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Crohn's and joint pain?

I am 29 recently diagnosed with crohns and colitis about 2 months ago. 6 months ago I stated having bad stomach pains, constant restroom usuage, bleeding, joint pain and swelling, lost 40 pounds in a few months, and lots of fatigue. my doctor started me out on 40mg of prednisone and on lialda. sinsce starting the medication I have been alot better. occasional bleeding, some fevers but mostly normal. the problem im having is extreme pain and swelling in my knees and hips. the doctor said I should try humira or remicade. would it be smart to see a dr who deals with things like arthritis first? Before 6 months ago I never had a problem. I have figured out some trigger foods. been lurking and thought I would join.
 
Welcome to the forum. It will be a good Idea to schedule a visit to a rheumatologist. For some, crohn's and joint pain goes hand to hand. Symptoms can disappear once your crohn's is on remission or stay regardless of crohn's activity. Remicade and Humira are also used for arthritis. Sending support your way.
 

David

Co-Founder
Location
Naples, Florida
Welcome to the community. Out of curiosity, is your Crohn's disease in your small intestine, large intestine, or both?

Are you off the prednisone yet?
 

David

Co-Founder
Location
Naples, Florida
I asked because Lialda targets inflammation in the colon. If you also have inflammation in the small intestine, it probably isn't going to do much there and you'd want to utilize other treatment options as well.
 
Thanks thats what I thought. dont know a whole lot about this disease or medication as ive only been diagnosed for 2 or 3 months. im trying to research as much as possible and get mine under control. have had to quit some foods and drinks and what not. its wierd 29 yrs and no problems then one day i got sick and lossing weight. Doctor said ive had it for some time I just never flared. guess thats life and I learn as I go. thanks for all the responses.
 
Been sick the last few days. went to work sunday and had a bad day where nothing ran right and had a lot of manual labor involved. got sick at work and had to call in last night due to not feeling any better, stomach and bathroom issues along with extreme joint pain. boss wants me to take a break from work so I have another doctors appointment set up to get it approved. this disease sucks.
 
Sorry to hear you're still feeling this bad. Is the doctors appointment to get approval for Humira or Remicade? Hope your new treatment brings you relief.
 
Dr appt is to get approved to take an extended leave from work. dr wants me off prednisone before starting humira or remicade. I got around 6 or 7 wks left of prednisone tappering.
 
I'm not diagnosed yet, but I too have bad joint pain, and have had it for years. Mine seems to come on if I'm cold/sitting in a draft/it's about to rain. Some doctors claim it's because I have hyperflexible joints, some say it could be related to whatever is going on with my gut.
 
It seems unusual that your doctor wants you off pred before starting Remicade or Humira. Normally the concern is to get the new medication to therapeutic levels before you are off pred.

Did your doctor explain their reasoning for that in any more detail?
 
It seems unusual that your doctor wants you off pred before starting Remicade or Humira. Normally the concern is to get the new medication to therapeutic levels before you are off pred.

Did your doctor explain their reasoning for that in any more detail?
The concern is the level of immunosuppression. Being on both can be too immunosuppressive.
 
Makes since drcrohns. he didnt explain why but has years experience dealing with crohns and colitis. I just told him how I was doing and he said I needed a stronger med and how we would go about doing it. he has answered every question and has no problem sitting there explaining things to me. still dont know what questions to ask sometimes.
 
Gi doctors nurse called today and they are going ahead and putting out a prescription for humira and and get back to me for a sooner appointment. still seeing my primary doctor tomorrow. but figured id give an update. hopefully the humira will work.
 
I realise the idea that taking two immunusuppressants at one time being too much may on the face of it make some sense but in reality this is usually not a problem with these combinations.

And the highly desirable effect of starting humira before you come off pred would be that pred bridges the gap before the Humira starts working.

Do ask if you will do loading doses of Humira to get it working faster too and how the levels will be monitored to see if you need to increase the frequency from the normal fortnightly injection, to every 10 days or weekly as some people require.

Hope you feel better soon
 
I have been writing down questions to ask such as those and what reactions do I need to call right away and what ones to just schedule an appointment for. How often I need blood work and some others.
 
Went to get my humira last night. was told my insurance would not release it due to it being a specialty med and would need to go to a specialty pharmacy. called them and they said it would have to be mailed even with the pharmacy that I use having it. anyone else have this happen?
 
Went to get my humira last night. was told my insurance would not release it due to it being a specialty med and would need to go to a specialty pharmacy. called them and they said it would have to be mailed even with the pharmacy that I use having it. anyone else have this happen?

My Cimzia is mailed to me from a specialty pharmacy for the same reason.
 
