Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 I had my third Remicade treatment today. I feel like a new person. My P is all but gone and I haven't had to take any pain medication for almost a month. What a miracle! >From: " Boyd " <celticangyl@...> >Reply- > " Psoriatic Arthritis Group " < > >Subject: [ ] Remicade >Date: Sat, 19 Apr 2003 21:23:50 -0400 > _________________________________________________________________ The new MSN 8: advanced junk mail protection and 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 > Yeppers, fibro too... if I could only get someone now to help me with the sleep issues. I am awaiting a ct scan of my head. I've been having horrid headaches, long before remicade began and high blood pressure all of a sudden, prior ot remicade also... UGH what a wait > > --I have the headaches and sleep troubles too. My headaches were finally diagnosed as migraines but I did not have a CT scan. The trigger points in myhead flare at the same time and I get nauseated. Made an appt for a sleep lab but the Dr. didn't want to wire me up in the lab because my main problem was insomnia. Atarax, which I have on hand for itching of P helps me sleep the best but I am very tired the next day. Good Luck with all of that too! Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2003 Report Share Posted April 21, 2003 I've always had problems with sleep. Now they seem to be worse some nights I almost don't. At least I'm retired and don't have to fight the very early get me ups now. I, too, have problems with headaches...mostly I think from sinusitis caused by " not allergies, just sensativities " I'm being sarcastic because the ENT did blood work, no evidence of allergies, but the drainage goes on & on & on...But I'll read some other people trials and say, Thank You Sincerely For Mine. s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2003 Report Share Posted May 17, 2003 ek. Has anyone been on Remicade? > If so what were the results and have you continued > on the regime indefinitely. Hi Genelle, I have been on Remicade for 8 months. Within a week my skin showed improvement and within 2 weeks my skin had completely cleared (first time in 27 years). It took longer for me to notice improvement in my arthritis but after about 3 or 4 months I did. I have a severe advanced case and the Remicade has not complstely taken the pain away. It seems to help my hands and feet more than my spine. My plan is to stay on the Remicade; at least until I don't think it is helping me anymore. Good Luck! I hope you will be as happy as I have been Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2003 Report Share Posted May 23, 2003 it has helped me tremendously, the first visit I was almost 90% pain free, and by the second dose, my skin was completely clear. I love it, and wouldn't change a thing!!! [ ] Re: Remicade > ek. Has anyone been on Remicade? > > If so what were the results and have you continued > > on the regime indefinitely. > > Hi Genelle, > > I have been on Remicade for 8 months. Within a week my skin showed > improvement and within 2 weeks my skin had completely cleared (first > time in 27 years). It took longer for me to notice improvement in my > arthritis but after about 3 or 4 months I did. I have a severe > advanced case and the Remicade has not complstely taken the pain > away. It seems to help my hands and feet more than my spine. My plan > is to stay on the Remicade; at least until I don't think it is > helping me anymore. > > Good Luck! I hope you will be as happy as I have been > Marti > > > > > Please visit our Psoriatic Arthritis Group's informational web page at: > http://www.wpunj.edu/pa/ -- created and edited by list member aka(raharris@...). > > Also,in August 2001,list member Jack aka Cornishpro@... began to conduct extensive research which he publishes as the " Psoriatic Arthritis Research Newsletter " , monthly in our email and digest format. Many thanks to Jack. Back issues of the newsletter are stored on our PA webpage as well as the archives of the list. > > Don't forget that the list archives comprise a tremendous amount of information (Over three years of messages and answers).Feel free to browse them at your convenience. > > LET'S HEAR FROM SOME OF YOU LURKERS out there! If you have a comment or question, chances are there is a person who has been around a while who can help you out with AT LEAST an educated guess for an answer! If not,we can steer you in the right direction with a good website to go to, > > Blessings and Peace, > > Atwood-Stack, Founder > Alan , Web & List Editor > Jack , Newsletter Editor > Pat Bias, List Editor > Ron Dotson, List Editor > Orin, List Editor > , List Editor > and any others who help in any way (thank you!) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 In a message dated 7/16/2003 7:25:20 PM Eastern Daylight Time, robinanne53@... writes: > Hi everyone, > > I just want to share that I had my first Remicade infusion yesterday. I > must say I am really pleased at the results. I woke up this morning almost pain > free. Hi Robin, I know you must have posted this before but have you tried anything else before the Remicade? I am so happy for you that it is working so nicely. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2003 Report Share Posted July 16, 2003 Good for you, I will go to the doctor tomorrow morning to get my first shot of Enbrel, I hope i will have good news too :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Good luck to you Jean!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2003 Report Share Posted July 17, 2003 Hi Janet, I am also on MTX. The dose had to be cut back though because of my liver enzymes rising, so my doctor added the Remicade. I cannot believe the difference. I had taken Relafin, but the doctor switched it with Lodine also because of my blood test results. Of course, I take the folic acid every day too. Thank you Janet. I hope you are doing ok too. Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Yes, I was > running and I did a little leap too. They were astounded. My dad > commented that he had not seen me move that fast in five years. This brought tears to my eyes. This is wonderful!!! I am so thankful you've had such relief. