How Sick Do Ya'll Get After Remicade?

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erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 10/26/2006 4:14 PM (GMT -7)   
okey-doke.  just wanna know if this is the "norm" or should i be taking more aggressive action.
had 2 infusions already. blood pressure drops to about 88/50 but then slowly rises; DR.s & RNs are aware.  next day feel like the "flu"  body aches & really tired. day after that....nonstop diarrhea & it's at every time i put something in my mouth...so like it comes every 1/2 hour all day.  left sided bowel pain. GI is aware.  says, could be from Remicade...wait it out, keep to liquid diet.
also, caught a wicked infection 4 days after infusions. right side of my face/neck/glands all swollen, sneezing....a cold/flu thing. (was treated with antibiotics of course). starting to feel the SAME way again this time as well.
happen to anyone else?
just wondering?
thank you. :-)
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


elcamino
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Date Joined Sep 2005
Total Posts : 1740
   Posted 10/26/2006 8:03 PM (GMT -7)   
Erin, I've never taken remicade, so I don't know first hand. But I've never heard anyone from the crohn's forum (and a lot of them take the cade) complain of those sx. In fact, they often report that their lower GI problems are 100% better after an infusion? And the effect is immediate? The blood pressure thing is concerning too, but as long as your docs are aware. I would be a bit vigilant, though, if I were you. I've learned that my doctors do NOT know everything, but they cover well. They may be likely to give me a drug just because they didn't know what else to do (a GI doctor did this to me, but it thankfully wasn't remicade; it was entocort). If you're still feeling bad in a couple of days, think about calling your doctor. I hope you feel better soon.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


starrnr
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Date Joined Dec 2005
Total Posts : 1782
   Posted 10/26/2006 8:37 PM (GMT -7)   
Hi Erin. I'm on Remicade for my 'trifecta!" I just had my 5th infusion last week. My blood pressure goes way down during my infusion (my 1st infusion, my bp was at 96/66 and I freaked - they weren't worried at all). I understand it can do that and as long as you are monitored, you should be fine. Flu like symptoms and fatigue are common. I get fatigued and headaches a couple of days after my infusion. Nothing serious, just obnoxious!

It sounds suspiciously (and I'm only guessing here) like you might be having some sort of reaction to the Remicade. Do they give you any pre-meds (or do you take anything)? Have you tried taking a Benadryl beforehand? If you haven't called your doctor to tell him/her about this, please do so as soon as possible - just to make sure you're not having a reaction.

It shouldn't be turning your stomach/intestines inside out like this either-- most of those with Crohn's and UC get major benefits from it and the swelling doesn't sound right either. It really hasn't done much for my crohn's, but it has done wonders for my AS & RA. Hence my suspicion it may be a reaction.

Please call your doctor and discuss this with him/her. It's important they know this. I don't see that are you on MTX? My rheumy kept me on the MTX - said it can help prevent reactions and immunity to the Remicade.

I haven't seen you on the Crohn's forum lately, perhaps a post there and on the UC board will provide more answers...

Hope you feel better soon ~S.
"My "Trifecta" - CD, AS & RA...

Co-Moderator Crohn's Forum


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 10/27/2006 5:56 AM (GMT -7)   
Thank you much El & Star!
Oh yeah, I keep my doc updated...in fact, my GI meets me on the unit & walk me in. He's aware about everything & I call em' the next day too.  He's thinking the bowel trouble could be from the Remicade. Perhaps he's seen it before?
I do take Benydryl before yes. And I am on Imuran still....so that acts as the MTX...so I don't get antibodies to the cade.
eyes  Don't know what to make of it?  I see the rheummy today...I'll pick his brain.  But I'm thinking I'm seriously immunocompromised (well, I am rather) & takin' a little beatin' the week of the infusions. My guess. WE SHALL SEE.  Haven't had bloodwork in a while (I'm bad....just haven't been compliant after a year of going every 2 weeks nono ) But need to get my butt there.
Thanx gals.  I will let you know what comes of today.
Oh & Star....thanx for letting me know about the BP. It's reassuring. But I didn't get freaked...was HAPPY TO HAVE A BP THAN NONE AT ALL! tongue
Ciao! erin
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


CaMama
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Date Joined Mar 2005
Total Posts : 1883
   Posted 10/27/2006 9:25 AM (GMT -7)   

Hi Erin,

Let us know what the doc says. When I was on Remicade my BP went down pretty low as well. The benedryl knocked me out for days - I couldn't even lift myself up. I had cut back the dosage to the absolute minimum. Did you say they give you a steroid premed as well? That is supposed to help with the reactions - I refused them at first, then when I started them I was very itchy and jittery after my infusions.