That is standard
Specialty pharmacy mails DS humira to our door . You have to call back every so many days to get them to ship the next box .
For DS that is every 20 days ( since he takes if every ten ) standard dose every 28 days for shots every 14 days
Make sure to signup for my humira card they cover most of your copay which will be high .
I agree with the pred to bridge the gap.
Humira takes 3-5 months to become fully effective .
Good luck
 
Did 1 shot in each thigh and 1 on each side of my stomach. the first shot wasnt bad, 2 & 3 had a small burn, the 4th one I felt alot. overall it wasnt to bad. no bruising or swelling yet.
 
Took my second dose on 7-2. Saw Doc yesterday and was almost tapered off prednisone. Due to still bleeding and going 4 to 6 times a day i now have to do 10 mg pred for a month then 5 mg for a month. I see him again in 2 months and he said if im not significantly better i will also begin 6mp with the humira. I was looking forward to no pred but i guess thats how it goes.
 
Yeah Ds was to only do a short burst of pred for 4 days
That was three months ago
Still try to wean off
His was due to arthritis flaring not ibd
 
Figured i would update this. Off prednisone as of today and still taking humira every other week. My weight has been in the 170 to 175lb range. Seen doctor last wednessday and i dont have to go on 6mp due to my stomach issues doing better. There not great yet but alot better then where i was. Joint pain is still not getting any better yet but see a rhuemotologist in 2 wks. Lately just been trying to keep up at work and been dealing with depression. Its has been hard re adjusting. Lifes just not the same but i know it will get better. Thankfully i got good support from my family and doctor.
 
I tapered down to 5 mg and stayed there for 1 month. Seen the rhuematologist today. Said crohns arthritist. Will be starting azathioprine. Hopefully it helps my joints, its hard to get around somedays. Other days its painful but manageable. Told it could be 3 months before it fully kicks in. Lab draws monthly to monitor.
 

my little penguin

Moderator
Staff member
Hope it helps
DS has arthritis as well and they added mtx to the humira
Physical therapy ( swimming ) helps tremendously for arthritis
As well as stretching daily - electric blankets
Volteran gel ( NSAID but only on the skin so it avoids Gi tract )
Lots of hot packs

Good luck
 
Went to the E R last night. First time full dose of aza and an hour later got dizzy, faint feeling and vomiting. Stayed dizzy and faint feel8ng for abo7t an ho7r before i went. Called doctor today to see what he wants to do. As of now im not taking it. Dont know if ill stay at the dose i had no problems or need to stop it altogether. Today ive had a headache.
 
Dr called. I am to stay at dose i was in until saturday then try to up it by a half pill for 1 week then go full dose. If a problem occurs again a new med will be prescibed.
 
Got called today. Dr looked at my labs and said i need to get another colonoscopy done the 17th. He believes i may be rejecting the humira, or i may not be responsing well to it. I was thinking i was doing ok. My symptoms are not where they were but not great either guess ill find out the 17th what will happen.
 
Doctor said my insides are looking better and humira us working just not as well as hoped. He believes my current problems are from the aza. He did a humira antibody test to be sure andbin 5 days ill get the results. For now him and another doc will study my charts and come up with another med for my arthritis.
 
I asked because Lialda targets inflammation in the colon. If you also have inflammation in the small intestine, it probably isn't going to do much there and you'd want to utilize other treatment options as well.
Thanks, David,for that information. I was put on Lialda and now I know it is for the Crohn's Colitiy.☺
 
I also forgot to say how glad i am to have a great wife. Ive recently gotten rid of some of my hobbies due to my arthritis (motor cycle). My wife know how much i enjoy hunting but lately i couldnt use my bow due to strenth so she told me to buy a crossbow. It reminded me that even with my limitations i can still do something just differently.
 

my little penguin

Moderator
Staff member
Have you tried adding mtx ?
That helps a lot of arthritis related crohns
Physically therapy - warm water pools - swimming
Volteran gel for joints
And have you seen a Rheumo
They handle it better than a Gi
 
Woke up legs were cramping and knees and hips hurting. Called my gi as we had talked the 17th about the possibility of taking more time off. I am waiting to hear back from him. I have let him know how i am struggling to work due to the pain and said.i would like some time to try a new medication and get better. If he agrees i will call work and begin the process to take some time off again. I dont know how much longer i can keep my job wirking like i am.
 
Updates are since the 11/17/15 colonoscopy showed alot less inflimation my gi said to talk to the rhuemotologist about taking leave. Talked to rheumo and primary doc and set up an appointment. I stoped taking azathiroprine and have started folic acid and methotrexate. My gi and rhuemo are trying to switch from humira to remicade to help my joints. My joints hurt so bad im barely able to get work done. Seen my primary dr today and was told he would see about prednisone againe but since its side effects arent good and starting new meds it may just mask symptoms etc. Said he would offer 2 wks off but 2wks wont do nothing until i get a fews infusions going. So ill just continue to rid this out and see how long i can keep my job. Ive had joint pain for atleast 7 months and cant take it anymore and i hear well your intestines look better so blah balahh blah. If i loose my job i just have to do what i can till i find another with insurance. Probably wont be taking any meds as i wont beable to afford them but it is what it is i guess.
 

my little penguin

Moderator
Staff member
Will the Rheumo fill out fmla for you ???

Remicade will take anywhere from first infusion to 6 weeks to work
Mtx 8-12 weeks to work

Did they ok tramadol or volteran gel ?

Pred for two weeks would get you at least two infusions in which you may get lucky and work after the first infusion

It would at least make it easier for the remicade to take over
Less inflammation in the joints to knock down

What did the Rheumo say about pred?

Ds 's has him always have pred on hand to stop things before they get out of control
 
Im suppose to hear back today from the primary and the rhemo about presnisone. See rhuemo again in Janurary. Never heard of either of those gels. If the rhuemo calls todays i will talk to her again but with only seeing her once i dont know what she would say about leave. I think im stuck riding this out. I really dont see me lasting much longer. Where i live there isnt many good jobs either so ill just continue to pray for the best and hope a miracle happens.
 

my little penguin

Moderator
Staff member
Both are prescription meds
Voltaren is great since you just place it directly on the joint
Tramadol can make it harder to think etc
Only gave it to my son once since he is only 11
 
Primary called back and wants to do 20mg pred for a week if i feel better then start taper on week 2. If not feeling better go to 40mg. Its a joke. Pred did nothing and i took 40mg for along time.it drives me nuts i know healthy people who admit to being lazy get disability people taking pills from dr who just toss them out and sick people in pain get treatment that didnt work represcribed to to them instead of rest until meds needed get started. If i loose my job they wont hear the end om me saying i told you so. Sill no call from rheumo about approval for remicade.
 
Multiple people have told me to. I like working, i cant stand being home for to long.. If i didnt have so many stairs at work i would be ok. I do decent until i have to climb, unfortnately there is no way around that at my job. On slow days i get around ok. I still have alot of pain but stairs kill me. Rhuemo called after 2 days and said they didnt get my fax for remistart. Took 2 days to answer if they did or didnt. Told them i would re fax it. 10 minutes later they found it in a pile of papers.
 
How frustrating for you. I relate to so much. It's hard enough dealing with being sick, but all the hoops we then have to jump through-phone calls, paper work, Dr appts, waiting and waiting...and the financial stress...I've been going through it all too. Big hugs to you.
 
How frustrating for you. I relate to so much. It's hard enough dealing with being sick, but all the hoops we then have to jump through-phone calls, paper work, Dr appts, waiting and waiting...and the financial stress...I've been going through it all too. Big hugs to you.
Amen.
 
Sorry my man, I feel for u. Really I do. Sounds kinda shitty that ur GI hasnt just stepped in to request the remicade. I have been told that they prefer remicade over humira for crohn's as well because of some bs that i couldnt regurgitate properly. But I like you love to work, and I have zero juoce lately. And I am fearful that Iay have R.A. as I have been having absolutely excrutiating joint pain, its symmetrical and especially bad in my hands, feet, knees, and hips. Fucking scared me. Pain meds help my whole body relax enough where I can function, and even then, i am fucking practically bedridden. I really hope things turn out for u. Fingers crossed. Gotta be a thorn in the side of docs unfortunately. Sux, cuz thats so not how I am. Stay strong bud.
 
Grats buddy. My doc is changing me to humira on the 22nd i think. Not sure. My joint pain has been so bad lately it keeps me up at night, and it wakes me up in the middle of the night. Hope the remicade helps you out. Wishing you well.
 
Advice on humira is leave it out 30 minutes. It burns less. I went right then left stomach and right then left thigh. Burn lasted about 10 seconds and i was tired a few hours later. Hope it works for you.
 
I have tried the humira before, it was not all that bad in terms of the burn. We had to do my thighs as I was honestly a skeleton with muscles hanging off the bone. I was so scared because I honestly looked very much like a haulocast victim, and I mean no disrespect with that statement. But it is exactly what i resembled. Hope the humira works this time round
 
I dropped from 155lbs to 118lbs when i first was diagnosedback in 2011. After surgery couple months ago, i went down to 101lbs. 1 am at 130lbs right now. I just dont know what to think.
 
The weightloss is scary. I'm 5'5 and petite anyhow, but I've lost 40lbs since June. Gained a couple back but lost an an additional 5lbs this past 2 weeks thanks to a rough patch.
 
