extreme joint pain....humira?thyroid?vitD deficieny, crohn's?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 5:08 AM (GMT -7)   
I posted this on another site...perhaps someone here has some suggestions as well...I started humira 3 weeks ago and from what I can see, it is definitely helping me...I am now off cipro and have decreased my entocort to 6mg and will be going to 3 on monday...thats the good news...prior to humira, I was getting joint/inflammation pain in my knees....didn't know if it was crohn's related or thyroid related...thryroid has been out of control, every two weeks fluctuating from normal, to high, to low...clearly having problems absorbing...since the start of the humira, a week after the loading dose I started having extreme joint pain in my hips,knees,ankles, wrists, shoulders and back...I was also starting to have increased neuropathy symptoms...the neuropathy symptoms in my arm and feet have now gone away...I really think it was related to my thyroid as it can cause carpal tunnel and tarsal (spelling?) tunnel syndrome...either way its gone and not a problem...have an appt. with my neurologist next week just to be safe...so now, while the crohn's and pouchitis are quiet, I am dying in pain with the aches and joint problems...I have a rheumatology appt. set up for a week from monday...not sure if this is related to the humira, crohn's, thryoid problems or now vitamin D deficit...vitamin D quite low as a result of the thyroid problems or ?crohn's...my doc did labs (ANA,rheumatoid factors,etc) on me to check to see if this was humira induced lupus but everything came back normal...hell, even my sed rate and white cell count was normal, something it hasn't been in a long time!!!....I am at wits end...I'm in so much pain (to the point of nausea at times) and there is nothing I can take for it...can't take nsaids due to the pouch/crohn's...tylenol does nothing...GI wants the rheumatologist to treat it...any ideas as to what this pain is from?...could it be the humira?...if it was humira, wouldn't I have some relief towards the end of the two weeks, right before I take my next shot....I'm tired of this...I'm still working full time but barely hanging on...I work and come home and thats it...have no energy to do anything else...feel bad for my husband who has to put up with me....sorry for the long post...I tend to ramble...
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 500mg 2x's daily cipro, 800mg xifaxin, 9mg entocort, Humira (started 3/23/09), synthroid
 


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/16/2009 7:49 AM (GMT -7)   
Goldy, I dont know about Thyroid, but crohns does attack joints and I am proof of that. Remicade is the reason I can walk or do much at all. You dont say what you do at work, but if you are on your feet all day, that will not help. Also there is lots of stress in your post and stress is a bad thing for crohns people. Hope your apt. with the neuroligist helps you. Keep us up to date..
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/16/2009 7:54 AM (GMT -7)   
goldy3 said...
I posted this on another site...perhaps someone here has some suggestions as well...I started humira 3 weeks ago and from what I can see, it is definitely helping me...I am now off cipro and have decreased my entocort to 6mg and will be going to 3 on monday...thats the good news...prior to humira, I was getting joint/inflammation pain in my knees....didn't know if it was crohn's related or thyroid related...thryroid has been out of control, every two weeks fluctuating from normal, to high, to low...clearly having problems absorbing...since the start of the humira, a week after the loading dose I started having extreme joint pain in my hips,knees,ankles, wrists, shoulders and back...I was also starting to have increased neuropathy symptoms...the neuropathy symptoms in my arm and feet have now gone away...I really think it was related to my thyroid as it can cause carpal tunnel and tarsal (spelling?) tunnel syndrome...either way its gone and not a problem...have an appt. with my neurologist next week just to be safe...so now, while the crohn's and pouchitis are quiet, I am dying in pain with the aches and joint problems...I have a rheumatology appt. set up for a week from monday...not sure if this is related to the humira, crohn's, thryoid problems or now vitamin D deficit...vitamin D quite low as a result of the thyroid problems or ?crohn's...my doc did labs (ANA,rheumatoid factors,etc) on me to check to see if this was humira induced lupus but everything came back normal...hell, even my sed rate and white cell count was normal, something it hasn't been in a long time!!!....I am at wits end...I'm in so much pain (to the point of nausea at times) and there is nothing I can take for it...can't take nsaids due to the pouch/crohn's...tylenol does nothing...GI wants the rheumatologist to treat it...any ideas as to what this pain is from?...could it be the humira?...if it was humira, wouldn't I have some relief towards the end of the two weeks, right before I take my next shot....I'm tired of this...I'm still working full time but barely hanging on...I work and come home and thats it...have no energy to do anything else...feel bad for my husband who has to put up with me....sorry for the long post...I tend to ramble...