I had no problems with allergic reations at first with the exception of a small scratchy throat, itchy chest, etc (but they went away in a day), but in the end when my body started rejecting the med, my eye would swell, the cough and itchy throat got really bad, I had to switch to paper tape for the infusion site, etc.  I don't recall bowel issues, it helped my colitis and I didn't associate any issues with the infusion (doesn't mean there wasn't).

Good luck. ***

 


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 10/27/2006 10:53 AM (GMT -7)   

scool  hey ya'll,

thanx Camama for sharing!  umh...regarding the roids'...i already take em', so that i do not need as a pre-med; just the Benedryl, Tyelonol & fluids before the infusion.

well alrighty-roo, just hobbled in the door & plopped in bed from the rheummy. :-) the way i saunter is priceless after these knee injections. it looks like i'm doing a really REALLY awful dance or something....The RA Shuffle yeah

anyone watch DEADWOOD on HBO? well, ya know Jewel? yeah, that's my strut! LOL tongue in all, the appt. went well (and quick). did NOT pass out after the procedure! yea! he must be getting good at it!

he's very happy i've tolerated the Remicade. told em' about the BP, says it's common & to just be careful.  and he also said the SAME thing as my GI did...the effects i'm getting could be chemo related or...i'm picking up stuff in the hospital or on the way out; or just acquiring infections in general.

so there ya have it...like so much of everything else, it's a watch & wait ordeal.  i might get a higher dose of the Remicade next time.

so let's hope for a good night. knees aren't too bad, swollen, but not too bad. can't wait to do my PUMPKIN later! gotta think of a face for em'.

thanks guys!


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 10/27/2006 5:00 PM (GMT -7)   
erin, thinking of you...... take care. yalin

yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 10/31/2006 7:45 AM (GMT -7)   
erin was it remicade day again? how r u doing? yalin

erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 10/31/2006 11:02 AM (GMT -7)   

cool  hey thanks yalinda,

i am on Remicade holiday!  i wait till the 20th of November for my 3rd infusion.  although i wouldn't have minded to have gone monday.  i don't feel any change yet; joints are still bad & flare....but docs say the 3rd infusion should start to show some benefit. let's hope.

i did get my knees done friday @ the rheummy...walking a little better & i can bend them a little more. still at my honey's recooping'.

i guess after the 3rd round they titrate how much i need? rheummy says i'll most likey get a bigger dose the 3rd infusion.

how r u feeling?

happy halloween!


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/31/2006 11:04 AM (GMT -7)   
eyes  oh, this right side of the neck is KILLER!  guess it's still the lymph node thang.  haven't come down with a cold/flu...but feels like i'm fightin' one off...ya know that feeling?
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 11/3/2006 10:52 AM (GMT -7)   
erin.K said...
okey-doke.  just wanna know if this is the "norm" or should i be taking more aggressive action.
had 2 infusions already. blood pressure drops to about 88/50 but then slowly rises; DR.s & RNs are aware.  next day feel like the "flu"  body aches & really tired. day after that....nonstop diarrhea & it's at every time i put something in my mouth...so like it comes every 1/2 hour all day.  left sided bowel pain. GI is aware.  says, could be from Remicade...wait it out, keep to liquid diet.
also, caught a wicked infection 4 days after infusions. right side of my face/neck/glands all swollen, sneezing....a cold/flu thing. (was treated with antibiotics of course). starting to feel the SAME way again this time as well.
happen to anyone else?
just wondering?
thank you. :-)

hi erin
im new on this board i like u r so smart . i dont have any dx i have affected all my jonts all tests are negative . im so depressed . how u can explain i have all symptoms as RA but all tests r negative no inflammation no swelling no synovitis just pain  im devastated. my ankle is already deformed
i cant walk i have pain in shoulders elbows, writst, fingers already the joints affected.
hips too, knees ( started first with the right knee than all my joints) now i have 1 year and no dx no treatment im alone with my pain.the rheum clinic rejected my paper cos my test r negative. such stupid think! tell me is possible some infection can triggered my immune system i always have candida and UTI they finded enterococcus than s. agalactae is such a mess. do u think if this infection will be treated can i avoid to become positive to not get RA?
im so afraid i think i cant handle this med for RA what i read about in this board make me cry.
 
