Imuran/ joint and muscle pain

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melissah
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/12/2008 7:51 PM (GMT -6)   
Hi everyone,
hope everyone is feeling well today.
Firslty i just have to say how much this forum has been of tremendous help and support to me. i have had Crohns disease for 2 years now and have been symptom free. i have eaten anything i wanted, including dairy and junk food, which i couldnt help!
At times i have been tired due to anemia/ b12 etc but lately i have severe joint pain which started off as muscle pain. im a worried person normally, but it hasnt affected my bowels at all, just irritating pain in back, neck wrists fingers ankles and knees! can anyone give me advice as to what helps with joint pain? or who i need to see. i have had a thyroid test, lupus test, arthritis and glucose test, crp test everything! i wanted answers and i have none
i am on 100mg of imuran and have been for 2 years..
xxxxxx

elroque
Regular Member


Date Joined Apr 2008
Total Posts : 38
   Posted 5/12/2008 11:00 PM (GMT -6)   
Are you on 100 mg of Imuran daily? That is what I am on. Anyways, have you let your GI know about the arthritis? When I was first diagnosed back in November one of hte biggest symptoms plaguing me along with the bloody diarhea, stomach aches, etc. was the arthritis. I had become practically imobile in November and had had the arthritic symptoms since June 07 and they steadily worsened. Anyways, my PC sent me to an Rheumatologist who put me on some nasty stuff called Plaquenil (and I call it nasty because it has some nasty NASTY possible side effects-retinal bleeding), steroids and Celebrex but right off the bat she thought I had one of the IBD's (she actually told me it sounded like Crohns). Anyways, I finally saw my GI who thought it was nuts that I could barely walk/function and he put me on a crazy dose of steroids and once he confirmed the Crohns Colitis he put me on the Imuran and tapered me down to a more reasonable amount of steroids. Eventually the Imuran and steroids were not doing much for the arthritis (though it did get better but not good enough to allow me to move well enough with or without a cain) so now I am also on Humira. So I think you should let your GI now or any one of your doctors know that you are getting some type of symptoms of arthritis and that you also have Crohns so that some medical professional can point you in the right direction to find the right things to alleviate your issue with the arthritis.
 
Best of luck and keep me informed on what they tell you. Also, this forum has also been such a tremendous support for me. It is nice to be able to connect with others (even via cyber space tongue ) and to know that you are not alone and not going crazy.
 
BTW I also had all the tests you had run a looooooooooong list of others and everything came back negative. That's how they basically figured the arthritis was related to my Crohns.
Rock
 
Love many, trust few, but always paddle your own canoe....


melissah
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/13/2008 2:20 AM (GMT -6)   

thank you for your response!
my family told me it was just all in my head, but i knew i was feeling weak accompanied with muscle and joint pain. im only 23 and i play heaps of sport and have done so for most of my life... so its hard to realise i may have to give it up although when i play netball etc, the joint pain doesnt bother me???? its strange. im hoping it will pass, but my specialist is expecting me nxt week, so he better be ready for a million questions! i havent got depression chronic fatigue, lupus, thyroid, diabetes etc! so im so worried about going back on steroids.. id do anything to avoid it.

may the specialist reduce my imuran? has anyone else had to reduce thier meds??

sorry about the million questions, im sooo worried!

xxx


elroque
Regular Member


Date Joined Apr 2008
Total Posts : 38
   Posted 5/13/2008 9:56 AM (GMT -6)   
I have barely been on the the 100 mg of Imuran since November and at this point I am not in remission enough to start decreasing the dose. I still see my GI every two weeks to try and achieve remission but his hopes (along with mine of course) is to get me off the Imuran, steroids and Humira completely and find me some other life long remission drug that does not have as many or as bad side effects as the other three. I am only 28 and have also been a life long athlete so getting any type of arthritis was debilitating enough but at the severity I had it, it was the worst!! Then on top of that just being so tired all the time is crazy! Not to mention all the potty episodes made me feel like I had to haul around my own personal toilet because when iI have to go,,,,I HAVE TO GO and it is pretty frequent and always seemed to hit when I was out doing something. So tell your family that you are not nuts and this is actually happening to you and it does make you feel bad. I know it is hard for them to understand even though they love you, they don't have the slightest clue what it is like to live with this disease and the daily struggles we have to overcome. Anyways, let me know if they do lower your dosage of Imuran.
Best of luck and lots of hugs! yeah
Rock
 
Love many, trust few, but always paddle your own canoe....