smilewinkgrin Hi Goldy3 were you dignosed with arthritis due to your crohns disease most patients have joint problems one of the perks of crohns i guess i have athritis in my both knees,hands,lower back,and right hip since 15 years due to all the steriod use steriods thins the bones also, i'm not sure about a reaction from the Humira i'm on that to and find it doesn't help with the bone pain considering most of these drugs were brought out to help arthritis i don't find they did a thing for my bones.The weather is a big thing for me i know when it is going to rain by the swelling of my joints and the redness and pain,i live in Nova Scotia the weather is always damp here we really only have 2 seasons left now winter and a chilly summer,fall so its not a great place to live if you have joint pain.Do you take calicum and vitamin-C or vitamin-B-12 and are you on anything for your joint pain now like celebrex or fosamax,i take fosamax once a week really its just calicum i don't know if its helping me alot or not but i take it in case its doing something for me.Humira has a long list of side effects,but have you contacted them and expressed your concerns with them they are really helpfull i call them before callling my GI or my GP and see what they have to say the number is 1-866-848-6472 call them and see what they have to say or even try your drug store they can also be very helpfull?The only real problem i have experienced with the Humira was extreme itching for over a week and large welts at the site of the injection,i have only been on Humira now for 3 months so i haven't formed any opinions on it yet? I have tried Remicade and Methotraxate and didn't have any success with either one so i'm hoping this is the right drug for me,my problem now is i keep on having repeated bowel obstructions and i don't have enough bowel left to operate i just got out of the hospital a week ago i won't take steriods any more not at all when i'm on an any immune drugs cause it increases your risk of getting infection. Its great that your white count if normal i can't remember when mine was last? Anyway i hope that helped you a little bite,i'm sure when you got to the bone doc you will get some releif i'll pray you do there is nothing worse that the steady ache of bones i describe it to the doctors by saying it feels like a dog is chewing on my bones to me that is how it feels,somedays the pain in my joints is that bad i can't get up from bed,so i joined the gym the doctor told me that it would help my bones alot keeping them moving it does help the bikes are great i find a huge differance since i started working out and an another thing after wards i got so much energy its on real. I do a half hour of cardio and a half hour of weight training you should try it see if it helps you but make sure its okay with your doctor first. Your Friend Jenn tongue

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 12:21 PM (GMT -7)   

Thanks sniper and Jenn for your replies...

Sniper: I'm a medical social worker...specifically, I work with dialysis patients (helping them deal with their illness!) and at a nursing home...I'm on my feet a lot but have the opportunity to sit as much as I want...your right, Im quite stressed and realize how bad it is for IBD...In regards to humira and remicade, as you pointed out, it should be helping with my pain and instead it made it worse...not sure what is going on here...

Jenn: I have not been diagnosed with arthritis due to crohn's...I have an appt. next week with a rheumatologist to hopefully help me figure this all out...I can say that I have always had a colitis induced arthritis but it was never this severe...in regards to calcium...I am not taking anthing and I realize this is a problem...my endo has not allowed me to as my TSH has been going haywire for the past year and calcium would effect the absorbtion...given that I now have a vitD deficiency, I'm sure that is going to change now...I'm thinking/hoping that my absorbtion issues may resolve now that I have no inflammation present...in regards to what I'm taking for pain, just tylenol right now...my doc wants the rheumy to address this...I also use my moist heating pad a lot...can't take nsaids as it will effect my jpouch....in regards to exercise...I agree it would be helpful...need to force myself even when I'm not well...

so next week will be fun with appts. with the neurologist and rheumatologist...I'm sure I will also have fun being sent for MRI's and bone scans...I have no idea how I've been able to maintain my jobs!

