My doctor is leaning towards remi because nothing else has worked and I have a very stubborn case of UP. Just wondering what if any side effects anyone has had from this drug. And is it possible to only have a few treatments and stop? Or am I going to be on this forever?
It's not recommended that you only do a few and than stop because you can build antibodies against the Remicade if you were to do that - meaning that it won't work again or you can possibly have reactions.
The only side effect I get from the Remi is that I am more tired than before. When I first started, it gave me headaches and I had mild hair loss. I also tend to have a lot of muscle cramping the day of the infusion but that is about it.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular
The only side effect I get from the Remi is that I am more tired than before. When I first started, it gave me headaches and I had mild hair loss. I also tend to have a lot of muscle cramping the day of the infusion but that is about it.
SHERRY
Moderator-Allergies/Asthma and Alzheimer's, Co-moderator-UC
Diagnosed Left sided UC in '92 - meds: 6mp, Colazal, Remicade and Bentyl*Unable to tolerate ALL mesalamines*, in '11 diagnosed with IBS, Diverticulosis, Fibromylagia..I also have Sacroiilitis, Scoliosis, Raynauds, OA, PA, Rosacea, Psoriasis, Dry Eye and allergies controlled by Zyrtec and Singular
I get moderate join pains about everywhere. Also Remi is not really effective for me. In fact, I still have light bleeding now. I'm on MAX dose, 640mg. That's 10 of those little bottles.
This is my 5-6 infusion who knows. The first infusion in the beginning worked well and it went downhill from there regardless if we've increased the dose.
Theoretically, I would have to increase the dose pass MAX...like 800mg or 1000mg...but that is stupid. It's not really working as it should.
I know when the medication is subsiding, my joint pain start disapearing, and my colitis symptoms are returning.
DX Ulcerative Colitis (panchocolitis) - May 2011.
"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump
This is my 5-6 infusion who knows. The first infusion in the beginning worked well and it went downhill from there regardless if we've increased the dose.
Theoretically, I would have to increase the dose pass MAX...like 800mg or 1000mg...but that is stupid. It's not really working as it should.
I know when the medication is subsiding, my joint pain start disapearing, and my colitis symptoms are returning.
DX Ulcerative Colitis (panchocolitis) - May 2011.
"Life is like a box of chocolates; you never know what you' gonna get. " by Forrest Gump
I've been on Remicade since Aug of 2010, started at the 5mg per Kilogram dose or whatever the starter dose is and they have since doubled it, so whatever the bigger dose is, guessing it's the 10mg per body Kilo, that's what I'm on now every six weeks. The only side effects I've had are a slight windburned look or redness on my face especially after I shave (never had any shaving irritation before) and maybe some slight redness or splotchiness on my upper arms after a nice long hot shower, and that's it. I'm tired the day of the infusion but usually bounce back the next day or the day after next. I guess I'm lucky that I tolerate the drug pretty well, I've heard some nightmares about side effects and how some people can't tolerate it well so hopefully you won't fall into that group. I do take one Claritin daily to help with the skin reaction and that has helped tremendously.
Be well, E...
43 Year Old Male, Diagnosed with Pancolitis Sept 2009, some remission currently only Left-Sided Colitis active, Only full remission was with Prednisone.
Drugs - Remicade (every 6 weeks), Hydrocortisone AC 25mg Butt Bullets as needed, Prednisone (quick tapers) as needed.
Supplements and Vitamins - You name it I'm taking it!
VSL#3 DS, 1 or 2 packets daily.
43 Year Old Male, Diagnosed with Pancolitis Sept 2009, some remission currently only Left-Sided Colitis active, Only full remission was with Prednisone.
Drugs - Remicade (every 6 weeks), Hydrocortisone AC 25mg Butt Bullets as needed, Prednisone (quick tapers) as needed.
Supplements and Vitamins - You name it I'm taking it!
VSL#3 DS, 1 or 2 packets daily.
I don't find I'm tired at all after my treatments. I can't comment on joint pain since I had it before I started the Remicade, although it seems to be easing up. Just had my 3rd treatment and I haven't noticed anything other then feeling better, so good luck if you do go on it!
Like Red said, it's not advised to stop treatment, although some people do and have no problems going back on, but it's a chance I wouldn't be willing to take.
Starting Remicade March 5th 2012
Multi Vitamins
Been on: Asacol, Sulfasalazine, Prednisone, Imuran
Like Red said, it's not advised to stop treatment, although some people do and have no problems going back on, but it's a chance I wouldn't be willing to take.
Starting Remicade March 5th 2012
Multi Vitamins
Been on: Asacol, Sulfasalazine, Prednisone, Imuran
I was worried about side-effects as well, but I must say that I am VERY happy with how my first infusion went. It's only been three days, and I know sometimes reactions don't happen until the second or third treatment, but so far I have not experienced a SINGLE side-effect. The benadryl they gave me beforehand made me a tiny bit sleepy, but aside from that I've been feeling GREAT! If you want to read about it in more detail, click on the link to my blog below - I just wrote a post all about my first treatment.
