive up there should not be too bad, but the trip home might be a little long. I know with me, they pre op me with benadryl and tylenol and then solu medrol. Doesn't put me to sleep, but does relax me sufficiently along with my other meds. I have always been able to drive home, but Vickie does come with me just in case and I don't have nearly as far to go as you do. But please don't let this discourage you. I guess you are probably going for the " pre lim stuff " . Well, I am going to rest a little now. I did sleep last night. Got to sleep about 2 hours earlier than usual and would still probably be sleeping if Ron had not woke me up to go for the iron. It has started to thunder here already, I guess it is going to start early today. Hope all goes well for you and let me know if you have any news. Talk to you later. Gentle, tender, Remicade angel hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Judy, Things went well today, and hopefully I'll get my first infusion late next week. Unlike you, there is no cash at the end of the study, but oh well. I 'm still pleased as punch that I might be able to participate. I am going to take a bag with me for my infusion, and if I need to get a room I will. If I don't feel up to the drive I'm not going to push myself. It is a blessing that we're able to try these meds for free. Love and hugs, Carol Re: [ ] I'm so excited! Carol.....yes , I ran into a woman who is in the study you are going to be in .....out of that same office. She was not able to get into my study as it was full. THe dr that runs these studies out of his office has over 50 of them going at all times.They really have a busy set up there. That lady was telling me she was not getting any placebo either and asked me how it was going on mine.....I told her I thought I was getting the placebo or 3% solution so far as I felt no real dramatic change. Told her how I had heard of dramatic resilts in some people so I was waiting for my week 22...I think you are lucky to get the real thing from day one. The only side effects I see are .....sleepiness for a few hours after (and I do wonder if you are driving over 2 hours to get home ....please plan on that side effect somehow if it means getting someone to drive or a room for a night?).Also I found out last time as I didnt take any of my normal meds before I went (as I take water pills, things for blood pressure, Lodine, Norflex, etc)as I didnt want to have to go pee every 30 min. that my blood pressure rose steadily all during the infusion and my legs and feet started to retain fluid as I am there over 3 hours ....other than that I have no problems.....and I asked nurse if she has ever had anyone have any allergic reactions....none so far ....so from now on I am getting up at 5 and taking my meds (I start at 9AM there)and hopefully I'll be done running to bathroom by 9 (or at least not have to go so urgently). I wish you luck....it is a blessing in my opinion that we get a chance to " try " these meds for free to find out if they work and hopefully see beneficial results...Oh and I get paid $350.00 too at the end of the yr. Judy in Az Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Oh, I forgot to mention that my rheumy's office called, and he says that he thinks it's great for me to do this trial and that I'm a good candidate for Remicade. It made me feel good to have his support. Love and hugs, Carol Re: [ ] I'm so excited! Good morning Carol, Well, I just got back from the hematologist. Good thing that I did reschedule my appt for the iron infusion. My blood count came up very little from the last infusion and therefore, he gave me twice the amount of iron and as the nurse told me, I definitely need this if I am going into surgery. I am glad that I didn't let my foolish pride make me sicker than I am. And thanks also for your encouraging words. A 2 hour trip is a long way to drive, but if the benefit is there, it is worth the trip. The drive up there should not be too bad, but the trip home might be a little long. I know with me, they pre op me with benadryl and tylenol and then solu medrol. Doesn't put me to sleep, but does relax me sufficiently along with my other meds. I have always been able to drive home, but Vickie does come with me just in case and I don't have nearly as far to go as you do. But please don't let this discourage you. I guess you are probably going for the " pre lim stuff " . Well, I am going to rest a little now. I did sleep last night. Got to sleep about 2 hours earlier than usual and would still probably be sleeping if Ron had not woke me up to go for the iron. It has started to thunder here already, I guess it is going to start early today. Hope all goes well for you and let me know if you have any news. Talk to you later. Gentle, tender, Remicade angel hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Carol, I can sense your excitement in your post and I'm so happy you're gonna get to do the trial with Remicade. I sincerely hope it's the medication you need to turn your life into " the Good Ole Days " of feeling good again . My 26 year old daughter in Nashville is taking it. She's wanting me to ask my Dr. about it for myself. Right now my Methotrexate and Ibuprofen seem to be doing fairly well. I wish you could have someone to go with you on the trip to Gainesville... I would hate for you to drive and start feeling fatigued on your way back. Anyway...Best of Luck Hope its just what you need. Hugs, Gail Re: [ ] I'm so excited! Good morning Carol, Well, I just got back from the hematologist. Good thing that I did reschedule my appt for the iron infusion. My blood count came up very little from the last infusion and therefore, he gave me twice the amount of iron and as the nurse told me, I definitely need this if I am going into surgery. I am glad that I didn't let my foolish pride make me sicker than I am. And thanks also for your encouraging words. A 2 hour trip is a long way to drive, but if the benefit is there, it is worth the trip. The drive up there should not be too bad, but the trip home might be a little long. I know with me, they pre op me with benadryl and tylenol and then solu medrol. Doesn't put me to sleep, but does relax me sufficiently along with my other meds. I have always been able to drive home, but Vickie does come with me just in case and I don't have nearly as far to go as you do. But please don't let this discourage you. I guess you are probably going for the " pre lim stuff " . Well, I am going to rest a little now. I did sleep last night. Got to sleep about 2 hours earlier than usual and would still probably be sleeping if Ron had not woke me up to go for the iron. It has started to thunder here already, I guess it is going to start early today. Hope all goes well for you and let me know if you have any news. Talk to you later. Gentle, tender, Remicade angel hugs, Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2002 Report Share Posted July 24, 2002 Hi Carol, By now, I hope that you are sleeping soundly after your big day. I feel better now that I know that you will always have a back-up plan when you go to Gainesville for your Remicade. I was unable to go for my CT scan today as I was just too exhausted. I have rescheduled for tomorrow. I also had a copy of the bone scan faxed over to my ortho. He has changed practices so many times in the last two years that the original report is at the old practice. My tummy is started to distend and I am in so much pain right now. The knee pain is also 10 times worse, probably didn't help having the doc poke around on that knee and move around the broken parts in my knee. Well, sleep well and I will talk with you tomorrow. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Hi Carol, Hope you get good results from the Remicade. I'm still waiting for approval for it. From everything that I've heard, its a good thing. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 on 7/25/02 7:09 PM, staceycrwfrd@... at staceycrwfrd@... wrote: > Hope you get good results from the Remicade. I'm still waiting for approval > for it. From everything that I've heard, its a good thing. What do you have to do to get approval for Remicade? Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 Hi Sue, I am waiting for my insurance company to approve the Remicade treatments. They just approved Prosorba Columb treatments but I couldn't take them because of the limitation of places that do the procedure. Love and Hugs Stacey in PA Quote Link to comment Share on other sites More sharing options...
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