I hurt a ton today. I am on remicade and am half way between infusions which are every 6 weeks. My joints and back hurt like bone on bone pain. It is the wierdest thing. I usually get pain in certain areas at a time but today it is in my fingers, toes, ankles, wrists, every single joint plus entire back is hurting! Any suggestions or reasons why this would be happening??:sign0085:
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Tons of pain in Joints and Remicade
- Thread starter crohnette
- Start date
If you get the magazine, Crohn's Advocate you will learn through last month's issue that you 'may' have something called Crohn's arthritis. For some reason my remicade is not working as well after a year on it and like you I have developed this aching/hurting all over. It even makes it hard to walk and climb stairs. I told GI at last visit and all he did was make my infusions at 5 weeks instead of 6. Ain't working Doc! Will discuss this more thoroughly at my next appt. By the way, my tramadol doesn't help this pain a bit.
I had the same issue. It went to a Rheumatologist and was diagnosed with crohn's arthritis. They started me on Sulfasalazine and increased my Remicade dosage from 5mg/kg to 6mg/kg. It seems to gradually be improving.
With crohn's if you have inflammation your joints hurt. With crohn's you may develop arthritis, With remicade you can have a side effect that is Lupus like symptoms that are suppose to go away after you stop remicade. Not good eh? Hope you feel better soon.
I'm on Remicade and I have joint pain, muscle fatigue and soreness. My GI told me that your body builds up antibodies to the Remicade because part of its makeup includes mice proteins (foreign). These antibodies deposit in the joints causing aches and pains. There is also something called serum sickness that can occur. My rheumatologist did a simple blood test to check for this and I came back borderline. Woudn't hurt to discuss with your doctor if symptoms persist.
I don't know if you have notice that Doctors go in and want to be out in less than two minutes. So if they tell you something you will be asking questions, so more time they have to be with you. Do your research and have your questions ready. Get your body between he or she and the door. I don't let my Doc. go out until he answers all my questions.
I am feeling the same- not on remicade, but on HUmira and 6mp- am currently weaning down off Entocort ec- which I have been on 2-3 years....Question- I have been searching the internet on this- I have Crohns. I have been on budesonide (entercort ec) for 2-3 years now. Three weeks ago my dr. started to wean me off as my Humira and 6mp seems to have put me into remission. My body has started aching in places I didnt know I had. I went down to 1 pill yesterday, and my hands are cramping and hips ache along with the long bones in my arms and legs....has this happened to anyone else withdrawing off Entocort or budesonide? I dont want to take pain meds...and cant take advil...hot bath soothes me, but not for long....will this go away?
You need to get in and see your doctor. Humira did the same thing to me as the Remicade is doing regarding joint pain, etc..
Hi barrett - not worth waiting on this. See a rheumatologist and get the simple blood test now. With many yrs of Crohn's & medication experiences, the one biggest lesson I learned was not to wait, to guess or hope it gets better. You won't regret it. All the best!:smile:
- Location
- New York, USA
Oh crap, crap, crap.....
After reading this thread, and doing a quick search - looks like I will have to talk to my doctor....so far, I have the following symptoms/issues popping up...
Sun sensitivity
joint pain - right wrist/up into arm, lower back (thought it was just my arthritis/sacroilietis acting up)
some fatigue - but that is an almost constant.....
Plus, I still have the spotty (possible) drug-induced psoriasis on my body...which see,ms to have a few new spots that have popped up....
After reading this thread, and doing a quick search - looks like I will have to talk to my doctor....so far, I have the following symptoms/issues popping up...
Sun sensitivity
joint pain - right wrist/up into arm, lower back (thought it was just my arthritis/sacroilietis acting up)
some fatigue - but that is an almost constant.....
Plus, I still have the spotty (possible) drug-induced psoriasis on my body...which see,ms to have a few new spots that have popped up....
When I went off Entacort, I got the arthritis and it never went away. I also started Pentasa.....one of them brought this on. Sounds like the Entacort. I live with it.
When I cam off the steroids, budnsole and pred I ached a lot but then had double dose of infliximab and was wonderful for 3 weeks unfortunately I had developed an allergy to it after almost one year. I then had a series of steriod injections to stop the pain while taking methotrexate injections. These are supposed to kick in after three months. In the mean while I am inconsiderable pain from Ibd arthritus.
