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Doc admits to Remi sideffect...

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Crohn's Disease
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Posted 10/28/2008 4:59 AM (GMT 0)
I went to my rhuematologist last week for all the back pain and body aches I've been experiencing. Upon examination she said that my lower back seemed to look alright and pretty much blames it on my crohns-related arthritis. But as for the body ache, she said that she had researched Remicade online and-surprise surprise-found that many patients on remi complain of this body ache. I had been telling her like forever now that I really felt that they were connected, but of course NOW it makes perfect sense to her!

But something still isn't settling right with me. I've had ongoing non-stop body ache ever since my last Remi 3 weeks ago! And its been getting worse and worse. I know I've discussed this on here with a lot of you before, but I also remembebr most of you saying the aches were minimal and just for a period of time before or after your infusion. Any comments on that..?

 

Oh and I wanted to thank you guys for all the suggestions on pain meds--non-narcotic-non-nsaid-stronger than Tylenol. I asked my doc about Ultram/Tramadol and she thought it was a great idea and prescribed it to me. It works great, I've been having to take it everyday though for the past week and a half shakehead . What do the instructions say on the bottle for some of you..?

thanks guys!

 

Posted 10/28/2008 7:56 AM (GMT 0)
Um, Ultram and Tramadol can tear up your stomach alot worse and alot quicker than most narcotics. Years ago, I asked my doc for these and he said no way!1 he would give me vicodin like crazy over that stuff. He was my Doc for 10 years. i moved 2 years ago and new doc had same opinion. I don't want to scare you or discourage you from taking care of your pain relief, but pleae look into thoses to meds more. even the ER dept have said the same thing, even through the IV it has to be at low dose de the aggravation of the stomach. this my experience, and hope you do the research!
Posted 10/28/2008 1:50 PM (GMT 0)
when i was on Remicade i had to walk with a cane for 2 weeks after every infusion. I was in so much pain all over. My back would hurt so much that anything that touched it would just light me up. but, hey, put me in remission so it was worth the suffering for a year. they finally took me off the remi due to non stop hives. i had been dx'ed with Fibromylgia during the remicade treatments but all symptoms of that went away a few months after I stopped it.
good luck!
Posted 10/28/2008 2:46 PM (GMT 0)
you may want to have a remicade anti-body blood test..i did after my initial 3 loading doses of remicade because i had such terrible body aches and flu like symptoms (which could also be from weaning off prednisone i guess too! and even being on 6mp)...if the test turns up positive it means that ur body is fighting the remicade, causing those symptoms, and the remicade will be useless because it wont work...kind of scary but it's good to know...im getting my first real dose this friday and have recently developed the terrbile back pain, which could be from the prednisone i guess, but of course the lab did the wrong test and i dont know if i developed antibodies against the remicade, so i'll have to wait and see about that...i really hope that i dont get those flu like symptoms again after my infusion..sounds like alot of pple feel that way after...it was soooo painful for me...im talking chills and horrible body aches..i hope that was just a one time thing :(

Posted 10/28/2008 4:30 PM (GMT 0)
Oh jeez. I am scheduled for infusion #1 of Remi on Monday. cry I'm having serious second thoughts. shakehead A lot of my Crohn's manifests itself in joint pains. The last thing I need is a drug that adds to my problems. Oh man, so confused and worried.
Posted 10/28/2008 7:31 PM (GMT 0)
Miguelblanco,
I just wanted to say, if you CD is not tolerable, the joint pain is worth it. You may not have any problems...many people don't. I was in the small percentage that did. It put me in a 4 year remission where I was drug free. So, I consider all the problems I had worth it. Good Luck, u'll make the right decision.
-Jeny
Posted 10/28/2008 8:20 PM (GMT 0)
Good luck, Miguel! If my eye keeps flaring, I may end up on Remicade soon myself! I am afraid as well.

I have some joint pain, but the worst of my Crohn's is in my eye and in my gut.

Like Jeny said, maybe you will not have any problems..let's hope for that!

Keep us posted and let us know how it goes!
Posted 10/29/2008 1:42 AM (GMT 0)
It really IS worth it Miguel. I know its wierd to hear me saying this after all my complaining, but trust me, I learned the hard way that Remi is the only real med out there that puts me in remmsion for a longer period (personally speaking of course) than any other med does. And I too have joint pains from my crohns--really really BAD dissabling joint pain and stiffness. And although I am having this body ache now-which btw I still don't know exactly what its from-I would still choose this over not even being able to bend my legs and arms and get out of bed. I went through a whole year of being on remi and actually stopped it cause of sideffects, but then got even worse than I ever was so now I'm back on it realizing how good I have it despite everything.

I guess I was having the body aches with the Pred before even starting my Remi this time around (I'm still in the weaning process). But I know for certain that it got worse after starting it too. So I don't know, I personally feel its a combo of both. But if I didn't read about all of you and your experiences with remi and body aches then I defiantly would be freaking out let me tell you that! So I'll just bare with it as much as I can with my trust painkillers until I'm just completely off the Pred, and then I'll ask my doc for the antibodies test.