erin please answer me
ps i just graduated nurse after 4 years and now i cant  work im so sick such a fatality.
regards iris
 
 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/3/2006 11:08 AM (GMT -7)   

sad  oh iris, i am so sorry.  in nursing school we only touch a little bit on rheumatics...so what we understand & learn isn't so much.

but...if you do have an active infection, and this infection continues for a long time...the joints of the body will (or most likely will) be effected.  you may read some posts about reactive arthritis...Marius is very intelligent in this area & perhaps can supply some advice as well.

there are many peole who test NEGATIVE for rheumatory arthritis...yet they still have all of the physical symptoms. it is possible, and this is when seeing another doctor is important...maybe even 2 or 3 different rheumatologists. 

there are sooooo many different forms of inflammatory systemic arthritis.

i do think you should pursue treatment for the candida and any other bacterial infections you may have.  you may find that your joints feel better when you are on antibiotics.

so, can you go anywhere beside a clinic? or do you have access to see another rheumatologist somewhere else?

have you seen an infectious disease physician? the 2 bacteria you mention can be very serious and lead to joint, ligament and tendon inflammation if not treated in a timely manner.

what sort of medicines have you been on?

write back soon.  sincerely,

erin


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 11/3/2006 1:22 PM (GMT -7)   
hi erin
im new on this board i like u r so smart . i dont have any dx i have affected all my jonts all tests are negative . im so depressed . how u can explain i have all symptoms as RA but all tests r negative no inflammation no swelling no synovitis just pain  im devastated. my ankle is already deformed
i cant walk i have pain in shoulders elbows, writst, fingers already the joints affected.
hips too, knees ( started first with the right knee than all my joints) now i have 1 year and no dx no treatment im alone with my pain.the rheum clinic rejected my paper cos my test r negative. such stupid think! tell me is possible some infection can triggered my immune system i always have candida and UTI they finded enterococcus than s. agalactae is such a mess. do u think if this infection will be treated can i avoid to become positive to not get RA?
im so afraid i think i cant handle this med for RA what i read about in this board make me cry.
 
erin please answer me
ps i just graduated nurse after 4 years and now i cant  work im so sick such a fatality.
regards iris
 
 
Hi Iris, It's me Marius I suffer from reiter's syndrome which is a genito-urinary form of reactive arthritis. I am 25 years old male. I have it for year and a half now. Before that I have never had health issues. When I was 20 I had served in the army for 1 year, and you know, there goes only healthy people;) The term 'autoimmune disease/rheumatic disease' was only heard by me. But unfortunately nobody is ommited by these nasty diseases;( They can appear at any age gradually or suddenly. Even people living healthy life are at risk of developing rheumatic diseases. History shown many times sportsmen getting sick of RA, crohn's disease, MS or psoriasis, so the key isn't necessary a healthy living. A little is known ab out these diseases. Also every individual passes different course of rheumatic disease, and that mostly depends on his/her particular genetic makeup, some may suffer only from milds symtoms 4 life, others go into even life-time complete remission but others may suffer badly with no remissions for their entire life;( That's unfair but who said that the world is fair ;(
Well I had penis rash and itching for about one year after I passed severe infectious mononucleosis. So that what you said about the infections positively makes sense. Docs has given to me a steroid creme to apply on my penis and they always repeated that "it will go away..it will go away..." however it did not go away even more, my knee, ankle and lower back started to hurt me suddenly, started to rise fevers, eyes problems, and it was not until then that they realized that I have prostate infection after they finally performed microbiological test....Then the penis rash disappeared in 1 week after Ofloxacin + Fasygin antibiotics taken, but joint aches, eyes problems and other minor GI and urinary issues still continue to bother me until today. Yes I do have an improvement but the improvement for me comes very slowly;( Nobody has put an idea that I have RA, not only because my RF is negative but also because I have mainly 'tendons attach to the bone' pain not synovial, never had swelling and my pain is very migratory and superficial. The arthritis types that fills up these criteria are several: psoriatic arthritis (needs psoriasis), ankylosing spondilitis (needs severe constant globalized back pain), arthritis associated with inflamatory bowel disease (needs IBD) and reactive arthritis (needs a proven causative pathogen). The last type: 'reactive arthritis' means that the arthritis comes by a reaction to infection, but this does not make it non-rheumatic disease. It is also a fully blown rheumatic/AI disease. If you ask me, all types of inflamatory arthritis comes into reaction to infection. Hope the docs soon reveal this mistery. 80% of reactive arthritis sufferers carry the HLA B27 tissue antigen, which is a special human gene which predispose them to seronegative arthritis. 50% of reactive arthritis cases develops later into fully blown ankylosing spondilitis (AS) or psoriatic arthritis (PsA) and very rarely into rheumatoid arhtritis (RA). The other 50% may get cured in short or to have self-limiting mild symtoms but for long period, may be even years. That presumes that the causative infection should have been already cured. My tests have always been negative, I even have amazingly low CRP despite I may have low-grade fever meanwhile, that mostly buffles the docs in my case. When they look at my bloodworks thay say: "you are completely healthy, go home and enjoy life "... but you could understand me how healthy I do realy feel with fever and intermittent conjuctivitis flares. So now I can understand you, and everyone in this forum can understand you too. Don't listen to the docs when they say that "it's all in your head" or things like that, but continue searching the cause and the releif for your health problem (applause 4 you). I could give you what worked for me.
 
