10-07-2010, 04:33 AM   #1
VintageAnn's Avatar
Join Date: Aug 2010
Location: Fresno, California
I need a hug

So here is the condensed version:

Remicade 18 months- joint and muscle pain and generally felt awful and a GI who kept telling me that I had fibromyalgia along with the reumatologist he sent me to and then the pain management doctor the reumatologist sent me to all agreed. Yep you have classic fibrmyalgia. I played along. Took their drugs that never came close to helping me.

I fired all those doctors - I found a new GI that is straight from heaven. Within the first thirty seconds of my first visit she told me I didn't have fibromyalgia at all. I was allergic to the mouse protien in the remicade. She switched me to humira and I started that on august 16th. So I have had the loading doses and two oth shots two weeks apart. Somewhere in there I flared and she put me on a short prednisone taper 40 mg. For 5 day and then taper 10 mg. Every five days. I got down to 10 mgand flared again. So back up to 40 for five days and I have been at 30 for two days.

I saw my GI yesterday and she added 6-MP to the mix. She said it helps the humira work better. I was on 6-MP for a a little over two years a couple of years ago unti it caused my liver to become toxic. I go back for a follow up to in 4 weeks and have to have a CBC every two weeks.

If I flare again she wants to do a colonoscopy. She want to do it at the hospital with an anesthesiologist so I can be put all the way under. She said that under general anesthesia she can get a better more comprehensive view if things. I like this idea because I wasn't all the way out with the last one.

Coming off the prednisone sucks. But, the D is gone. Still have right side pain and am looking forward to my Humira shot on Monday.

These last two years have been exhausting and I feel kind of down. I follow all the rules and still can't seem to get a good handle on things.

Thanks for listening,

Crohn's Disease official diagnosis 2000, problems prior to diagnosis began in my teens

Currently on Humira

Past treatments:

And lots and lots of the devil drug PREDNISONE

"Don't let a disease define who you are"
10-07-2010, 04:38 AM   #2
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Oh Ann I hope and pray that things settle down for you and you can find some lasting relief. It's nice to hear though that you have a GI that you trust and have faith in..............

Mum of 2 kids with Crohn's.
10-07-2010, 04:56 AM   #3
To save time...Ask Dusty!
Dexky's Avatar
Join Date: May 2010
Location: Kentucky

My Support Groups:
Sorry for you Ann!! I'm always amazed by some of the sufferers' abilities to laugh through what must be pure hell. You are one of those whose upbeat and zany comments makes me forget why you came here in the first place. I truly hope you find remission, you deserve it!!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
10-07-2010, 05:20 AM   #4
Join Date: Oct 2010

Wish I could give you a big 'ol hug although I know we don't know one another. It sounds like you have been through so much. I am so glad you have a good GI... that can make all the difference. I am so new to this so I don't know how much anything I say means but I am finding a great attitude and sense of humor seem to get me through the tough times!
Taking NOW:
Hydrocodone 10/500 as needed
No Crohn's meds right now, hopefully in remission

Use to take but didn't work:
Pentasa 2 pills 4x
Flagyl (gave me horrible thrush! Blech)
Entocort EC 3 pills in the morning (3 mg each)
Prednisone 3 pills in the morning (10 mg each)

10-07-2010, 07:38 AM   #5
Crohn's 35
Inactive Account
Join Date: Oct 2009
Hi Ann, I know how you feel I am almost in the same boat, Remicade was bad for me, 6mp within a week my liver was toxic, Humira petered out and metho made me ill and never worked, and there is no Cimzia here and waiting on a new Gi and surgeon. It is frustrating and I know how hard it is to see othere do well on a drug and no matter how much we tweak it , still nothing. The biologics work for some the percentage is not that high to everyone, and I hate Prednisone, it has done some damage to me that I dont think will repair itself. I get scared from time to time too, but they say as you get older it gets easier. Like I wanna wait til I am 80 to feel better? Big hugs to you, hang in there, hope the Humira works for you. Take it one day at a time ok. (((hugs)))
10-08-2010, 03:17 AM   #6
VintageAnn's Avatar
Join Date: Aug 2010
Location: Fresno, California
Pen i'm already old so this should be a breeze by now! I've been sea sick all day today without the benefit of the sea. I feel robbed! The nausea medication doesn't work! I wish they would give me something that just say "knock out" pills. Take one whenever you don't want to deal. Take one, knock yourself out for a few hours and wake up still in the same spot but able to brag about being able to legally knock yourself out. It a stretch I know but it's how my head works.

Thanks Newt for the kind words and virtual hug. I needed that!

Dex, if I didn't have a sense of humor and just a bubble off plumb I would certainly go quite insane.

Dusty, you always know just what to say.

I have police chaplain duty this weekend so me and my buddies, the father, son, and holy spirit will be in constant contact over the course of the weekend. I'm hoping for something between a burning bush and sermon on a mount. The only mount I have around close by is a horse but since he made the animals I'm sure he can handle that no problem. I'll keep you updated on miracles and such.

Love my fellow cronies - you're my peeps
10-08-2010, 04:15 AM   #7
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
I'll keep you updated on miracles and such.
Well that's good to hear 'cause I wouldn't want to miss out!

Take care Ann and know that you will be in my thoughts.


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