Remicade | Arthritis Information

It seems that after I got my first infusion of remicade last week I feel a lot worse than before. I don't know what could be going on here. I was assured that if it were a reaction that I would have had it very soon after the infusion started or a few hours after it. All I had was a bit of an upset stomach and a really obnoxious headache. I don't think remicade is going to be the one either.

The muscle weakness is what really has me worried though. It was there before the infusion but seems to also be getting worse. I've seen a neurologist who said that my emg and nerve conduction study were normal. For some reason, I don't think I'm going to survive much longer. I'm just at the breaking point. My nerves are shot, and I can't take this pain any more.

Bob please get in touch with your Doctor or the Hospital.....there must be something that can be done in the interim to sort your pain. Please get to a Hospital and demand some immediate pain relief. It will be impossible to think clearly in that much pain.

I feel so bloody helpless ... I am so very sorry you are going thru' this. Hang in there Bob others will be along soon with words of advice.

Hugs and prayers sent to you

Lyn xxxxxx

Hey Bob, don't give up. I know this may all sound like platitudes at this point but please hang in there. I know how you feel when you reach the depths of your reserve. Just dragging up the energy to go on seems like too much effort, your head is screaming, voices of others can be like nails on a chalk board. Make it through tonight, Bob. Don't think about tomorrow until tomorrow. Keep telling yourself there is an answer for you, you just have to find it. It is a hard thing to swallow, especially when you are in the kind of misery you are.

I don't have any more advice other than talk to any doctor you can get to listen on Monday morning. You have loads of people willing to support you, Bob. Hang in there.
Oh Bob, I'm sorry you're feeling so down and discouraged about the new treatment and that your pain is so bad. It sounded like from other posts that it is probably too early to determine whether the Remicade is effective. The pain does crazy things to your head, like making you think you are not going to make it much longer, but you will. You ARE a survivor... you have survived this for so many years and you will continue to do so. I pray that you get some relief very soon and that your hope returns just as quickly. hi Bob, please go to hospital and get some pain relief. There has to be something they can do for you. Stay strong and remember tomorrow is another day and it could be a good one.

take care

oh no! I'm so sorry you're feeling this bad... but yes, please hang on there.. go to the ER if you must... do not give up..

dear bob

dont give up yet it takes time. our weather here has been all over the place so maybe there are other reasons for your pain. it took between 3 and 5 doses for me. it helped for at least 5 years pretty good i was stable and able to make plans with people and not cancel all the time. and everyday i did not think about - PAIN - and my joints did not get worse either so stay positive!!!

Hey Bob, if I can take the pain then you can take the pain and we will fight together and complain together. o'k? and lift each other up! do you have any pain meds? get some ;-)((((((((((((((((((((((bob))))))))))))))

I really don't know you, but I DO understand that type of pain!!

Its awful! I really hope you get some relief soon!!!

I got on OPANA, and it really Really helps.. its a major pain med.

Remicade worked the first time, for me, but the 2nd time, i had a reaction..

Anyway, i'm really sorry you're hurting soo much!

I think, we've all been at our end of the rope, one time or another..

soo hang in there a little bit longer.. get some Major Pain meds!!

Vicodin, etc..

Let us know how you're feeling...good... bad, .. it helps to vent.

Bob, How are you doing today?Hello Bob,
Hope you are feeling better today. I am not sure that we've met before as I have been away from the board for awhile. So sorry to hear about your pain. Life is hell when there is so much pain and I totally agree with the others. If you are not feeling any better get something for the pain and get as quick as you can.
I hope today finds you feeling better.

Definitely let your doctor know how you are feeling. You are not going to feel benefits of the Remicade this early, but you shouldn't be feeling any worse. I know one time when I was feeling really awful, my RD gave me a steriod infusion with my Remicade.

Please check in and tell how how you are doing. It doesn't matter if you gripe-that is what we are here for. We care about you. Starting a new med is always stressful. Especially during the transition period.

