I've tried every med from remicade to humira to imuran to flag, I'm now thinking best option is surgery again(28 first surg) but having more probs managing & getting dr help with 2ndary symptoms ie: joint pain, back pain, skin infections, dry eyes, gum & tooth infections etc also had sarcodoisis at time of 1st surg, how do I get 2ndary issues dealt with without sounding whinny or like only after pain meds (Back has arthrtis like inflam. & knees now affected)
Secondary inflammation issues & other weird stuff caused by crohns?
- Posted:
- 5 Oct 2009 by Lucky-girl
- Topics:
- humira, imuran, remicade, rheumatoid arthritis, sarcoidosis, subcorneal pustular dermatosis, crohn's disease, crohn's disease -- acute, crohn's disease -- maintenance, surgery
Details:
Responses (7)
14 Oct 2009
I have had Crohn's since I was 26 and am now 47. It sounds as though I have been through all you have with the exception that I chose Humira over Remicade as I have a needle phobia and knew I could not handle having an infusion all the time because my veins roll and infiltrate easily. However, I am lucky that the Humira seems to be working well with me. My GI doc started me on 1x every 2 wks then increased it to every wk and that caused me such severe constipation, that I quit taking it all together. He then STRONGLY suggested I stay on at least 2x month as I was increasing my risks of having a SEVERE relapse/flare of my Crohn's. So far, I am doing O K A Y - still constipated to a point but I am one that has had SEVERE diarrhea since I was diagnosed - so I am at a point that I can tolerate it. However, I have had one bowel resection and I was in my 20's when I had it.
28 Dec 2010
I really don't know how to handle the 2ndary ones except I would talk to my gastroenterologist & I also go to a pain clinic for my back... however, most GI docs don't like that idea. So your GI doc may want you to go to your family physician instead... just ask them & go from there..
God's Blessings for you on your journey!
Kari
jennyboom2 Aug 2011
Hi, I have had chrons disease for 12 years, in that time i have been on several different med regimes, I recently had an remicade infusion, but I also had surgery several years ago and was in remission for 5 years with absolutley no symptoms! However last summer I had another flare up, so surgery is definitely a good option, but as we all know the disease never goes away. As far as your other symptoms,I also have severe arthritic pain, and anxiety I contribute it all to this disease, I suggest speaking to your GI doc as well as a pain managment doctor. I hope all goes well.
28 Feb 2012
Lucky-girl, I had a bad responce to Remicaid and I had all of the secondary symptoms that you mentioned. The terrible part was that it takes at least three months for it to were off. Durring that time I just felt run down and like I had the flu. I just started Humera for the first time this last week and it does not have the mouse protien that is in Remicaid so it is supposidly a better option for me. To deal with the all over body pain I took lots of hot baths and tryed to go walking to help loosen up my body.
28 Feb 2012
I am old and was diagnosed with chron's a year ago. With all the research I a have done, it would seem I have lived with this ugly stuff for most of my life (nearly 67 years). I may not be contributing to the information flow of you young people but thought I should share. First I had no arthritis symptoms before meds for Chron's. Have been retired since 1996 and very active - traveling cross country in my fifth wheel pulled by a medium duty truck (Freightliner) since 2000 seven times. Remicade was my choice (didn't think I could do the humira shots) but can be respectful of a professional 'vampire' for the infusion, I have had 10 infusions in the last 13 months.
jebnow29 Jul 2012
I truly feel for you.I really do and am so sorry to hear what you are going through!
I have the same issues. The only difference is that I am treated for the joint pain (I have Ankylosing Spondylitis and some other arthritis issues from IBD). The other difference is that I test blood test positive for Crohn's disease, but the many different colonoscopies show non-specific Colitis *whatever that means. Therefore, no Gastro will treat it. So, I suffereveryday from horrific stomach pain, fear of eating, dirrahea etc.
I do know that you could see a Rheumatologist to help treat the arthritic symptoms you are having. They should be able to treat those symptoms with no problem. At least I would hope so!!! :)
Best wishes,
Julie
12 days ago
Has anyone tried 6 MP (6-Mercaptopurine) Purinethol is the Brand name? I have had Crohn's off and on for many years and 6 months ago had a right hemicolectomy for a severe blockage and fistula. It appears that I now have Crohn's symptoms in my small bowel again. Before the surgery I was in remission. I don't know if this is a newer medication for Crohn's, but it appears that it can cause pancreatitis when taking it for bowel issues. I am very leary of this drug that contains medication used for leukemia (chemo type of medication). I appreciate anyone's feedback.
