Guest guest Posted July 4, 2010 Report Share Posted July 4, 2010 I was going back and forth on going on this myself. The side effects scare the crap out of me. Here's the "Pre-side effects" (I'll put them at the end). My Pulmonologist wants me to try it. My Rhumatologist is on the borderline and I was scared. So I asked my Internist and made my decision based on his evaluation of it. His take on it is that 40% of people get no relief just degree's of side effects (worse if your on Methotrexate and corticosteriods both of which I'm on. 40% get varying relief from minor to extreme and 20% are horror stories, So his advise is that if the results would out weigh the problems do it. I don't think I'm at that point. At the point when I can't move or breathe and have no where else to go, I'll try it. I'm in a lot of pain, can't walk up and down the stairs twice without using an inhaler and use a cane half the time. But I'm not willing to take the chance for the following side effects yet. Some people on this board have had miracle results and others horrible, so I've come to the decision it's a very individual decision as to where you are and what you expect to get out of it and if it's worth the risk. a lot of people say yes (and one day it may be me, but not today). Good luck with your health and decision. Here's the Pre-side effect's. Best of Health, M WARNINGS SERIOUS INFECTIONS Patients treated with REMICADE® are at increased risk for developing serious infections that may lead to hospitalization or death [see WARNINGS ANDPRECAUTIONS and ADVERSE REACTIONS] Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids. REMICADE should be discontinued if a patient develops a serious infection or sepsis. Reported infections include: Active tuberculosis, including reactivation of latent tuberculosis. Patients with tuberculosis have frequently presented with disseminated or extrapulmonary disease. Patients should be tested for latent tuberculosis before REMICADE use and during therapy.1,2 Treatment for latent infection should be initiated prior to REMICADE use.Invasive fungal infections, including histoplasmosis, coccidioidomycosis, candidiasis, aspergillosis, blastomycosis, and pneumocystosis. Patients with histoplasmosis or other invasive fungal infections may present with disseminated, rather than localized, disease. Antigen and antibody testing for histoplasmosis may be negative in some patients with active infection. Empiric anti-fungal therapy should be considered in patients at risk for invasive fungal infections who develop severe systemic illness.Bacterial, viral and other infections due to opportunistic pathogens. The risks and benefits of treatment with REMICADE should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection. Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with REMICADE, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy. MALIGNANCY Lymphoma and other malignancies, some fatal, have been reported in children and adolescent patients treated with TNF blockers, including REMICADE [see WARNINGS AND PRECAUTIONS]. Postmarketing cases of hepatosplenic T-cell lymphoma (HSTCL), a rare type of T-cell lymphoma, have been reported in patients treated with TNF blockers including REMICADE. These cases have had a very aggressive disease course and have been fatal. All reported REMICADE cases have occurred in patients with Crohn's disease or ulcerative colitis and the majority were in adolescent and young adult males. All of these patients had received treatment with azathioprine or 6-mercaptopurine concomitantly with REMICADE at or prior to diagnosis. Infliximab (Remicade) It looks as though there is a good chance that I shall have to start on Infliximab (Remicade) in the next few weeks. Having read up about it, it seems OK if you pass the prelims, such as the Heif tests for tuberculosis. What the articles don't tell you is what it is like as a patient. Is there anyone who can give me a bit of an insight, so that I can prepare myself for the onslaught? I was just upped to 30mg of methotrexate per week and it's giving a bit of grief. Just seems to make most of the symptoms worse, especially the tiredness. I don't know if this is just that it needs to be at this level and has started to work or whether I am just going through it. On preds again also. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2010 Report Share Posted July 5, 2010 M, I had heard about the TB problem and will be checked with a Heif test before anything is started. There will be other tests as well, I expect. Looking at the research papers on the net, there seems to be some doubt that the Infliximab caused the malignancy, as, statistically at least, there was a certain probability that the patients would have developed cancer anyway, so I am not so scared over that. I guess the only other issue is, as I am about to do a bit of travelling, to avoid some of the overseas diseases. Sub-Saharan Africa would be a problem, for example, due to sleeping sickness and river fever - so avoid at all costs! In the end, we have to be guided by our doctors. They see more than we do, so, assuming you have the confidence, follow their advice. I know I shall. Best regards, Infliximab (Remicade) It looks as though there is a good chance that I shall have to start on Infliximab (Remicade) in the next few weeks. Having read up about it, it seems OK if you pass the prelims, such as the Heif tests for tuberculosis. What the articles don't tell you is what it is like as a patient. Is there anyone who can give me a bit of an insight, so that I can prepare myself for the onslaught? I was just upped to 30mg of methotrexate per week and it's giving a bit of grief. Just seems to make most of the symptoms worse, especially the tiredness. I don't know if this is just that it needs to be at this level and has started to work or whether I am just going through it. On preds again also. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2010 Report Share Posted July 5, 2010 Remicade, well I've been on it for 2 years now, and it's made such a difference in my life, I can tell you. I started it and noticed a difference after the first dose, most don't notice much until after the third dose I am told by other patients on it. I have not had any problems, I do get tired for a day or two after I get it, but then after that I'm pretty good. I fought a year to get on it, and it was worth the fight, I am also on Plaquanil 200mgs in the am and pm, and was off Metotrexate due to liver functions increasing, however, just a fatty liver due to gaining 30 lbs real fast while on Pred. I am back on methotrexate but only 10mgs, I have been on 20mgs, but I dont' thing higher. On the weeks I have my Remicade and Methotrexate, it's a rough week lower GI wise. But worth being on. I know some have good stories to tell and some have bad stories to tell, but the place where I get my Remicade there are a lot of folks on it, for RA and seem to be doing just fine. So good luck, hope all goes well. Blessings, Marla It looks as though there is a good chance that I shall have to start on Infliximab (Remicade) in the next few weeks. Having read up about it, it seems OK if you pass the prelims, such as the Heif tests for tuberculosis. What the articles don't tell you is what it is like as a patient. Is there anyone who can give me a bit of an insight, so that I can prepare myself for the onslaught? I was just upped to 30mg of methotrexate per week and it's giving a bit of grief. Just seems to make most of the symptoms worse, especially the tiredness. I don't know if this is just that it needs to be at this level and has started to work or whether I am just going through it. On preds again also. Best regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2010 Report Share Posted July 5, 2010 , That's really good to know and gives me some confidence. I guess this is what this site is all about. God bless > > > > > > > It looks as though there is a good chance that I shall have to start on > > Infliximab (Remicade) in the next few weeks. Having read up about it, it > > seems OK if you pass the prelims, such as the Heif tests for tuberculosis. > > What the articles don't tell you is what it is like as a patient. Is there > > anyone who can give me a bit of an insight, so that I can prepare myself for > > the onslaught? > > > > I was just upped to 30mg of methotrexate per week and it's giving a bit of > > grief. Just seems to make most of the symptoms worse, especially the > > tiredness. I don't know if this is just that it needs to be at this level > > and has started to work or whether I am just going through it. On preds > > again also. > > > > Best regards, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2010 Report Share Posted July 5, 2010 , it's been 4+ years since I took Mtx, so protocols & recommendations might have changed, but when my local neuro first started me on it, he ordered 25mg weekly. I didn't have any problems with it, but a couple of months after starting it, I saw Dr. Baughman at the U. of Cincinnati. He is one of the top sarc docs in the world. He has done a ton of research & his opinion was that if you didn't get results at 15mg, going up on the dose didn't help, and obviously carried more risk. Liver damage tends to be related to your total accumulated dosage, and at that time at least he felt that once you reached 2 grams (2000mg) total dosage, you needed a liver biopsy to continue the Mtx. His studies showed that blood tests of liver function didn't always correlate with actual damage, based on biopsy. After over 2 years of Mtx, I was approaching that 2 gm mark. All my docs felt that I was in remission, so I tapered off, and have stayed in remission for the past 4 years. Like I said, recommendations may have changed. I'll try to find a recent article by Baughman on Mtx. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver > To: Neurosarcoidosis > Date: Sun, 4 Jul 2010 17:41:10 +0000> Subject: Infliximab (Remicade)> > It looks as though there is a good chance that I shall have to start on Infliximab (Remicade) in the next few weeks. Having read up about it, it seems OK if you pass the prelims, such as the Heif tests for tuberculosis. What the articles don't tell you is what it is like as a patient. Is there anyone who can give me a bit of an insight, so that I can prepare myself for the onslaught?> > I was just upped to 30mg of methotrexate per week and it's giving a bit of grief. Just seems to make most of the symptoms worse, especially the tiredness. I don't know if this is just that it needs to be at this level and has started to work or whether I am just going through it. On preds again also.> > 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/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2010 Report Share Posted July 6, 2010 Rose: That is most useful information and something I will take up Friday week with my neuro. I managed to find some work by Dr. Baughman that looked important, as it covers his work on MTX, although I haven't had enough time to go through it properly. It is called " A clinical approach to the use of methotrexate for sarcoidosis " . There is also one on the use of Infliximab, called " Efficacy of infliximab in extrapulmonary sarcoidosis: results from a randomised trial " , which I must also get to terms with. Both came from the British Medical Journal. I'll get back to you when I have. God bless > > > , it's been 4+ years since I took Mtx, so protocols & recommendations might have changed, but when my local neuro first started me on it, he ordered 25mg weekly. I didn't have any problems with it, but a couple of months after starting it, I saw Dr. Baughman at the U. of Cincinnati. He is one of the top sarc docs in the world. He has done a ton of research & his opinion was that if you didn't get results at 15mg, going up on the dose didn't help, and obviously carried more risk. Liver damage tends to be related to your total accumulated dosage, and at that time at least he felt that once you reached 2 grams (2000mg) total dosage, you needed a liver biopsy to continue the Mtx. His studies showed that blood tests of liver function didn't always correlate with actual damage, based on biopsy. After over 2 years of Mtx, I was approaching that 2 gm mark. All my docs felt that I was in remission, so I tapered off, and have stayed in remission for the past 4 years. > > > > Like I said, recommendations may have changed. I'll try to find a recent article by Baughman on Mtx. > > > > > > Ramblin' Rose > Moderator > > > > " How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these. " > > ~ Washington Carver > > > > > > > To: Neurosarcoidosis > > From: keith@... > > Date: Sun, 4 Jul 2010 17:41:10 +0000 > > Subject: Infliximab (Remicade) > > > > It looks as though there is a good chance that I shall have to start on Infliximab (Remicade) in the next few weeks. Having read up about it, it seems OK if you pass the prelims, such as the Heif tests for tuberculosis. What the articles don't tell you is what it is like as a patient. Is there anyone who can give me a bit of an insight, so that I can prepare myself for the onslaught? > > > > I was just upped to 30mg of methotrexate per week and it's giving a bit of grief. Just seems to make most of the symptoms worse, especially the tiredness. I don't know if this is just that it needs to be at this level and has started to work or whether I am just going through it. On preds again also. > > > > 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/group/Neurosarcoidosis/database > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.