Follow my story: ronnielee-fightingforit.blogspot.com
32-year-old single female (teacher)
Dx mild/moderate ulcerative colitis 1995
Dx severe ulcerative pancolitis 2011
Imuran (tapering on), Prednisone (40mgs), Asacol HD (4800mgs), Mesalamine Enema, MMJ
Follow my story: ronnielee-fightingforit.blogspot.com
32-year-old single female (teacher)
Dx mild/moderate ulcerative colitis 1995
Dx severe ulcerative pancolitis 2011
Imuran (tapering on), Prednisone (40mgs), Asacol HD (4800mgs), Mesalamine Enema, MMJ
Remicade works reasonably well before you become immune to it. The side effects I have suffered are wind-burn face (very sore and dry), itchy eyes which always seen to be watering and cold sores. But compared to the pain of UC I can live with those slight inconveniences.
Remicade 10mg/kg every 7 weeks
Asacol 4 tablets twice a day
Remicade 10mg/kg every 7 weeks
Asacol 4 tablets twice a day
No side effects (7 yr old). He has been on Remi for a year and a half now. He has been getting strep throat often though? Not sure if theres a link or not.....the GI says no? We hope to wean off the Remi in the future.
7yr old son (Jack). Diagnosed severe UC, Aug, 2010.
Cdiff infection from 3 week inpatient stay.
Severe relapsing cdiff and uc flares until Oct. 2011.
Fecal transplant in Oct. 2011....Remission!
Current med: 7-8 week interval Remicade
7yr old son (Jack). Diagnosed severe UC, Aug, 2010.
Cdiff infection from 3 week inpatient stay.
Severe relapsing cdiff and uc flares until Oct. 2011.
Fecal transplant in Oct. 2011....Remission!
Current med: 7-8 week interval Remicade
I've been on remi for a year and for the first 6 months while I was still healing, I would get very tired for the next two days after the infusion, but that was it. Now I feel great, I have no side effects (that I am aware of ; )
I get benadryl and tylenol prior to each infusion.
My only regret is waiting 4 years to go on remicade, I could have had a better quality of life during that time.
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.
I get benadryl and tylenol prior to each infusion.
My only regret is waiting 4 years to go on remicade, I could have had a better quality of life during that time.
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.
Also, I have only had one basic cold since remi (stuffy nose/congestion/small cough) which lasted 3 weeks, a bit longer than they ususally do in Oct 2011.
I get the flu shot every year too.
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.
I get the flu shot every year too.
UC Pancolitis: dx'd 2000; Remicade since 4/25/11, every 8 weeks. Kidney Disease (Minimal Change Disease): dx'd 2007 caused by 5ASA's (thank you sulfsalazine, lialda and asacol). Current meds: Remicade & prenatal vitamin. I feel better than I have in years being off the ton of medication I was on before.
It has been a colon saver for my daughter. No side affects to speak of. Longer term is unknown, but a very famous GI doc saidthis weekend at a CCFA event--- if Remicade was one dollar(instead of 5-10k), it would be the first line of defense for inflammation. Side affects way less that Pred, but Pred is cheap.
My daughter is having some secondary infections that are worrysome, but I am told it is not the Remi specifically.
Daughter, 18 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Cortifoam enemas, Rowasa,Prevacid, Flagyl, Prednisone- 60 mg to 0, 4 major flares '08-09.Hospital 6 x. Added IBS diagnosis 10 -11.
Remicade 8mg per kilo@ 7wks, since 10-08. Dose adjusted a few times. Still on 6mp (50mg)and Colazal W/ Remi. Remission. 4-09- to present!!!
My daughter is having some secondary infections that are worrysome, but I am told it is not the Remi specifically.
Daughter, 18 diagnosed 1-08 w/ UC .
Previous drug sampling: Asacol, Cortifoam enemas, Rowasa,Prevacid, Flagyl, Prednisone- 60 mg to 0, 4 major flares '08-09.Hospital 6 x. Added IBS diagnosis 10 -11.
Remicade 8mg per kilo@ 7wks, since 10-08. Dose adjusted a few times. Still on 6mp (50mg)and Colazal W/ Remi. Remission. 4-09- to present!!!
Katmom,
That's an interesting point. My daughter's GI is a consultant for centocaur and is internationally respected etc but she is adamant that Remi be used as a last resort med. I know this because we prefer remi to imuran (turns out my daughter can't have remi but that's another story) and she absolutely tried to dissuade us from doing this. I'm not saying this to scare monger, just as another perspective to the doc you mentioned.
I don't know about the side effects of remi other than the ones posted on the internet but I do think they are quite rare and it's worth a shot. My concern (as a parent) would be the long term unknowns of this drug (this is why the docs we work with are conservative with it, or at least one reason why). If it were me in this situation, however, I would try it without reservation.
That's an interesting point. My daughter's GI is a consultant for centocaur and is internationally respected etc but she is adamant that Remi be used as a last resort med. I know this because we prefer remi to imuran (turns out my daughter can't have remi but that's another story) and she absolutely tried to dissuade us from doing this. I'm not saying this to scare monger, just as another perspective to the doc you mentioned.
I don't know about the side effects of remi other than the ones posted on the internet but I do think they are quite rare and it's worth a shot. My concern (as a parent) would be the long term unknowns of this drug (this is why the docs we work with are conservative with it, or at least one reason why). If it were me in this situation, however, I would try it without reservation.