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you sound almost like me except after my resect it took only 1 year for my chrones to come back with a vengence, i have been on pills for a year now and it hasn't done any good, so now im getting ready to start humira, i have really been scared about taking it after reading all the side effects, i haven't really been able to find anyone that has chrones, i know only one other person that has it so ive not been able to ask a whole lot of questions, so maybe talking to you can help me out
Just started taking humira 1 week ago to this date.So far so good.No real side affects at this time.Don't know if it is in my head but seem to be feeling less pain on right side.I have 20 cm of swollen bowel that has been a nightmare over the last year,never have had any surgery yet thank god.I started with initial inj of 160 mg which was 4 shots.Will give this a try and keep informed.Will end up with a shot of 40 mg every 2 weeks and keep fingures crossed.I to worry about long term use and look for some advise from anyone who has been on it longterm??I was told it would likely be for life it it works but also afraid of longterm side affects.If anyone has any advise or anything i should be looking out for while using this i would appreciate it..And to anyone feeling bad i hope and pray you feel better soon.
I can understand your issues with being worried about long term effects. I am too - also hate the fact that Humira lowers your immune system as not only do I have Crohn's but I also have COPD & again spine issues in my back... also have hiatal hernia which is GI related as well. I just figured I would give it try and pray God takes care of the rest... if it don't work out, I will just have another bowel resection and go from there. I just believe God will not give us any more than he has equipped us to handle so... I live believing that...
will be glad to talk any time.
Kari Weaver
No problem,if you have any questions i will try to help you out.
Thank you Kari & Kevvlin for your comments. My crohns has been ok the last few months, neither up nor down. Did discover "Giardia" or "beaver fever" last Xmas-spring. It's known as the "pooping" sickness so imagine that added to crohns. Haha! I did lose 25 lbs of prednisone weight that was hanging on. I've discovered my back has arthritis like a 90 yr old ditch digger (I'm 36, stay at home mom) and have herniated disc. Tomorrow I start a series of cortisone shots in my back. The back dr seems to think that a totally reasonable course of treatment is to get these shots every 3 months. Yeah right! So I'll be back to my crohns dr to see yet again about a new or old wild & crazy drug that will help control the inflammation in my system caused by the crohns, arthritis, crabbiness & as my hubby tells me, plain old meanness. Anyway.
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We had a good Christmas hope you did too, and no matter what, I hope your crohns worries dont get you too down. I always tell myself, others have it worse, so be grateful. Take care & may 2011 bring you good health! Happy New Year!
To Kevviin: I am on Humira and don't know if you can really consider the time I have been on it "long term" or not but have been on it for approx 2 years now and I do see an improvement, especially at first. I am now dwindling down on how much it helps me. At first I could tell a GREAT improvement but now it seems to be less and less effective as my Crohn's progresses. I fear I am in for another bowel resection within the next year. The biggest side effect I was concerned about is the way Humira lowers your immune system as I also have COPD & even a cold puts me down. I supplement my diet with a good amount of vitamin A daily as it is to help your immune system. Other than that I have had one pen that misfired and got bruised but other than that, I have been okay. I would rather take what side effects I get over the Crohn's pain any day. Again, however, I hurt all of the time on my right side again.
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It has been so bad at times I really thought that on one of my episodes that my bowels were going to explode - I really felt I was going to die but I was too stubborn to go to the E.R. because I have had obstructions in the past and I DESPISE having to get that dang tube put in my nose and down my throat into my stomach to get the obstriction cleared/cleaned out of me.
I don't know that I really helped answer many of your questions or concerns, but I wish you well. I also had the initial 4 shots and take one every 2 weeks and it helps a lot. Maybe I better try every week one more time before I consider another resection. The first one is the worst in my opinion because you don't know what to expect. Just be ready to give up some time if you have to have one because the recovery is a bit on the slow side!!!
I appreciate all of you responding to me as it was said, it is hard to find others with this disease to discuss issues related to Crohn's.
I pray you find a combination of things to help. The thing that gets me through when I am at my lowest point, is at least I don't have cancer and I praise God for that! Cancer is usually a death wish but at least we can attempt to control Crohn's with medications and unfortuately slow it down with surgery.
Have a great day!!
Kari
I too have had a recent resection for Crohns disease (11/29/10). They are now recommending that I go on Remicade to keep my disease in remission, as all of my problems came from scarring from chronic inflammation and stricture from the scarring. Now that the area that was scarred has been removed, they are now recommending Remicade to keep me in remission. I am truly scared to death of the Remicade, secondary to side effects and potential complications from the drug. I certainly don't want my disease to come back, but how do I come to a mind/body connection with the remicade? Any suggestions or help??