Yo said that you already have your ankle deformed?? That cannot happen if you haven't had swelling, you bet on! What do you mean deformed? Also, do you have tender 'spots' on the tendons or where the tendons attach to the bone (around the joins). That is a very distinguishing characteristic for all seronegative arthritis types. Other questions: When exactly they found you enterococcus? Have you been tested for chlamydia? Do you live in lyme disease epidemic region? Have you been with a new sexual partner when the first symptoms appeared?
 
The most interesting phenonena for me is that during the time I take antibiotics I generally get worst;(
If you are concerned about potential infections that the rehumatologist can't find you, then go to infectious diseases doc.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 11/3/2006 1:57:24 PM (GMT-7)


istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 11/3/2006 4:15 PM (GMT -7)   
hi Marius

all may tests for arthritis are negative just i took some antibiotics for UTI and i feel horrible i got candida in all my body. nobody knows what i have . the medial malleolus has a osteophyte like malleolus is calcifiated
and the lower tibia is bow and the the bone is thinner that the left tibia. i have pain when i walk on the other side on lateral malleolus. imagine and x ray is normal so is connective tissue damage i think peroneal tendon.

is not arthrosis anyway cos all my joint are affected from neck to the toes. is such a nightmare i was sporty
healthy and in 6-7 month i became disabled. is a degenerative process in joints
the right knee with right ankle are terrible. i dont know what could be. infection on tendons?
or RA in incipient stage that damege the tendons and soft tissue?
i lost 15 kg i did today colonoscopy all is ok . no chron disease. i have infection in my body but no way to cure i will go on 15 th to infecion disease dr maybe i can get some help. i lost a lot of money without result
the private are so expensive . .no way to wait 3 or 4 month for public.

hope to find the reason for my damage joint until will not to late to develop RA

i think alos i have metabolic disease cos i lost a lot of tissue on my body i have malabsorbtion
oh my god ......how could happened to me such a tragedy is such a mess in my body..

thank u for message

istone
Regular Member


Date Joined Nov 2006
Total Posts : 77
   Posted 11/3/2006 4:47 PM (GMT -7)   

 

 

hi erin

is such a mess in my body i got UTI i got candida do to the antibiotics

i got myosytis too muscles pain and damage, i lost body mass , malabsorbtion i lost 15kg im afraid to not have a terrible metabolic disease. i will see the infection disease dr  let see what will happen

all test are ok but not me . i did today scope for chron was ok.

where could be the problem ? what i have to do ? i think is soft tissue disorders and also combinated with joints damage too. they say i have osteo but couldnt be in all the joints

did u hear this osteo in all the joints? i cant rid of candida i have all over i took difulcan without any result what i have to do ? my immune system is compromised. do  have msn messenger?

 i added u on my msn are online today here is 12.45 midnight .in europe

check your email please

 

kind regards

iris

erin.K said...

sad  oh iris, i am so sorry.  in nursing school we only touch a little bit on rheumatics...so what we understand & learn isn't so much.

but...if you do have an active infection, and this infection continues for a long time...the joints of the body will (or most likely will) be effected.  you may read some posts about reactive arthritis...Marius is very intelligent in this area & perhaps can supply some advice as well.

there are many peole who test NEGATIVE for rheumatory arthritis...yet they still have all of the physical symptoms. it is possible, and this is when seeing another doctor is important...maybe even 2 or 3 different rheumatologists. 

there are sooooo many different forms of inflammatory systemic arthritis.

i do think you should pursue treatment for the candida and any other bacterial infections you may have.  you may find that your joints feel better when you are on antibiotics.

so, can you go anywhere beside a clinic? or do you have access to see another rheumatologist somewhere else?

have you seen an infectious disease physician? the 2 bacteria you mention can be very serious and lead to joint, ligament and tendon inflammation if not treated in a timely manner.

what sort of medicines have you been on?

write back soon.  sincerely,

erin


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11510
   Posted 11/8/2006 8:56 PM (GMT -7)   
Hey Erin, I see you finally started Remicade. Low BP must come with it, mine drops too, only time I ever have low BP is on Remicade day,lol. I always feel fluish after my infusion and the following day. I take Tylenol for 2 days and then its ok. I too, get the bad diarhea, whew nasty, it lasts just couple of days. I tell myself its the Remicade killing off the nasties. lol When I 1st started Remicade 4 yrs ago, I remember it was after the 3rd infusion before I could tell a difference. My infections have decreased since being on Imuran & Remicade, there is some others that say the same thing.

Was dx'd w/UC 1st of June after scope, was really sick 3 months prior, so now take Pentasa, Entocort in addition to Remicade & Imuran. Saw neurologist last week for falling alot. Having MRI Friday of brain-there is no brain left up there, he also dx'd PN in my feet from Flagyl. The falling has been very bad. Take care. Hugs, Susie


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/10/2006 10:32 PM (GMT -7)   

thank you Susie! but you know what?  this waiting 4 weeks for the 3rd round is BRUTAL!  it's really bad, too painful. i found that i am alright for about close to 2 weeks after an infusion and then it gets bad.  i mean, i've only had 2....but after the second week? all the joint symptoms cme back and BAD!  so i really hope i don't have to wait 4 weeks every time now.  don't they dictate the timing on your response?  i hope it isn't standard that i must wait 4 weeks every infusion.  it's like i'm getting worse! how often do you get yours? do you know of anyone who gets infusions frequently?  i'm just so scared that it's like a "rule" or something that there's a specific time in between each.  that or i hope it just gets better & works better.

thanks for listening. erin 


Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions; Intra-articular knee injections; Imuran; Mesalamine; Prednisone; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1883
   Posted 11/11/2006 12:03 AM (GMT -7)   
Hey Erin, don't stress yet - let the Remicade build up in your system first then see how fast your body metabolizes it.  I went to every 6-7 weeks. I know someone who did every 6-4 weeks...I think Suzie takes it pretty frequently - as do others, but don't quote me on that, she can answer for herself.
 
Hopefully, it will help for longer than 2 weeks - that's just not enough time! My veins were awful, so the infusions were getting to be hassle with every infusion after a while.

Good luck.
***
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 11/11/2006 6:18 PM (GMT -7)   

aaaaaaargh, i know i know. it's only been 2 times, what am i expecting.  but to be in the amount of joint pain & mobility problems etc...i'm P.O.'d! mad the 20th can't get here soon enough. 

i don't know how this is gonna work. for the Humira?...i was upped to every 4 days because the RA was so hard to control.

my veins are excellent. i make sure they're rotated and no one is used overly. and heck...i wouldn't mind a port if need be.  so i guess i'll see after this 3rd one huh?  but i swear, if it starts to get like this again after the 2 week mark....my mouth will be going! i just can not put up with it anymore.  i'm home...so that stinks as is...but to suffer while being a little housebound? come on! geesh. pray for the best.

yeah, i'm a bit angry. lol.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1740
   Posted 11/11/2006 7:43 PM (GMT -7)   
Erin, your description of feeling worse after the first two weeks sounds like rebound arthritis. Do you think that is what it is? Does remicade have a short half-life? I'm not sure if there's a standard for how often you take remicade, but it sounds like you may need it, at a minimum, every 4 weeks. Some people go as long as 8 weeks (or 12), I'm not sure. But jeez, if it wore off on me so soon, I'd be angry too. Doesn't seem very fair that it works for everyone else. Hang in there; I'm sure everything will get worked out.

Elcamino
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1883
   Posted 11/11/2006 8:10 PM (GMT -7)   
I feel your anger, Erin. When my body started rejecting the remicade, instead of feeling better, I was going in to hideous flares within 5 days of getting the infusion - that didn't count the literal allergic reactions I was having (swollen eyes, getting sick, hives, chest/throat issues, etc.)
 
I forgot, what other med are you taking with the Remicade? I know they prefer you take methotrexate with it.
 
****
 

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