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Crohn's Disease Forum » Your Story » Crohn's and joint pain?


 
05-15-2015, 02:41 AM   #1
2010mustang
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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.
05-15-2015, 09:28 AM   #2
araceli
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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.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
05-15-2015, 03:32 PM   #3
David
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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?
05-15-2015, 05:18 PM   #4
2010mustang
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It is throughout my intestines but mainly the colon area. I am still tapering off the prednisone.
05-15-2015, 06:16 PM   #5
David
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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.
05-15-2015, 11:58 PM   #6
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I'm new to this forum. How do I edit my signature?
05-17-2015, 05:16 PM   #7
2010mustang
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Shouldn't the prednisone take care of most the inflammation?
05-17-2015, 05:48 PM   #8
David
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While you're on it, yes, it should. But once you taper off, the inflammation tends to come back.
05-18-2015, 03:46 AM   #9
2010mustang
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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.
05-18-2015, 06:35 AM   #10
24601
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@kingandsyd Welcome to the forum! You can edit your signature by clicking on "settings" in the navigation bar or going here http://www.crohnsforum.com/usercp.php

Please do post your story in the "Your Story" section of the forum so that we can give you a proper welcome

Look forward to "meeting" you properly!
05-19-2015, 04:27 PM   #11
2010mustang
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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.
05-19-2015, 04:44 PM   #12
24601
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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.
05-19-2015, 06:55 PM   #13
2010mustang
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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.
05-19-2015, 07:37 PM   #14
Izzie
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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.
05-19-2015, 08:33 PM   #15
24601
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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?
05-19-2015, 10:10 PM   #16
DrCrohns
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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.
05-19-2015, 11:56 PM   #17
2010mustang
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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.
05-20-2015, 06:06 PM   #18
2010mustang
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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.
05-21-2015, 12:10 PM   #19
2010mustang
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Off work for the next 8 weeks then get check again. hopefully this will allow my body to rest some.
05-21-2015, 12:24 PM   #20
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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
05-21-2015, 01:52 PM   #21
2010mustang
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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.
05-29-2015, 01:28 PM   #22
2010mustang
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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?
05-29-2015, 05:30 PM   #23
SCCrohnie
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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.
05-29-2015, 06:16 PM   #24
Mr chicken
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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
05-29-2015, 06:47 PM   #25
2010mustang
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They wont accept the humira card I got one from my dr but they refused.
06-16-2015, 01:34 PM   #26
2010mustang
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After dealing with the insurance and needing more lab work I finally strt my humira treatments tomorrow
06-17-2015, 09:41 PM   #27
2010mustang
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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.
06-17-2015, 09:45 PM   #28
Mr chicken
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DS has been on it for 2.5 years
I inject the syringe for him
Only bruising a small amount a few times
Good luck
07-10-2015, 02:03 PM   #29
2010mustang
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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.
07-11-2015, 10:43 PM   #30
Mr chicken
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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
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