I’m making the switch from Remicade to Humira for my crohn’s disease.
The muscle aches, which we attributed to an allergic reaction to Remicade, went away mostly. However, after my 3rd Remicade treatment, the achey joints returned (maybe some slight muscle pain, but mostly just joints). It was my elbows, fingers and wrists, ankles and knees. For the most part, after about 5 weeks, all that remains of the aches are one elbow and both knees – consistently anyway.
Doctor today seemed like he was thinking about suggesting another round of Remicade… but then just said, lets just do Humira, I think that’s what we should do… Are you ok with it? Oh, yes. Definitely ok with it. I certainly don’t want to feel these aches and pains… not feeling confident to carry laundry up from the basement for fear my knees will give out.. or carrying a couple bags of groceries makes my arms feel like they’ll fall off.. while I am happy to not have the abdominal pain, I didn’t plan to trade it for other pain.
The tail bone pain I was feeling before the holidays is completely gone. I actually wouldn’t have given it any thought, except he asked about it today. So, I’m assuming the abscess was small and insignificant enough it just went away.
So, humira. I will go to the doctors office and a nurse will show me how to do it.. from then, I will adminster the shots myself at home. They assured me it’s easy to do – but I also don’t want to mess it up, as it’s so expensive. No pressure. But really, I think giving myself a shot will be a cake walk compared to going and sitting for hours at the hospital while they give me an iv of remicade.. yeah, I really don’t mind the switch.
Now, keeping fingers crossed Doc can push the change through my insurance.
{ 10 comments… read them below or add one }
It has been awhile since you’ve posted and I’ve just been told by my doc that i should go on Humira. Read about it and I am not ready. Prednisone works for me when I have flare ups, really bad flare ups.
Sadly my doctor has no interest in prescribing me pain meds like yours has. What is he thinking? Right now I am having a serious flare up and am miserable… I asked my husband yesterday why he doesn’t prescribe me pain meds….he will only prescribe the steroids.
I tell him my typical day when I have flare ups: I get a cramp, need to ball up so I stop what I do, squat on the floor, crumple to a ball and my family kind of goes about their business and walks over me after asking if they can help me. I get 40 -100 a day when it’s bad.
Pain. I experience it.
@joanna: I usually just feel crampy constantly. It will wake me from sleep.. makes it hard to concentrate on much of anything.
Sorry about your doctor. My family doctor prescribes the pain medication, my GI doc does the other crohn’s stuff.. but both are in contact with what I am doing, what I take, etc. It was weird realizing I would now have a “team” of doctors I would work with forever.. But anyway.. maybe a family doctor? Or document the pain? No one should have to live with pain.
i so agree. No one should have to live with pain. I was on Humira for about a year and it did it’s job. But I am so worried about long term side effects… So, two years after taking nothing for this wonderful disease ( sarcasm here) I am in the midsts of a flare up. I called my doc after two years, and will go see her thursday to 1) get yelled at for being an awful patient and 2) start a course of pred. But Pred is all. I am done forever with Imuran, Entocort, Pentasa, Remicade and Humira. For 11 years I have been saddled with this disease and for the rest of my life, I will know the capabilities of it’s wrath, but I am done poisoning my body for years on end with immunesuppressers and steroids. One 3 month course of prednisone every two years isn’t too bad of a price to pay to stay away from all those other drugs
I hope you are feeling better!
For me, personally, I’d rather take humira regularly, than to do even one month of prednisone – I hated that stuff. And yeah, I have the same concerns as you about the poisons in the other drugs… but I also want to live life, enjoy my kids. I was soooo sick for 3 years, I just don’t want to go back to that at all. I hope that in the future, I’ll feel confident enough to get off the humira too, but until then, I turn a blind eye to the “what ifs” and take the meds, the pain meds, the antidepressants… I’m not missing more of my kids (or new grandbaby!) due to this disease.
My 23 year-old son has Crohn’s Disease. He had a MAJOR reaction to the Remicade he was on for 9 years. His skin was falling off on his hands, knees, feet, and head (hair fell out in patches). He’s been in the hospital since Sept. 1st. The GI doctor wants to try either Humira or Simseo (sp?). What kind of side effects are expected for either one?
i was diagnosed with chrons in 99 and had a resection that year. was put on remicaide and stopped then tried to start….not good, had an allergic reaction all three times they made me go back to try…so they put me on humira in 06 or early 07. had another resection on Oct. 07. the doctors were unsure about whether or not they wanted to do it but i had had enough and they said it was my choice and i opted to get it done. the pain was horrible i was flaring up constantly…so at this point i have about seven feet of my lower bowel cut out. during the 07 surgery, doctors reported to me that they were glad they went ahead with the surgery due to the absesses they found, my intestines were tangled together somehow (maybe from first surgery, i dunno)…anywho i have been doing very well with the chrons since my last surgery…i know surgery is rough, belive me the first one was a breeze compared to the second one but it was totally worth it to not feel like complete POO all the time. My only concern is i have been having some joint pain for the past two years, (been on humira for over 4 yrs about) the pain, swelling and stiffness is becoming more prevalent. sometimes its in my fingers, wrists , feet, knees and even my back. at times it doesnt last longer than a few days but i am now starting to chart it so i can take it to the doc. I was hoping i could hear from someone who may be having the same issues with joint pain/arthritis? i have heard about this Simseo but i dont want to really start anything new but if the humira is causing all of the joint pain, i really dont think i can continue for much longer…any help is appreciate
I really wish my doctor would switch me to Humira. However I have the been responding well and I supposed the time spent in the hospital is worth feeling better. Hope everything works out.
hi to all
i hope all crohn’s patients will be better and remains at total remission with out any flare ups …
actually i read recently a study comparing switching from remicade to humira and the opposite . the study called SWITCH and it’s so recent (10.2011 / GUT)…. the results were amazing for remicade over humira at three points:
1. loss of response ….leads to drug termination.
(47% (17/36) ADA patients required dose adjustments for LOR or stopped therapy for complete LOR or intolerance vs. 16% (6/37) IFX patients
2. loss of tolerance.
3. adverse effects.
so for any remicade patient … stay on it and don’t switch
also you can switch from humira to remicade fot better response
@ Sam — This is interesting – But do remember that all medications don’t work for all of the people using it. There IS a chance of allergic reaction to Humira AND to Remicade, regardless of what order you take it, or if you go back and forth. I have had adverse reactions to both drugs and don’t feel either one work for me – though humira did get my crohns into remission, that doesn’t change the fact that I was having intolerable side effects. Remicade was absolutely horrible for me. Within 2 treatments, I felt like a 40 year old in a 70+ year old body… I couldn’t walk up or down the steps, I could barely get up from a sitting position. Every single major joint in my body was in screaming pain – including the joints in my fingers. And this was directly related to Remicade. It took over 6 months for these side-effects to go away enough that I felt more normal and more than 3 years later, I still have pain in my knees from it when going up steps.
For you to say to stay on it, when you don’t know each persons response to it isn’t fair or wise.
I’d be interested to read the study you read – but can’t seem to find anything on the internet about it – except for a study called RESTART and refers to rheumatoid arthritis.
I have UC since 2001. Prednisone did not work for me. Not to mention the side effects. I have been on Remacide for a long time and have bad muscle and joint pain. Lupus like sydrome.
The doctor mentioned to try Humira. So that’s the coarse for me now. I hope I can work and live without the pain. I almost feel crippled. Along with depression and feeling 90 years old. Hope that all changes.