PA Remicade to Enbrel

[web63]

I have been on 300 mg Remicade every 8 weeks since March of '02. In August it was raised to 600mg every 6 weeks. I have just had my 3rd infusion of 600mg and still I have no relief. I am due to get Enbrel by December or January. I am due for another Remicade infusion the first week in December. I do not think I am going to get the infusion. If the other three have done nothing, I do not see the sense in wasting $6000.00 of the insurances' money and a half day of my time. Does anyone have any thoughts on this?
I am on MTX, Azufidine, Folic Acid, Prednisone. I just returned from 9 weeks off (FMLA) from work. I have a computer job, and about every 30 to 45 minutes I get a pain that feels like knives jabbing into my hips. I get up walk around for about 5 or 10 minutes, and I am able to sit for another 45 minutes. The time off did nothing. Within the first hour of returning to work, I got the same pains. My boss is not happy with me because I have to get up so much.
What can I do?

[rosee_posey]

Hello web63,

My heart goes out to you. From your notes it sounds like the Remicade is not working for you. I've been in your boat, with the systemic meds cocktail, and it ain't a fun one. This trial will be long, scary, grueling, and tough. I can tell you that you should hang in there, and I'll be praying for something to work for you.

Good Luck with the Enbrel treatments.

Keep the faith,
- rose

[rosee_posey]

Hello Again Scott,

I was thinking and praying for you last night.

I've tried to re-live my P experience in my mind, in order to find words that will give you comfort...at work I didn't feel like I could pull my share of the load...and I felt sore and tired all the time from the meds...I felt useless when I went on leave, only to come back to work, still feeling unable to work. It's scary, especially when the doctors keep throwing new stuff into your cocktail mix and you're wondering "Gee, I wonder how long it will be before this works?" I remember looking at lesions, wondering if they were going away (or were they just returning?) My brain kept trying to put me down, "Is this going to just keep getting worse? Will I still be able to function in Society?"

Again, what you are going through is hard, scary, and frustrating.

Here's some thoughts for you:

1. You are more than your P.

2. This experience, if you let it, will be one of the most powerful lessons you will ever learn. If you can get through this, you can get through anything.

3. You will get through this! Others have gone this path before you, and live to tell about it.

Keep the faith, and keep us posted - we all want to hear how you are doing. We are here for you, K?

Take Care,
- rose

[Stormrider]

Hello web63
This is the reason I went FINALLY to disability-my life was like the twilight zone. I had more stress form society & bosses than anything else. I was so angry at my skin I finally gave up-then I learned I AM SPECIAL-Since retiring I have enjoyed life to its fullest, and I realized all those years I was trying to please everyone else and not LIVING at all. My P started when everything was experimental- What I am trying to say is "Have faith in Yourself and forget what everyone else thinks" YOU ARE A VERY SPECIAL PERSON. I am 98% covered but I go anywhere & do anything now because I don't do to suit anyone else-Learn to dance through life sweetheart and I don't say this lightly. Good Luck Lorretta