Please help--Remicade side effects

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.

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

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!

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

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!