Thanks for the support...this site is great...it's nice not to feel alone....I have a great husband but he really doesn't understand, how could he...


42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/16/2009 2:13 PM (GMT -7)   
Unfortuantely the ANA may depend on the lab you use. It took about six months on remi for me to get a high enough ANA but I felt it long before then. Ides put it best the effort it takes to move with this kind of pain is like moving thru chest deep snow. Unfortuantely weird joint pain is an issue with crohns.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 2:32 PM (GMT -7)   
MMNAVY...did you go off the remicade b/c of the high ANA? and if so, did the pain get better....I always use the same lab...had an ANA test back in December as well and it was negative then too...I wonder if its my body adjusting to humira?....I'm down to 1 shot on monday...I really hope its not humira as it really has done wonders...moved up my rheumy appt. to this wednesday and my neuro appt. tomorrow...what fun...
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/16/2009 2:40 PM (GMT -7)   
Yes, I went off both remi and humira (I knew what it was with humira).
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/16/2009 3:39 PM (GMT -7)   
MMMNAVY...did the joint pain get better when you went off the medication?
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/22/2009 6:24 AM (GMT -7)   
ok, so as of friday all my joint/muscles aches went away...it was as if it never occured...I saw my neurologist that day and had an MRI of my brain which came back normal (thank g-d) so I took my scheduled dose of humira on monday (now down to 1 shot every other week)..well, last night I woke up with pain in my foot/ankles and today I feel fatigued, nauseas and the joint/muscles aches are back...clearly this is the humira...aren't these flu like symptoms?...isn't that a side effect of humira?...I was so focused on the joint issues, not realizing that a lot of it was muscle aches as well...I'm hoping that now that I'm down to a lower dose it won't last as long...I have my appt. with the rheumatologist today so hopefully he can shed some light on this...this stinks...humira is really working for me...I hope my body adjusts so I can stay on it....

42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 3mg entocort, Humira (started 3/23/09), synthroid, aciphex
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/22/2009 7:08 AM (GMT -7)   
My husband has a similar issue with remicade. From about 4 hours after his infusion, for the next 24-36 hours, he has fatigue, body ache (both joint and muscular), and a fever, so basically flu like symptoms. We told our doctor about this, and he now gets more pre-medications. He just used to be given oral benedryl and tylenol before his infusion, now he gets IV solumedrol and IV benedryl before his infusions, and it has for the most part, kept those symptoms at bay. Now he just complains of slight fatigue, very slight muscle ache, and a very vague and slight headache - but he's functional, not like before, when he couldn't get comfortable and everything hurt so much.

Perhaps there is some way you can pre-medicate with humira as well. Maybe take a dose of steroids and benedryl right before your infusion - though I know that humira is a bi-weekly thing unlike Remicade which he gets every 8 weeks. Do talk to your doctor about how to pre-medicate with humira - I think if you can do that, you'll be able to suppress your body's response to the humira.

Do let us know what kind of pre-meds your doc recommends, and how it works.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, and in crohn's remission, knock on wood


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/22/2009 7:14 AM (GMT -7)   
I did go off of it, but unfortunately too late and still have a high ANA.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/22/2009 8:05 AM (GMT -7)   
Thanks for the advice PV...I will let you know what my GI says...I have an appt. with a rheumatologist today, it's my first appt...I'm hoping he will be able to help...I'm so sick however I don't know if I'll be able to make it...I called to try to reschedule but the next appt. isn't for another 2 1/2 weeks...so I'm going to see if I can get someone to take me in case I feel to sick to drive....

MMMNAVY-sorry to hear that you had lasting side effects...it's awful how sometimes the treatments for this disease is often worse then the disease
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 3mg entocort, Humira (started 3/23/09), synthroid, aciphex
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 10:38 AM (GMT -7)
There are a total of 2,735,394 posts in 301,299 threads.
View Active Threads


Who's Online
This forum has 151402 registered members. Please welcome our newest member, Len.
340 Guest(s), 6 Registered Member(s) are currently online.  Details
robotguy, smlafleur, maria2016, messthezombie, InTheShop, JackH


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer