Sooooo frustrated

Hi everyone,

Will try to put my story in a nutshell, since it' been a while since I posted.  I had been on remicade for years and had to stop due to really stubborn veins.  Went on Humira and was doing relatively ok, till I went on medicare and could no longer afford the cost.  For about 6 mos I was doing ok (according to my standards).  Then had really bad flare when I was out of town for 3 weeks.  Let me backtrack for just a minute - I've been taking entocort along with these for a few years.

Saw my GI when I got back (that was back in Feb.)  Since I could no longer afford the humira my dr. suggested going back on remicade, since this is an office procedure and would  be covered.  First initial infusion went fine.  With the next one I had a really bad reaction and it had to be stopped.  Was vomiting, dizzy, and broke out in a body-wide rash.  I know this is not unusual, since my body had worked up antibodies to the remicade. So that was the end of the remicade.  Saw my dr. yesterday and he felt that I should try 6MP again.  I had taken only a few pills a few years ago and felt really sick, so I stopped.  I was willing to see if I could try again, so I took my first pill last night with food as suggested in other posts I have read.  I woke up this am feeling extremely nauseas, no appetite and just an overall sick feeling.  Don't want to go through this again.  I think my body is telling me that these meds are not welcome.

I have a great GI, who is very respectful of my feelings and needs, and I do trust him.  I just don't know where to go from here.  I think I will just continue with the 9m of endocort for now.

I've been dealing with this horrible disease almost my entire life and I'm so frustrated right now.  I just want something to help, be affordable, and not cause such horrible side effects -- not sure if such a thing exists.

Sorry for the long post.  I tried to shorten it as best I could.  Just needed to come here and rant to people that really understand.  Thanks for reading.  ((HUGS)) to all. 

Thanks kazbern for replying to my post. In answer to your quesions: the inflamation is at the terminal ilium, where it keeps returning after 3 bowel resections. I seemed to be doing better on the humira and I'm going to speak to my GI about reapplying for it to see if I can get it with less out of pocket expense. Maybe, since my body rejected the remicade, and I won't even consider trying the 6mp again, since l got so sick from it, it will change the coverage and I could go back on it. Worth a shot.

Haven't explored any alternative approaches, but might try them if the meds don't work out.

Trying to be positive and I'm impressed by many of the glass-half-full attitude some posters on this site seem to be able to follow. But...right now I feel like locking myself in a closet and not adding to my family's already maxed out stress levels of their own. I have a wonderful,caring family, and my husband of 42 years is trying to cope, but there aren't any more spots on the rope to tie a knot on. In case you didn't understand, I'm referring to the quote "when you reach the end of your rope, tie a knot and hang on."

Thanks again for replying. Wishing you well and (hugs) to all.

There are tons of prescription programs out there that will help with payment. Not just the manufacturers. I found a whole list of them when I was first diagnosed with Anklyosing Spondilitis last year. Let me know if you need the list and I'll give you the website to find it.