Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 Also, 3 books where suggested when I first joined this site to read and to pass on to Physicians that believe this is a painless disease. if anyone remembers them can you please forward names. Thank you Remacade Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 Mitch, Remicade has been excellant for me. I do find that it puts me to sleep even during the infusion, and then I get home, sleep for most of that day and the next. The systemic inflammation in my spine, hands, feet-- really clears up for a couple of weeks. I am at a max dose-- 10mg/kg every 28 days. I find that my brain fog clears up, my breathing is much better for 3 wks. I have put on weight since I started the Remicade-- and from what I hear they are now telling you that 25-80 lbs is normal. My hair is definately thinner-- although not gone. I don't have any nausea if I eat a decent meal before my infusion-- but I wouldn't recommend it on an empty stomach. I was totally amazed when I was in the clinical trial-- 10 min into the first infusion- and I had the sensation of sucking on a lead pipe--but that doesn't seem to be a problem now-- and it's been 4 yrs or so. My thumbs had been contracted against the palm of my hands-- and 3 hrs later when I got on the plane back to Sacramento-- I was able to open my hand up fully. Fortunately, I had worked for a hand specialist (P.T.) and he had me massaging that tendon that allows the flexion of the thumbs-- so i'm sure that helped. I also noted that the pain in my spine was gone! Needless to say, I'm good even with some progression in some parts of my body-- my lungs and heart are still compromised. I honestly believe it's more from last years fires in No. Calif-- we were square in the middle of them- and I ended up with a collapsed lung-- which couldn't be seen on the xrays (it had folded under and back towards my back) and so it wasn't picked up that there was a major pneumonia cooking in it, along with the decreased volume. I don't cough much with my sarc-- so we really weren't getting the "normal" clues. What we have learned with me being on Plaquenil, Methotrexate and Remicade is that if I get sick, my blood counts are going to come up into the low normal range, so we can't count on blood tests to accurately tell the docs that I am sick. Getting an ER doc to realize that is what is hard. With Remicade and the others-- I do have to get a LFT and CBC monthly-- to make sure I don't end up with lymphoma-- or other blood issues. As long as I take the milk thistle capsules-- all is good! Hope this helps, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Sun, November 15, 2009 10:15:39 AMSubject: Re: Remacade Also, 3 books where suggested when I first joined this site to read and to pass on to Physicians that believe this is a painless disease. if anyone remembers them can you please forward names. Thank you Remacade Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 Here I am going backwards on my emails again, as when I see all the ones I've missed I go into shut down mode. Remicade, well I've been on it for a year and a half now. It's really helped me gain back some of the use of my brain, I had brain fog really bad. I regained my balance to a point, over all I know I feel better, and can tell when it's time for the next infusion. Side effects, not many, It makes me tired for a couple days, I have a some increased pain for those first few days too, but then decreased overall. If you have any specific questions to ask, go right ahead. Good luck,Marla Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Hi, I opted to use Methotrexate instead of Remicade and I'm very happy I did. The majority of my original symptoms are gone, I'm able to work a 40 hr week. The thought of gaining 25-80lbs is out of the question. Being over weight only adds to our illness and creates others. Being overweight a killer for your heart and bones, increases blood pressure, sleeping and breathing problems, etc. Everyone's personal situation is different but I would only recommend Remicade once everything else has failed. Do everything you can to heal yourself, eat right, exercise and get plenty of natural vitamin D (sunshine). Just my opinion, but it's been working well for me for 2 1/2 years. feel well, Rick Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 My experience is much like 's, however, I have now been on it for about 2yrs, 4mos. and since Jan/Feb 2009 dose, we have been questioning whether or not it is still as effective as it once was. I take it in combination with Methotrexate - now at 10mg per week. The past two doses have been more obvious in their lack of assistance, compared to the past. I get 500mg every 6 weeks and have read about the highest dose amongst various folks is 900 every 4 weeks. My daughter also was prescribed Remicade for Crohns Disease until her Dr abruptly retired and for a short time thereafter, but truly misses it now and no one will re-prescribe unless she repeats all of her original diagnostics again. Unfortunately, with Remicade doing its job and pushing her into remission, the initial docs interpreted it as her no longer having Crohns or never having had it!!! It was a mess and she has completely backed off now. Good Luck!! I hope that it helps you!! Cheryl M. > > > > > > > Remacade, can you please tell me your guys experience and side effects? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Hi Marla, I'm sorry that you've been battling this for so long. It's very possible I might wind up on Remicade someday. I'm not knocking Remicade, it has done wonders for many, I'm just avoiding it. From observing posts here I've concluded that everyone has their own individual symptoms and remedies. Doctors don't really have a clue about NS yet, it's all trial and error and we are their guinea pigs. It's important to follow your own instincts and keep faith. I wish you the very best, Rick Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Rick, I agree with you-- had I not already totally exhausted the other choices (I've had sarc for 19 yrs) doing Prednisone for 2/12 yrs at high dose, then off for 4 yrs, when the sarc came back, they insisted I go back on pred-- at 60mg and it took 18mo to get off it. I had ALL the side effects, high blood pressure, weight gain, depression, anxiety, hyperactivity, sleeplessness, and my sarc was still raging throughout my body. We went to Plaquenil, and it helped some of the problems, we then added Methotrexate and it helped some of the problems-- but I still had other issues. We then tried Imuran, and my liver enzymes went thru the roof- so that was stopped in the first month. From there we tried Arava in place of the Imuran-- and I was allergic to it-- so that was when I started looking at the BRM's. My insurance wouldn't cover any of them- because they aren't FDA approved for sarc- so my Rheumi suggested I look into clinical trials. I came across the one for Remicade-- totally by accident. I was reading an article on pulm sarc and I always scroll thru the articles cited (great way to find docs interested in sarc) and found Dr. Sharma's name, along with a Fellow that was doing his study on Inflixamab (Remicade) and pulmonary and ocular sarc. I clicked on the link-- and it took me to the info on the study. I sent an email-- I met all the criteria. I had included my phone # along with my history and forgot all about it. Six months later, I got an email from a the Fellow-- and I'd forgotten all about ever sending this in. Since I didn't recognize the name of the doc, or the website, I deleted it- as spam! Fortunately, the doc figured that this was what I'd do-- so he called! I went to LA and the day I got there, my PFT was 1% point higher than what was accepted to qualify. They debated as to whether or not to take me. Because of my knowledge of this disease, and my history of having tried virtually all the other choices-- they decided to accept me into the trial. I'm glad they did. It gave me back my life. Even with the positive effects of Remicade during the trial, my insurance still refused to pay for it. Dr. Sharma wrote them a letter stating either get me on the Remicade or put me on a lung transplant list-- so they opted for Remicade. It is now paid. Now, that being said, it is not for everyone. Darlene, Kim, and others had serious allergies to it. Serious allergies! Many times over the years, I've advocated that with sarc, your docs are going to insist you do prednisone first. It's what they know. Then when that doesn't work, or the side effects are too nasty-- they go up the list of alternatives-- with the least "offensive" meds and hope that one will be your magic. What they do know now is that when they put us on pred, then withdraw it-- your symptoms come back-- whether in days, weeks or years-- they come back. By then, it's generally become a systemic issue. (There is the article on this in the ARCHIVES) Sadly, since they still have not figured out what causes sarc-- we are the guinea pigs they are practicing on. The scientists know that it will be a cocktail of sorts- that will work for us. What that combination is-- is different for each of us. At this point, it's treat the symptoms, to make life as enjoyable as it can be. It's not perfect-- and it takes time (years) to get the right mix. It also seems like we have to tweak our combination from time to time. For me, that's ok. I know I've had 7 yrs I would not have had otherwise. Be well, Tracie NS Co-owner/moderator To: Neurosarcoidosis Sent: Mon, November 16, 2009 5:03:55 AMSubject: Re: Remacade Hi, I opted to use Methotrexate instead of Remicade and I'm very happy I did. The majority of my original symptoms are gone, I'm able to work a 40 hr week. The thought of gaining 25-80lbs is out of the question. Being over weight only adds to our illness and creates others. Being overweight a killer for your heart and bones, increases blood pressure, sleeping and breathing problems, etc. Everyone's personal situation is different but I would only recommend Remicade once everything else has failed. Do everything you can to heal yourself, eat right, exercise and get plenty of natural vitamin D (sunshine). Just my opinion, but it's been working well for me for 2 1/2 years. feel well, Rick Remacade, can you please tell me your guys experience and side effects? Quote Link to comment Share on other sites More sharing options...
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