Getting Remicade..but taking GI over 2 weeks to set up appt??

I am quite angry as of this point (yes its probably also the 50 mg of pred I am on!).  2 mondays ago, my dr and i came to the agreement that nothing is working this time, (little history(i use alot of parenthesis!)i can't lower my pred past 35 mg without flaring, i had a 17 day hospital stay of which ive been out i think 3 weeks now, have tried oral mesalimines, rectal, supps, 6 mp(in past worked but now causes fevers, tried again and caused fever again), antibiotics, diet, etc,), so its time for the big guns such as remicade.  Now 2 mondays ago, i was with him in his office as he told his scheduling nurse to set up with the local hospital my appointment, and the very next day(tuesday), she was supposed to call me with the appointment date and i would then proceed to remicade myself. 

long story short, its now 2 WEEKS past that date, and they STILL havent set up my appt.  when I didn't get a call the day they were supposed to call me, i called late that afternoon and asked what was going on.   they didn't even start the process until i called and by the time they called the hospital.. the person who did the schedules had already left for the day.   now I have called them every single day since.. and each day the dr office keeps saying that hte hospital requires all this paper work...'medical necessity', 'certain dr forms', etc, and that its taking TIME to get this all done because its my first time.    I can't imagine that it would take this long to set this up.  I am in a dire emergency here and losing my colon is very real, plus each day that goes by that i don't get the remicade i have to stay on this high dosage of prednisone, plus I am not working because I am so sick(yippe a new job too).   I have stressed this to my dr office EACH DAY and i have been from very polite, to angry, to yesterday and today, I BEGGED them, literally begged them to please have this before I lose my job, my insurance, and my colon.   Going through another dr would obviously take more time again because i'd have to establish a relationship and what not but if they don't get it done tomorrow i don't think i will have a choice.

Now I guess, before I go off the deep end.. is this taking what I consider an exceedingly long process to JUST GET A FIRST APPT(and who the heck knows when the APPT will even be!!!) normal?  How quick should an EXPERIENCEd dr office, which i know they are, take to get at least an appointment set up for someone who is in an emergency and i am barely out of the hospital as is?  Besides getting a new dr asap(which i am getting either way once i get my first treatment), does anyone have any suggestions as to how i can speed this up?  I have talked to almost every person in his office, i have stressed my situation calmly at first, and then after several days, elevated it(as well as my voice), and then as of this monday, BEGGED them literally.  Today was my birthday(aug 2, happy birthday to me :( ).  i am just so beyond frustrated and depressed. 

Vin. 

P.S.  I don't see my sig so my recent 6 week history is as follows - (severe pancolitis(been on an off the past few 6 years, first flare three years tho) , last colonsocopy(in hospital), showed GI dr the worst colitis hes seen all year, 2 weeks before and while in hospital first week was running constant 101-103 fevers that would not drop with tylonal or other fever reducers(including prednisone), monstrous world ending stomach pain which is mostly improved now unless i hit the 35 mg of pred then it comes back, lost 43 lbs in 5 weeks(gained 10 lb back tho since out of hosp(pred weight, major moon face), was moving bowels 20-25 per day, now down to 5-7 per day but still twinged with blood and increases once at 35 mg of pred.. hmm think thats all we got for now.  Sorry if this is a bit incoherent i haven't really slept much hte past week.  the pred is really starting to effect me mentally. 

 

Post Edited (Vin) : 8/3/2011 1:03:58 AM (GMT-6)

Thanks for the reply lasardo. I guess the other thing that really irked me is that eveyr time i call them to ask for an updated(and its usually at the end of the day, maybe my mistake there), they put me on hold literally for 15 minutes! and I know during that 15 minutes they are actually calling the hospital or checking things which they hadn't done before i called. my long story short left out alot of the irksome details i guess, such as them telling me 4 days in a row.. that the reason the appt wasnt made was because the HOSPITAL needed 'medical necessity'. I told them.. 'you told me that YESTERDAY, so why is that still an issue 4 days later!' and then that the 'hospital hadn't called them back in 3 days'. i was like 'REALLY! well MAYBE, YOU! sholud try calling them again! or maybe you can let me do it!". it was just the same thing day after day after day... so it really looked like there was nothing being done by the office. and i understand that this paper work needs to be done.. but they keep wording it so that it seems like the hospital is the one preventing them from moving forward.. 'the hospital requires this one day.. the next day they require something else, something else today..'... well shouldn't a dr office KNOW what the hospital requires since they do this type of work every single day and im not the first patient to be put on remicade? UGHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! alaskfjaslkjasddljfasklfsdldkf j!! time for a walk!! :).

Vin

It was over three weeks for me from the time the insurance approved the treatment. I don`t think any Dr would deliberately delay your treatment. Maybe you should contact your insurance carrier to make sure they are processing the paperwork. Then contact the hospital or infusion center where you will get the Remicade.
Really sorry you`re having to suffer through this

Scheduled for Friday at 1030 am!

And yes I tried all different ways with the office. The only reason i lost my temper with them was because they consistently did not do anything that they said they were going to do.. and several days in a row for several different major points.. the same people(small office)! I am very good with people and i normally get along very well with everyone including strangers and can usually calm most situations.. but they really just got me going!

Thaanks for the suggestions everyone! Now its time for the next great hope. I am a little nervous about the remi but much more nervous about not getting it. I'll be sure to post my progress. Wish me luck :).

Vin

best of luck mate i think im starting remi in a couple of weeks to, hopefully we both get a speedy remission that lasts for years :)

That is great you are getting the remicade on Friday.  It took about two months for me to get the remicade.  I know there is alot of paper work and you know insurance companies always have to make problems.  Good luck with the infusion(it is nothing to worry about) and hopefully this works for you.

Plugged in right now.  Take your laptop.

I never take tylenol or bene re-infusion.

First day went well. Went to Overlook hospital in NJ(where I traditionally go when i get severe flares), excellent hospital. Got there, my mother drove me for my first treatment as i was unsure how i'd be afterwards driving home but it i ended up being fairly awake even after the benedryl so for the future I'd be able to go myself. After checking in, it took about 10 minutes to get my chair(set up of course in the oncology ward). From that point on, it took about 40 minutes for the nurse to get the paperwork started, vitals checked, hooked into IV, and then start my pre-meds and remicade. They started my dosage very slowly and titrated me upwards every 15-30 minutes. Took about 3 hours for the infusion itself and likely next time it will only take at most 2 hours with no upward titration. The absolute only thing I felt was the sleepiness of the benedryl. Otherwise, no reactions, cold feelings, sweats, etc. I was served a nice lunch in the meantime(hamburger and mashed potatoes with gravy..mmm!). Nurses were absolutely fantastic(and are at this hospital).

Now, I just hope the medication works. I cut my pred down a bit tomorrow and hopefully I can get past the 35 mg sticking point that hit me 2 weeks back.. and that imo will be a clear indication its working or starting to work. Geez so much in my life right now is really riding on this working. If it doesn't, it isn't the end of the world, but man will it just open up a whole slew of problems that aren't directly health related :(. I'll keep postin progress as it inevitably progresses and lets hope for the best!! I am really loooking forward to it helping me as much as its helped all of you in here who have commented and everyone else its helped! Thanks!!!

Vin

I got very sleepy on the benadryl and instead of that I take hydrocrotisone and tylenol before my infusion.  Maybe ask for the hydrocrotisone before the infusion instead of benadryl. Hope this works for you.  I started on it in July 2009 and was completely off the pred by Nov. 2009 with no problems once I was off it.  Good luck.