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/13/2008 6:22 PM (GMT -6)   
elroque, sorry to butt in, but you didn't say whether or not the Humira helps your joint/muscle pain. I am on 40mg of Humira weekly and alternating daily doses between 50-100mg of the Imuran (can't tolerate any more of the Imuran because I become toxic). Anyway, over the last 3 months my joint/muscle pain has increased and is pretty much described as melissahs. I have my first Rhemy visit on the 21st and the GI has done all my bloodwork including ANA and AS....so we'll see. Your specific input on the Humira/Imuran would be most helpful.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


melissah
New Member


Date Joined Jul 2006
Total Posts : 13
   Posted 5/13/2008 10:20 PM (GMT -6)   

thank you for your helpful advice.

i just went to my local pharmacy, and practically begged them for something that will help joint/muscle pain. they gave me anti inflams; Voltaren rapid, and i feel better. but i am angry that after 2 years of normal living and eating anything i want, has turned to joint pain so suddenly??

im frustrated as can be, and understand i am lucky with my illness compared to some, so i shouldnt whinge, but i cant help it.

so i have heard about celebrex, can anyone give an insigbt into their experiences with this drug, or similar...

thanks for listening!

luv mel xxx


elroque
Regular Member


Date Joined Apr 2008
Total Posts : 38
   Posted 5/14/2008 2:39 PM (GMT -6)   
Whoops! Sorry about that broomhilda-I left the most important things out. The 100 mgs of Imuran daily (50 mg in the morning and 50 mg in the night) helped with some of my other symptoms but it was not effective on the arthritis at all. I have been on it since November and though it has helped sort of control my other issues my GI was not satisfied with its results with the arthritis and that is when he put me on Humira. After my initial does of Humira which was 160 mg (4 injections) in one day, I saw some significant difference with the arthritis. Namely, I no longer had that constant pain, my joint were not stiff and I could actually get out of bed, step into the bathtub, etc. without manuevering some type of crazy acrobatics since I had been unable to bend anything. For that week after the initial dose I actually got the best sleep of my life since all this started (though it was short lived because now I wake up multiple times a night after having the craziest and most vivid dreams/nightmares so that sucks) I am now on 40 mgs of Humira every other week (that is all my insurance approved) and the Imuran. Though I have to say my quality of life has greatly improved I still get bouts of arthritis that no matter what I take still persists. For that reason I am also on Ultracet for those type of instances with pain. I still have some problems with some pain and stiffness and lack of mobility with my knees and lower back but at least it is not my entire body which was how it used to be. Before I could not walk, I could not grab onto anything because all the joints in my arms, hands and fingers were swollen and painful. I also had severe pain in my neck, upper back, lower back, hips and was basically swollen everywhere. Fortunately for me, the Humira has been working well.
 
I am also on a daily dose of Celebrex (400 mgs a day-200 in the morn and 200 in the evening). This has worked wonders for me in regards to the swelling due to the arthritis. I know that it is not a fave for others with IBD's because it can be irritable to the stomach but I have not had that problem at all. Unfortuntately, I need to take the two 200 doses in the morning and night becuase once I lower it I begin swelling up especially around my wrists and ankles. Again, Celebrex has also worked very well for me and I will continue using it since it has been so effective. It was originally prescribed to me by my Rhemy and then my GI has continued to prescribe it since I no longer see my Rhemy due to being diagnosed with Crohns and the arthritis being a direct symtpom of that.
 
BTW broomhilda, what do you mean the Imuran makes you toxic? What exactly happens to you?
 
Oh and mel? Dont worry about whining. It is OK. Sometimes we just need an outlet for our frustrations and we all know that having this illness is VERY frustrating. I know what you mean about being well for so long them getting a crazy flare up with crazy symptoms. It is a craaaazy roller coaster ride.
Rock
 
Love many, trust few, but always paddle your own canoe....


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 5/14/2008 2:44 PM (GMT -6)   
Joint pain can happen suddenly. That's what I'm dealing with right now too. I just had a bunch of test run yesterday and found out today that I have Inflammatory Arthritis due to the Crohn's. They thought maybe it was Gout but I had no crystals in the fluid they removed from my knee.
So its all related to my Crohn's. Now I just have to see what action plan my Crohn's doctor is going to take with me. I've been out of work on medical leave because my joints got so bad I could barely walk.

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/15/2008 12:04 AM (GMT -6)   
elrouqe- I am one of the few genetically speaking who can't tolerate the normal dosages of Imuran.
My liver can not process higher doses so therefore it becomes a toxic drug for me. I believe with my Humira and the Imuran (being dosed at the normal levels), my CD would be sooooo much easier to control and possibly I would see remission. Unfortunately at the lower dosages of Imuran this is not the case for me.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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