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 In a message dated 8/5/2003 1:40:19 PM Eastern Daylight Time, mmk0921@... writes: > Does anyone in the group use Remicade? What are your > thoughts/experiences? I am not taking Remicade and the Enbrel is not working very well. How long of a time do you spend at the doctor getting the infusion? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hi , My understanding is that in the UK, Remiicade is only being considered for Rheumatoid Arthritis and is still in clinical trials. I tried to get myself on a trial of Remicade trial through the doctor in London leading the trial but was told only RA not PA. But I stand to be corrected and would love to hear from anyone in the UK who has taken it ? Allan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 , I am so glad to see your post. I too have been receiving Remicade infusions for a little over 2 years. I am curious about the amount you receive and cost. I am in the 150 lb bracket and get 4 vials of remicade. I did so good before..................energy, that thing I thought I'd lost for life and the joint movement and lack of pain...............BUT, it is back, the awful awful tiredness and joint pain and grinding of my knees, painful hands, neck, hips. My costs are over $9,000 for the infusion and over $8,000 of that is DRUG only. I have been receiving these at the hospital out patient clinic which I have learned that they are able to chare more WHY???????? I've asked my rheumy to increase the remicade and he said I was at max dosage but I've talked to a nurse who has 80 patients on remicade and she said I could easily have 5 vials and up to 9. I want to have all info I can before I go to the rheumy next week. I get my 6 week infusion on Thursday of this week. Thanks everyone for the support. My husband and friend think I should start checking into SS Disability. I just don't know if I'm ready for that. I work full time - computer work - but have good benefits of health insurance, life insurance and vacation time. Nanc in Penna. [ ] Remicade I see that many of you use Enbrel but haven't seen much about Remicade. I've been on Remicade for almost 2 years now and it has changed my life. Even with this latest flare-up, Remicade (in conjunction with some other 'stuff this time') gave me almost immediate relief of both my PA and psoriasis. Over the course of only a few days the psoriasis was completely gone! After 16 weeks I have just about full range of motion in that " giant foam finger " that I had during the flare up and it is back to normal size. I remember when I started the infusions back in July of 2001. I had one treatment and was feeling AWESOME. My parents came to vist me in Georgia and had not seen me in about 6 months. They pulled into the driveway of my house and I came running out of the door. Yes, I was running and I did a little leap too. They were astounded. My dad commented that he had not seen me move that fast in five years. I am sure that self-injecting the Enbrel is quite a bit more convenient than the every-8-week infusion of Remicade. I'm not sure I could do the self-injection (what am I saying, to feel better I'd do just about anything). I've found that it is becoming more common - - my current rheumy has a full-time nurse and does it right in her office so long-gone are the scheduling problems I used to run into. Does anyone in the group use Remicade? What are your thoughts/experiences? North Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Hello Randy: Orin is correct, Remicade was approved for use just a couple of years ago from the FDA. So far the side-effects for me have been good (better skin, little to no plaquing) as well as little to no swelling in my joints, decreased pain in my joints, no morning back stiffness, etc. The general feeling of my rheumatologist is that because Remicade is used up while destroying the tumor necrosis factor that causes the chemical that causes the inflammation, it does not store itself in the body like Methotrexate, steroids or Cyclosporine type medications. Take care, Sally in Grass Valley [ ] remicade can anyone tell me were i can find out the long term affects of remicade treatment, i have been on it for 2 years with good results. i would also like info. on support groups in the cincinnati,ohio area thank you randy Ed Note Nobody can answer the questions as to the long term safety of Remicade because few people have been using it longer than you have. The book on long term safety of Remicade is in part being written based on the results of your response to it. Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2003 Report Share Posted September 2, 2003 Randy, I've been on Remicade for 2 1/2 years. I had great success with it until the last 6 months when I started noticing a decline. My first realization was that my energy level the day AFTER the infusion was not what it had been. I had so much more energy the day after my infusion and I would get my cleaning done in the next week while I was GOOD. :-) Then I would know when I had two weeks left and then one week left till infusion time. I have complained to my rheumy that the drug isn't doing the job. I've learned that another doc would have me on 500 mg rather than the 400 I'm currently receiving. I've been at the 400 level for about a year. Rheumy increased my mtx to 8 tabs per week which was an increase of 2 tabs. There is a remicare website that you can go to for further info. Nanc [ ] remicade can anyone tell me were i can find out the long term affects of remicade treatment, i have been on it for 2 years with good results. i would also like info. on support groups in the cincinnati,ohio area thank you randy Ed Note Nobody can answer the questions as to the long term safety of Remicade because few people have been using it longer than you have. The book on long term safety of Remicade is in part being written based on the results of your response to it. Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2003 Report Share Posted September 3, 2003 thank you for your help [ ] remicade can anyone tell me were i can find out the long term affects of remicade treatment, i have been on it for 2 years with good results. i would also like info. on support groups in the cincinnati,ohio area thank you randy Ed Note Nobody can answer the questions as to the long term safety of Remicade because few people have been using it longer than you have. The book on long term safety of Remicade is in part being written based on the results of your response to it. Orin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 Hello, The meds are just a precaution. Nothing to worry. I was given an antihistimine the first couple of times too. Remicade's been great for me and the infusions can be a nice time to read and relax. Good luck. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 -Hi Deb, My first infusion I got a headache(minor) and a little dizzy. They changed the iv machine to push the liquid in more slowly and that took care of the dizziness. Also, I got a few hives several days after my infusion so they advised me to take benadryl before the infusion....it has helped. Maybe your doc's office just covers these bases to start off. good Luck. Most people tolerate it very well. Marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 I actually called the Dr. back becaue I have asthma as well and was concerned. They said the tylenol and antihistamine is stardard procedure per the drug company and that they had only a couple of people that had reactions. They said it didn't have to be Benadryl it could be claitin, zyrtec or something similiar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 I actually called the Dr. back becaue I have asthma as well and was concerned. They said the tylenol and antihistamine is stardard procedure per the drug company and that they had only a couple of people that had reactions. They said it didn't have to be Benadryl it could be claitin, zyrtec or something similiar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 I am on bextra and have had very good results with it. I use it along with the Enbrel. I can really tell when I don't use it. I use 20 mg 2 times a day. The normal dose is once a day but that doesn't last me. > [ ] Remicaide > > > > If you are on Remicaide,how often do get get an injection? > > Can you feel the difference when it is getting close to time for > > another injection? > > Also is anyone on Bextra? > > Seem to be full of questions today,I am so grateful for this group to > > turn to and feel your care.(-: > > thanks all > > hb > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2004 Report Share Posted May 9, 2004 I am on remicade and have been for over two years. I am on an eight week cycle, and yes I can tell by about the sixth week that I need it. My Dr. increased the dosage and now is going to increase the frequency to every six weeks. I love Remicade, but am afraid that it, like all other meds I have been on is starting to lose its effectiveness. I am considering Humira. [ ] Remicaide > If you are on Remicaide,how often do get get an injection? > Can you feel the difference when it is getting close to time for > another injection? > Also is anyone on Bextra? > Seem to be full of questions today,I am so grateful for this group to > turn to and feel your care.(-: > thanks all > hb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Duane and Bob, Welcome to you both. Its good when you are reading some of these mails and you are sitting saying to yourself, " I could have written that! That's me! " Hope this group helps, Cheers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 Hi Duane and welcome to the group...it's a tremendous feeling of relief to know that your not alone. In reading member's posts we can see so many similarities in our symptoms and medical history that subsequently led to a PA diagnosis. Perhaps we can all someday make a difference in PA awareness, it seems to be the " hidden " arthritis. Jane --- Duane <parcells@...> wrote: > Hi (been lurking for weeks now) > > > I get Remicade infusions every 4 weeks. I can tell > when it is going to > " crash " > Usually in the 3rd week. Stress will make it wear > off faster too. > It's still a miracle drug. So is this group. After > 30 years of a list of > symptoms that had little or no meaning to doctors > this group has let me > know that I'm ok. My body has issues but now that I > know there are others > with the exact same things going on........ > > Thanks to all of you who talk about your symptoms > here. Cried for the first > week. Read all the threads for the second one. > Studied the info and websites > that pass through here for the third week. It's been > overwhelming at times > to know after all these years I have company. > > Thanks to all of you for being here. > > Duane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Lynn, I hope that you can start back on the Remciade. Since you took it before, you will know what to expect. I hope that the insurance comes through, and you can get started soon. I just don't understand why we have so many problems with insurance? They rip us off, and then we still have to beg for help, it upsets me a little:( I hope that you enjoy the weekend, and get some good news for us, telling us your approved for your med, take care, Tawny PS:Happy Halloween, don't eat too much candy!!! > I have been in such a terrible flare that yesterday the Rheumy decided > maybe it is time for remicade. I have held off doing this for a long > time. But the last couple of month have been terrible. I think it > started when I went back to school. I have to wait and see if my > insurance will pay for it. When I called they told me no. However, the > Rheumy says they will pay for it. I tried remicade four years ago and > it was great. I had to stop because of stomach problems. Right now the > worse is I wake up in pain. So I will have to wait and see. > Hope everyone is doing okay and will be able to enjoy Halloween. > Lynn (MeMom) Quote Link to comment Share on other sites More sharing options...
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