Bob- I am so sorry to hear this. How disappointing to feel worse. Please let us know how you are doing today. I'm hoping it was just a temporary setback. Bob....Add me to the list of people who are thinking about you and hoping that you soon get relief. Please don't give up, but get some immediate help instead! My old Rheumatologist (over 40 years ago) told me that you can often get worse before getting better. This was the fiirst couple of weeks on a new medicine. It was called Choroquine (not sure about spelling). The new form of it is now called Plaquinel. I did get better and was in remission for seven years! ONE THING CERTAIN ABOUT THIS DISEASE IS THAT IT IS UNPREDICTABLE. IT CAN IMPROVE OR GET WORSE FOR FOR NO OBVIOUS REASON. I think this is one of the reaons we all get so frustrated and discouraged. HOLD THE THOUGHT THAT THINGS WILL GET BETTER!The thing is that my RD really just doesn't seem to give a damn. Which is why I'm going back to my old one. But that won't be until april 1st and her drug of choice now is Orencia. I don't think I need a steroid infusion with the 45mg I'm on right now. The doctors around here refuse to give me pain meds because the rednecks around here all go wanting them so they can feed their habit or sell them to get a case of budweiser. The only time docs want to give pain meds out freely is when you're in the hospital around here.

I've been holding onto hope for 8 long months now. Now it seems all hope is gone. I don't know what is giving me the shakes so bad now but it's really just getting discouraging when one thing after another keeps going wrong. About the only thing that ever comes from seeing a doc is them throwing another pill at me. I'm at 11 prescription drugs now. When this flare started in June I was on Enbrel, MTX, 5mg of Pred and 1mg of folic acid. I was supposed to take celebrex but just used tylenol arthritis as needed.

I'm just totally out of hope right now and there isn't much I feel that will change that. I've even entertained the thought of ending my life the last few days. I was almost talked into it while sitting here at home alone yesterday.

Bob, we are here for you. There is help for you!

http://www.metanoia.org/suicide/

However much you need to vent, to write, please do! We are here for you! There is hope!!

We are ALL here for you! I feel like my tongue is tied- like I don't know what to say- I can't think of what to say to make you feel better. But I can listen. Please keep reaching out Bob. You are going to be OK- I know it- just hang on!

Bob,

I am so sorry to hear this....please take advantage of the resource that Katie sent you, or call a hotline. They will help you and be there to listen to you. You deserve pain medication and need to get some relief. Can you go to the hospital for immediate relief? I hope you are feeling better today. I will keep you in my thoughts and prayers Bob...Hiking_gal

Bob, I'm sorry. I don't post much here anymore but still read most days. I'm the one they figured out has sarcodiosis instead of ra. I have been where you are. October 2007, I did try to kill myself and almost succeeded. Almost 6 weeks in the hospital. I had that same hopeless feeling. The same I just can't go on another day, another minute feeling. Its really awful, the loneliness, the despair, the helplessness.

There IS help. If you go to any hospital and tell them you are suicidal, they can not turn you away. There are many hot-line numbers. I didn't realize it at the time but I had more friends that I thought I did and in hindsight they would have all rathered that I called them instead. I know its hard to keep fighting, to keep going when it seems like it will never get better but thats what you have to do. Reach out for the help, go to the hospital, call a friend.
I can't add anything more helpful than what Micheleb wrote, other than to let you know that I am thinking about you and hoping you make a good choice to seek help. Hello Bob, I am wondering how you are and hoping you are still hanging with us all. Please let us know, I know there are loads of people pulling for you. You are in my thoughts and prayers Bob.....hope tomorrow is a much better, positive day for you. Please let us know you are ok.

Lyn xxx

hey bob.. hoping ot hear from you today!! hang in there.. there are better days ahead.. I promise...

Bob, I have been on Remicade for 1 year now, it has helped me my rd had to increase it to 600, but I feel better, just give it more time for work for you. You are stronger than you think you are and know that a lot of prayers are going up for you. We wish you the best. today will be a better day.

Hi Bob,

Thinking of you and I hope you are feeling better. Hiking_gal

My thoughts are with you....take one day at a time Bob, dont get overwhelmed by this. There is hope I promise...xx

hope you are feeling better todayBob, hope you are doing better. Havent heard from you for a couple of days.