Please help--Remicade side effects

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meowgirl
New Member


Date Joined Dec 2008
Total Posts : 12
   Posted 12/22/2008 9:33 PM (GMT -7)   
I have had three infusions and I feel absolutely horrible the day of the infusion and the day after, then it goes away. I have horrible muscle aches and my fingers tingle. I'm afraid to say anything because I am afraid they will take me off of it, and I am fine 24 hours afterwards, but I'm wondering if other people have similar side effects. Do they go away eventually? I feel like this is my last hope. My whole life has been sucked away by this disease and I am at the end of my rope and desperate for relief. I had to drop out of law school and am working at a horrible low paying job that is very stressful and not helping me but I cannot afford to quit.
Crohns Sucks


meowgirl
New Member


Date Joined Dec 2008
Total Posts : 12
   Posted 12/22/2008 9:48 PM (GMT -7)   
Should add that my life has pretty much gone to pot (sorry for that) since being diagnosed. We are broke, stopped going on vacations, socializing. Had to quit a good job because I got so depressed and did something stupid after being hospitalized for Crohns flares like 10 times in 18 months and having to drop out of law school. Now I am stuck in a crummy job I can't afford to quit because we have to have two salaries to pay the mortgage. Yadda yadda. I am sorry for sounding so pitiful, but I feel like I am sinking back into that depression hole and I don't want to fall in.
Used to be normal...but now...I'm just frustrated and want my life back...Struggling to keep my head above water
37, Dxd with Crohn's, IBS, Fibromyalgia, Depression, Anxiety, Asthma
Just started Remicade, also taking Azathioprine (Imuran), Entocort on and off, Levbid, Cymbalta, Lexapro, Xanyx, Nexium, Singulair, pain meds as needed


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 12/23/2008 3:53 AM (GMT -7)   
Meowgirl, welcome to Healing Well! Don't apologize for sounding pitiful.... vent all you want! Crohn's stinks. But, you will find wonderful support here. Remicade makes me feel very tired for 2 days. Are you receiving any pre-meds before the infusion? You really should let your doctor know about your symptoms. This may be a reaction to the Remicade which can be taken care of with pre-meds. Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax,  Prevacid 30mg, Vit B12, Vitamin D, Slow-FE (Iron), Hydrocortisone enemas
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/23/2008 4:04 AM (GMT -7)   
Hi I agree with Julie that you need to talk to your Dr. and see about pre meds. Times can get us down a little but I hope you give it some time and keep in touch it helps to get some support when things are getting us down.Hoping things look up for you soon. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 12/23/2008 7:16 AM (GMT -7)   

Hugs Meowgirl!!!

I agree, talk to your doctor about your symptoms--they may be something that taking pre-meds can help with.

I started Remicade recently and have only had the first two infusions but I can feel a difference already.  To be honest, I didn't want to get started on Remicade and I somewhat argued with my GI about it  (bad, I know) but he insisted I get on it because it works so well for Crohn's.  I am sooo glad I did get started on it!  In all honesty, I believe your doctor will keep you on it, even when you mention the side effects. 

I myself got a headache after my last infusion which hung around for a day or two afterwards. 

Please know that we are all here to vent to and we listen.  You do not sound pitiful and Crohn's is tough to live with.  Please keep us updated as to how you are doing!

 

 

 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/23/2008 7:19 AM (GMT -7)   
I have heard that they give you a small dose of Pred beforehand to avoid those types of side effects. I sure hope you get feeling better soon. And don't feel bad about your pity party, we have all been there at one time or the other.

Hugs,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 12/23/2008 11:10 AM (GMT -7)   
I had 10 Remicade infusions at 4 week intervals for my scleritis of the eye. On 9 of them they gave me Benadryl beforehand and I had no problems. On #10 they gave me nothing and half way through
I reacted with sharp back pains. They stopped the infusion and the Dr. looked at me and said to go ahead so they gave me a steroid shot AND the Benadryl and finished up the other half with no other reactions.
Remicade does so much good and is so expensive, they like to continue and get it in you. However, reactions tend to get worse with subsequent infusions so my Remicade days are over. I'm trying to avoid Humira but I think I'll have to start after the first of the year.
As for the emotional issues, last year about now I was blind in one eye and starting to lose sight in the other. I told my wife that I would not tolerate total blindness and if that was the case, I would be leaving this world. After two opthamoligists gave up on me, I found a professor/opthamolgist/retina specialist, with an auto immune specialty. She treated me for 5 months. Now I have 20/14 in one eye and 20/30 in the other. I think she is pretty good at what she does.
I'm sure glad I didn't check out early! Now I enjoy the good days and tolerate the others.
Read my Bio.
Dave D
Retired male in late 60's. Perforated Colon in 92. Diagnosed as Ulcerative Colitis in 93. Uncontrolled flareup in 97 dictated J-pouch surgery. 04 Capsule endoscopy diagnosed as Crohns not UC. Emergency surgery in 05 to remove lodged camera capsule. Biopsies positively diagnosed Crohns at that time. 12/06 Unsucessfully tried Naltrexone(LDN). 2/07 developed scleritis of the eye, tearing and detaching the retina. Treated with high doses of Prednisone. 6/07 Thought eye was healing and started taking Entocort counting on the residual (non-systemic portion) as treating the eye. Wrong. In October eye was not stabilized. 11/07 Started Remicade to try and reduce the ocular inflamation of the Scleritis since I had been requiring more and more Prednisone to keep the eye quiet. 12/07, retina tares and detaches again. Started Remicade every 4 weeks plus 20mg of Prednisone per day. Six months and seven infusions later, good eye is back to 20/14. Bad eye is 20/70. Had cataract surgery on June 05 on bad eye. Eye returned to a correctable visionary level of 20/50. 11/08 had reaction to Remicade; trying to keep going with Imuran and Pred. Need corrective eye surgery and fitted for prism lense to correct that eye from turning out.  Life looks fairly good (literally) today.
Married with 4 grandkids.


