Crohn's Disease Forum » Treatment » Prednisone AGAIN


09-13-2010, 01:27 AM   #1
VintageAnn
 
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Location: Fresno, California
Prednisone AGAIN

Hi everyone,

My crohn's disease has become like the uncle that tells really bad jokes at the dinner table and comes to stay for the weekend and 10 years later he's still here. His name is uncle D

I had to stop Remicade due to all of the infections and flu like symptoms I had for 18 months. With the change of Remicade came a change of GI doctors.

My new GI doctor is a dream come true. She listens and is attentive and proactive. She believed I was allergic to the mouse protein in Remicade so switched me to Humira. I have had my first and second loading dose and take my first regular dose tomorrow.

After four days on the Humira all of my flu like symptoms were gone and for the first time in 18 months I could move freely and felt so much better. I was laying in bed a few days after my second loading dose and felt the familiar girgle in the spot under my left rib cage that is a subtle signal my body gives off that says get ready Ann Uncle D is coming for a nice long visit.

Sure enough within 24 hours D was here with a vengeance. My first line of defense of course if denial. I talked myself into it being cause by something I ate or a stomach virus. Even though I knew it was Uncle D. I never have that gurgle any other time. So After a couple days of 7-12 D's it calmed downs. I got a few days reprieve and it was back again on Thursday. So I broke down and called my GI.

What was weird was it was the actual GI that called me back. I never once talked to my old GI on the phone, I always had to go through his nurse. So she said she thinks it is probably just the switch of medication and she wanted to do a short taper of 3-4 weeks of PREDNISONE. I have been off prednisone for about 16 months and finally have my face back, I have a neck that is recognizable as an actual neck my camel hump is gone I have taken 40 pounds of the 75 I gained from being on Prednisone for two years before.

I never talk about my disease because I'm tired of Uncle D and really just want him to move out. But for the first time in my life I am telling the world well at least everyone on this site that I am so bummed, disappointed and down right disillusioned.

I started 40 mg. of Prednisone yesterday. Within hours I was feeling like I was coming out of my skin. The old familiar feeling of anxiety, sweating and anger all flooded back. I can feel my heart beating in my chest and just generally feel pissed off.

I am now in the "what if" stage today going through all the if scenarios that I hate doing but can't stop the racing thoughts. The last bad flare I had it took 60 to 80 mg. to get it calmed down.

The worst part. And I know I am ranting but I can't help it. I am a fraud investigator and I travel a lot by car all over California. When I am in a flare like this my life sucks trying to make a contingency plan for ever aspect of my life due to Uncle D. I go into strangers homes that are not the most savory characters in the world and I DON'T want to use their bathroom. So just imagine what I try to figure out. It's mind boggling.

So i'm asking I guess for someone to tell me eventually it's gonna be alright and things will go back to normal soon etc.... etc... It's nice to have a place to go where people understand me and Uncle D. I went for so such a long time, over 18 months with no Uncle D.

Thanks,

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

Currently on Humira

Past treatments:

Asacol
Colazol
Pentasa
6-MP
Remicade
Cipro
Flagyl
And lots and lots of the devil drug PREDNISONE

"Don't let a disease define who you are"
09-13-2010, 02:35 AM   #2
Brindle
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Join Date: Aug 2010
Hi Ann,


Ya gotta love when uninvited relatives stop in for a visit, NOT!!!! Sorry that this has happened. I think the only way to handle your Uncle D is with tough love. lol Okay so he is here and thinking he is sticking round for a while, news flash!!!! Time to go!!! Hopefully the short course of Pred will let him know he has wore out his welcome at your place and it is time to move along. All joking aside, Hang tough and try to keep your chin up. It sounds like your new GI doc is one of the very vested Drs that listens to your concerns and addresses the issues. Hope that the Humira also intimidates Uncle D into leaving and not coming back.

Best of Luck,
Brindle
09-13-2010, 02:39 AM   #3
Entchen
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Hi Ann: It's going to be all right and things will be better soon. Hang in there. What a cool job you have -- but wow, I wouldn't want to use those bathrooms during that job, either!

I'm sorry you are so disappointed right now. It's so hard when there is no non-awful way to get rid of the inflammation. I hope that the shorter taper will work for you and that you'll be soon off the med again without needing to go to a higher dose.

I'm awake at 1:30 a.m. because of Pred / Crohn's (mostly Pred) -- heart pounding, stomach upset and hurting, indigestion, sore arms, trying to convince my mind that I'm not actually anxious but only having a physiological reaction, you name it. So, frankly, your post (it was hardly a rant, for the record!) reminded me that I'm not alone, either, although I've been feeling that way today. As Red Green would say, we're all in this together.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
09-13-2010, 02:57 AM   #4
DustyKat
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Hey Ann,

Oh no, I'm so sorry you are going through this. I don't have any words of wisdom to offer but just want to say you are in my thoughts and I hope more than anything that things settle down for you.......................