Oh and about the Ulram, I will do my research but honestly I feel fine taking in fact this is the first pain med I've actually taken and not felt practically ANY stomach irritation!

Posted 10/29/2008 2:28 PM (GMT 0)

miguelblanco said...
Oh jeez. I am scheduled for infusion #1 of Remi on Monday. cry I'm having serious second thoughts. shakehead A lot of my Crohn's manifests itself in joint pains. The last thing I need is a drug that adds to my problems. Oh man, so confused and worried.

I suggest trying it, and stop worrying! :-) Worrying only makes your symptoms worse.   I've been on Remicade for years and it is a Godsend!   Lots of people, most, on Remicade find it a wonderful drug.   Just think, the worst that can happen is an allergic reaction or joint pain for a couple of weeks, and you'll know to try something different, but most likely you'll find it is GREAT like the majority of us.
Posted 10/29/2008 2:46 PM (GMT 0)
Yeah, I'm gonna try it. tongue
The GI clinic just called to confirm my appointment for Monday and I didn't even freak out and cancel! smilewinkgrin
I really want to feel better. I was unable to play golf this summer because of this DD, and I absolutely live to golf in the summer. My hope is to feel well enough to play again come Spring. Hands/fingers are painful today. It was a reminder that I need to try the Remi.

Thanks for the words of encouragement. yeah
Posted 10/29/2008 5:11 PM (GMT 0)
I had an infusion a little over a year ago. The pain in my shoulders and jaw was so intense it almost locked the joints up. I can't believe how bad it was. Thank Jesus it only lasted a few days. It was so painful I would never do that again.
Posted 10/30/2008 3:24 AM (GMT 0)
So you're saying that the pain was actually from the remi infusion??
The pain is just so horrible today. I woke up with what seemed to be my entire usual body ache all in my head! Then as I felt more pain in my body, the headache decreased. Funny huh? Its been 3 hours since I've taken 2 Ultrams and I know it has kicked in as much as it could to help with the pain, and I'm thinking about just taking a Tylenol Coedine. I'm just so uncomfortable. Do you think thats too much Tylenol in too little time??
Posted 11/5/2008 11:16 PM (GMT 0)

  if you take remicade for more than a few infusions having these horrible pains you might get real lucky and end up like me   in horrible chronic pain , fever, chills etc.nothing can be done except steroids to control the inflamation.. make sure it is your last resort   other wise you very well may end up like quite a lot of us.. no life .. you think crohn's is bad.. its a cake walk  .. stop taking it if you  have that kind of reaction.. they gave me more and more saying that i needed it for the pain... now my life if done...  good luck & be SMART

Posted 11/9/2008 11:44 AM (GMT 0)
Just be careful. They tell you that Remicaide lowers your immune system. i tested fine before for TB. 3 weeks ago, I tested positive for latent TB. My immune system got too low.
Posted 11/9/2008 1:42 PM (GMT 0)
Hi I took Rem. too and never had the body pains that I had after Rem. but I was on pred. and Imuran too so who knows if it was the meds or crohn's. My leg used to pain alot and I needed crutches for a few days once in awhile. Today I have knee ,finger joint and other pains that I never had before.So it is hard to say go for it or not when a person doesn't know what is going on with the body as to what started what. Limbo I guess it's called. lol gail
Posted 11/13/2008 6:34 AM (GMT 0)
As I'm decreasing my Pred more and more (now down to 2 and a half mg) I'm leaning more towards the theory of the Pred being behind the body aches..at least most of it. Whats been happening is I get my remi infusions and tapper all at the same time together (cause thats when I see my doc and she decides to decrease it more) and its probably reeeeally hard on my body to adjust to both at once. Does that sound reasonable at all or am I goin too far here??

The main thing that made me decide this though is the way I felt last week the day after my remi - MAHOR JOINT RELIEF smilewinkgrin  just like the first time I had ever tried it. I'm so greatful for it (you would be too if you had the crippling/disabiling pain that I had). It was a different relief from a different body pain unlike the body ACHES I still experience. Even if I do find out that the body aches are from the remi, I guess its worth it for mobility. But again, I doubt it - the past 2 days the only thing that would help is Ativan! Its clearly mainly nerves thats seems to be brought on by my body wanting/needing more pred as I'm trying to get off (do you like my self-diagnosis..we get better and better at it i guess). Only time will tell but meanwhile one of my docs upped my Cymbalta. Hope it helps.

 

Posted 11/13/2008 8:39 PM (GMT 0)
A tough decision - I took Remicade for over a year and when it worked it was excellent!!! It actually took my Fibro/arthritis pain away.
Before I could not even walk across a grocery store and then when I started by the second infusion I was sprinting around. It felt like
a miracle. It lasted long enough to build up my strengh. If put my UC/Ch in remission for the first time.

Then it reared its ugly head on me and I developed an allergic reaction against it but that happens with all of my medications. This one
lasted the longest and helped the most. I also have friends that took it and when they stopped their Crohns stayed in complete remission.

Good Luck with your decision. I know it is a hard decision to make. Me I am dealing with Moon Face /Prednisone. : >
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