meowgirl
New Member


Date Joined Dec 2008
Total Posts : 12
   Posted 12/23/2008 5:44 PM (GMT -7)   
Hey everyone, thank you so much for your encouragement. It really helps.
Used to be normal...but now...I'm just frustrated and want my life back...Struggling to keep my head above water
37, Dxd with Crohn's, IBS, Fibromyalgia, Depression, Anxiety, Asthma
Just started Remicade, also taking Azathioprine (Imuran), Entocort on and off, Levbid, Cymbalta, Lexapro, Xanyx, Nexium, Singulair, pain meds as needed


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 12/24/2008 8:37 AM (GMT -7)   
Meowgirl - you should see about getting a therapist for your depresseion and anxiety as well. It is easy to blame crohns for not taking vacations and socializing. But sometimes it is the anxiety from the crohns that stops us from doing that. We are afraid fo what could happen crohns wise if we go. And sometimes, we just have to take the chance.

As for law school - it will always be there - and when you are feeling better you can go back. Rather than say you "dropped out" say you medically withdrew. What semester were you in? How many credits do you need if you go back? The problem with law school for me is that I am paying for mine all with loans. So I have now invested a butt load and will have to work with a lawyers salary for quite some time to pay it back. It is very scary but my crohns is fairly mild and I am only going to take jobs w/ disability insurance - just in case.

Regarding your stressful job - I understand that you can't just quit. But can you be looking for a new job in the meantime. Maybe you could find one that pays more and is less stressful. I find now that I have crohns I am more apt to just stay in my comfort zone rather than push myself. I dread starting with new employers that don't know about my disease. My current employers have been so great. I don't tell new ones right up front I wait for it to come up naturally (like if I have to ride in the car with them or if I'm in a training and keep getting up to leave.) So try to figure out why you aren't looking and if it is because you are scared, kick yourself in the butt and find a better job. If you were in law school that means you have an undergraduate degree. In what field? I'll try to think up some ideas for you.

HUGS and I hope you enjoy the holidays.
 
Edited to add - I hadn't read your med list - you are already diagnosed w/ anxiety and depression.  Are you seeing a therapist? Do you take your meds when you need to? Are you able to distinguish when the crohns is holding you back and when the anxiety is holding you back?  I think that would be a huge step. If you are medically unable to do something because of crohns and fibro that is one thing, if you are not looking for a new job because you feel stuck, are depressed and scared, that is another.  You can do it!


27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


meowgirl
New Member


Date Joined Dec 2008
Total Posts : 12
   Posted 12/24/2008 12:05 PM (GMT -7)   
Fitzy:
Thanks so much for your words of encouragement. And congrats on making it through to your last year. That is such an accomplishment! I did the first and had to drop out. THen i was constantly in and out of the hospital with the Crohns so I couldn't physically go back, and now we are saddled with my first year loans and all the medical bills, so we can't afford for me to go back. I can't work and go at the same time. My body just can't take it and since then getting the fibro has caused daily pain. I am seeing a therapist and have been for over a year. I have good times and bad, but it is a struggle. I hope you have a merry christmas and look forward to staying in touch. My undergrad is journalism, and I have been working in PR for about 15 years, including fundraising for nonprofits.
Thanks,
K
Used to be normal...but now...I'm just frustrated and want my life back...Struggling to keep my head above water
37, Dxd with Crohn's, IBS, Fibromyalgia, Depression, Anxiety, Asthma
Just started Remicade, also taking Azathioprine (Imuran), Entocort on and off, Levbid, Cymbalta, Lexapro, Xanyx, Nexium, Singulair, pain meds as needed

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