Take care mate,
Dusty
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09-13-2010, 04:52 AM   #5
seaofdreams
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I sometimes wonder which is worse, the symptoms of the flare or the side effects of the Prednisone.
For the last week I've been on what feels like the most awful emotional rollercoaster. Anxiety, insomnia, depression but I'm trying to keep in mind that it's just a side effect of this horrible medication and that I'm going to feel so much better in a few weeks when I'm off it again.
I hope "Uncle D" lets up for you soon and you can get some normality back into your life. All the best (:
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~ Nicci

"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
Supplements: Folic Acid|Vitamin D|B12|Iron Complex|Magnesium Complex|Calcium|
09-13-2010, 07:47 AM   #6
Crohn's 35
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Hi Ann, I was exactly like you, I was allergic terribly to the Remicade, and then went to Humira and it worked on and off for 6 months and then petered out. I didnt go on the Pred until after Humira didn't work. I am one of those people who try something on its own when new because how do you know if it is going to work or not or know where side effects are coming from. Prednisone does work but it is a master of masking symptoms and lots of sides come with it and they are not nice. Hopefully your new Gi (a female too!) will only have you on a short taper. Prednisone is not a good drug for anyone to be on and if you are not on high amounts of Calcium and Vitamin d3 you could pay a bigger price. Osteo, thinning of your skin and feeling like you can whiz like crazy. Best to take them in the Am with food. The D can be controlled another way, with Questran, far off better than Prednisone. If Humira is going to work it should be enough but I know the D also ruins the nutrition part of our bodies so hopefully you are on good vitmins. it sucks but talk to your Gi about Questran, it may help and get off the pred, I am on 15mg and cant wait to get off it!
09-13-2010, 10:21 AM   #7
Astra
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Hiya Ann

so sorry you're back on the Dreaded One, and so am I! Bloody thing, only just got rid of the last lot of withdrawal symptoms, here I am again, wizzing me tits off!
Stuck between the Devil and the Deep Blue Sea!
Doc gave me a choice, A&E or Pred?
I think they call it Hobson's Choice, lol!
So I'm riding this storm again and totally ignoring all the jittery speedy stuff and just getting on with it, til it's gone. Pissed off tho cos I can't stop eating! Only just got rid of the Spacehopper look, it's sooooooooooooooo last season!
I wish you lotsa luck and you'll be ok
xxxxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

09-13-2010, 10:28 AM   #8
Sue-2009
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Darned Uncle D...stinks when he comes in town! Hope you get some relief..Sue
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09-14-2010, 02:54 AM   #9
VintageAnn
 
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Hi Everyone,

Thanks you so much for the support. I have never talked to another person who has Crohn's disease so your responses were something else. To know that there are other people that go through what I got through made me feel sad because I don't wish this lifestyle on anyone in this world.

I took my third dose of Humira today and am on my third day of Prednisone. So far Uncle D is still on vacation. I will take all of your advise and suggestions to heart and thank you so much for them.

We had a death in our family today. One of my husbands favorite aunts passed away unexpectedly she just turned 80 years old and was ten days shy of her 60th wedding anniversary. God showed his compassion and true grace in her death. She had a massive stroke and passed away peacefully. A woman of deep faith. So although it's sad she's passed it's a comfort to know she's being well taken care of.

So again. Thank you so much for your responses and advice and compassionate.

Ann
10-01-2010, 07:40 AM   #10
VintageAnn
 
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So I made it all the way down to 10 mg. and was taking that for about 5 days and then Uncle D came calling. So back up to 40 mg. and my appointment with the GI was for October 19th but they moved it to this coming Tuesday. Other than the D and the usual right side pain and never ending gurgling noises I feel really good.

I feel good but I'm also scared. I'm taking the humira and I started that on August 16fth. I couldn't tolerate Remicade. If the Humira doesn't work I'm not sure what to do next. It's a feeling of although I know i'm not alone I feel really alone. I feel like I'm fighting a good fight but I'm tired mentally, physically and emotionally. It takes such a tole after a while.

Just thought I'd have a little pity party for myself.

Thanks guys for your support.

Ann
10-01-2010, 07:49 AM   #11
DustyKat
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Aww that sucks Ann. I hope you can sort something with the doc regarding the Humira and if it doesn't work BUT I'm keeping my fingers and toes crossed that it does!!!

Keep us posted! and hey I don't mind a good pity party!

Dusty.
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