Dx crohns sept 2010
Cancer sept 2010
Arimidex
Pentasa
Ad cal
Folic acid
Let hydroxide
Methotrexate 25 g
Dx crohns sept 2010
Cancer sept 2010
Arimidex
Pentasa
Ad cal
Folic acid
Let hydroxide
Methotrexate 25 g
Seems like these antiinflammatory meds bring on the arthritis. They say it's Crohns arthritis but if you had zero symptoms prior.....I blame the meds for activating it. I've researched -- some sciency people should look into this because I find nothing on line.
Thanks Jeffer.
- Location
- Northern California, USA
The thing to consider if you are coming off entocort and having joint pain is that the entocort has been keeping you from feeling the joint pain. It is a powerful steriod and up to 27% can be available systemically.
So you are in steroid withdrawal which can cause muscle and joint pain. And you are no longer taking a steroid which may have been suppressing the symptoms of arthritis.
And if you were on entocort for that long you need to get a DEXA scan right away if you haven't had one in a year. It's not as bad as prednisone but it can affect bone quality in a similar way.
So you are in steroid withdrawal which can cause muscle and joint pain. And you are no longer taking a steroid which may have been suppressing the symptoms of arthritis.
And if you were on entocort for that long you need to get a DEXA scan right away if you haven't had one in a year. It's not as bad as prednisone but it can affect bone quality in a similar way.
I had my second infusion last week n my right knee has been aching more and more frequently
- Location
- australia
Laurie F
i was on entocort for 5 years.
it is very hard to get off it if you have been on it for a long time, like you have.
I started to try and get off it at 2 years....it took me 3 years to get off it.
here is why.
i was taking 3 per day for years, then would go down to 2 per day for a week or two and then down to one per day....after a few days of one tablet per day i started feeling crappy in the tummy and losing appetite, so i went back up to 2 or 3 per day and started the cycle again.
after a while i was getting down to 2 per day, then one and finally going to zero per day....after 2 days of zero per day i was feeling like the crohns had come back big time!! I couldnt eat and had pain in the guts....so, naturally i went back up to 2 or 3 tablets.
this went on for a LONG TIME.
my doctor (who is brilliant) said that i was experiencing withdrawal effects and I should persist to stop taking it...he said i may feel unwell for a week or two while i got off the entocort. He was right. I got worse and worse, couldnt eat and had a gnarly headache for days......but it did go away, i started to feel a bit better after about 5 days, but had a persistant headache for 2 weeks and runny poo for about 3 or 4 weeks....all the symptoms were NORMAL for getting off it.....your body is addicted to the level or cortisol it is consuming....you body ceases to make certain hormones, this is where the problem lies....the hormones are important for digestion and other things and the long term cortisol injection has told your body to slow down the production of those hormones.....SLOWLY your body will start making them again, but you can expect to feel shitty for a few weeks......batton down the hatches and get some supprt, .
ONCE off the cortisone, god did i feel like a new man!!!!
I feel so good today.
good luck
i was on entocort for 5 years.
it is very hard to get off it if you have been on it for a long time, like you have.
I started to try and get off it at 2 years....it took me 3 years to get off it.
here is why.
i was taking 3 per day for years, then would go down to 2 per day for a week or two and then down to one per day....after a few days of one tablet per day i started feeling crappy in the tummy and losing appetite, so i went back up to 2 or 3 per day and started the cycle again.
after a while i was getting down to 2 per day, then one and finally going to zero per day....after 2 days of zero per day i was feeling like the crohns had come back big time!! I couldnt eat and had pain in the guts....so, naturally i went back up to 2 or 3 tablets.
this went on for a LONG TIME.
my doctor (who is brilliant) said that i was experiencing withdrawal effects and I should persist to stop taking it...he said i may feel unwell for a week or two while i got off the entocort. He was right. I got worse and worse, couldnt eat and had a gnarly headache for days......but it did go away, i started to feel a bit better after about 5 days, but had a persistant headache for 2 weeks and runny poo for about 3 or 4 weeks....all the symptoms were NORMAL for getting off it.....your body is addicted to the level or cortisol it is consuming....you body ceases to make certain hormones, this is where the problem lies....the hormones are important for digestion and other things and the long term cortisol injection has told your body to slow down the production of those hormones.....SLOWLY your body will start making them again, but you can expect to feel shitty for a few weeks......batton down the hatches and get some supprt, .
ONCE off the cortisone, god did i feel like a new man!!!!
I feel so good today.
good luck