Update. Took my 1st dose of remicade. Blew a vien initialy, 2nd vien worked. No reaction and didnt feel tired after infusion. Ended up not going to the bathroom all day yesterday, which is not normal. No problems today and all seems normal.
 
The weightloss is scary. I'm 5'5 and petite anyhow, but I've lost 40lbs since June. Gained a couple back but lost an an additional 5lbs this past 2 weeks thanks to a rough patch.
The weight loss is scary, I got quite ill when I was first diagnosed and lost about 2.5st in a few weeks (and I'm a pretty skinny guy as it is) took me a while to put it back on, and I'm not quite there yet, but with a good diet you can stabilise and stay at a healthy weight! don't let it get to you, just focus on the good days and write off the bad ones! :)
 
The weight loss is scary, I got quite ill when I was first diagnosed and lost about 2.5st in a few weeks (and I'm a pretty skinny guy as it is) took me a while to put it back on, and I'm not quite there yet, but with a good diet you can stabilise and stay at a healthy weight! don't let it get to you, just focus on the good days and write off the bad ones! :)
Amen
 
Unfortunately for me, no diet can allow for mento put on weight, as my disease seems more severe than in other peoples experience, as I dropped 35-40lbs in like 4 months back in 2011, and that is 25% of my overall body weight wich is just as unhealthy as gaining a bunch of weight that quickly. But no matter what I ate, over the past 5 yrs, nothing has allowed me to gain weight, and in fact i had gotten a cold at one point over those 5 yrs and dropped down to 109lbs, even now, after my surgery removed the "active" disease, my body seems to plateau at 130lbs. Surprises me too, cuz I am eating but mayne once a day.
 
Greeting my good man :D

Crohns is truly an abundant force of nature, its energy resonates the body over. Such energy that gives rise to the joint pain and swelling is perhaps a little less attended to given the number of issues which arise with Crohns.

It feels perhaps you have found opportunity to manage this issue from the off-set. The weakening of the joints is resultant from a number of factors however, the key is within the Lymphatic system. The Lymphatic primary purpose is to transport lymph clearing waste however, it also directly connects the brain and immune system.

I would humbly suggest to consider self-referring to consult a physiotherapist in order to pick a few basic exercises you can follow. Swimming is a wondrous exercise which eliminates further decline of the joints through impact but gives them a wondrous workout - plus submerging the joints in water has wondrous healing properties. A circulation booster such as the Revitive IX - these products are marketed for the elderly, however I can't recommend this enough.. :) Finally, Thai Chi warm-up stretches will be a God send :)

Peace & Love Always


Nicholas
 
Greeting my good man :D

Crohns is truly an abundant force of nature, its energy resonates the body over. Such energy that gives rise to the joint pain and swelling is perhaps a little less attended to given the number of issues which arise with Crohns.

It feels perhaps you have found opportunity to manage this issue from the off-set. The weakening of the joints is resultant from a number of factors however, the key is within the Lymphatic system. The Lymphatic primary purpose is to transport lymph clearing waste however, it also directly connects the brain and immune system.

I would humbly suggest to consider self-referring to consult a physiotherapist in order to pick a few basic exercises you can follow. Swimming is a wondrous exercise which eliminates further decline of the joints through impact but gives them a wondrous workout - plus submerging the joints in water has wondrous healing properties. A circulation booster such as the Revitive IX - these products are marketed for the elderly, however I can't recommend this enough.. :) Finally, Thai Chi warm-up stretches will be a God send :)

Peace & Love Always


Nicholas
 
Days off im usually feet 1 or 2, hips 5 knees 5. Work days feet 3 or 4, hips and knees average day 6 can hit 8 or 9.
Work is so tough when the joints aren't cooperating. My knees don't often bug me but my hips and shoulders, hands and ankles can reach 8-9 most days. Today my hips are screaming.
 
Even though prednisone is an anti-inflammatory I have had severe ache in my joints every time I was on it. Doc said it was unusual but not unheard of.
 
Even though prednisone is an anti-inflammatory I have had severe ache in my joints every time I was on it. Doc said it was unusual but not unheard of.
Yah, my experience as well. Predinsone doesn't seem to work for me. Which is fine...it's nasty stuff. I'm almost done my course of it.
 
Hope things turn out good for you mustang. At least you have put on weight. I have a lot on my mind regarding all of this, but i think its proper I just start a new thread of my own so I don't end up hijacking yours. What I will say, is that when I actually do fall into a deep sleep, it is usually interrupted by awaking to hip/joint pain and/or the need to use the restroom. This almost feels like groundhog day, like the nightnare that just keeps repeating itself day after day. Hope that things continue to work out well for you and all your treatments. Take care.
 
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