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Who has been on steroids for more than 3 years? How could you deal w withdrawal symptoms?

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Crohn's Disease
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Posted 12/3/2013 9:26 PM (GMT 0)
Things are becoming worse. Fatigue is unbearable, I can hardly eat. I can't think my adrenal glands would function normally again. I'm taking Ensure, Arcallion to combat fatigue, calcium, D3, L-carnitine and zinc supplements in addition to B complex injections w/o any avail. I started pred 3 years ago and unfortunately withdrew it by introducing Entocort to my system. Going down from 9mg Entocort to 6mg was easy. I went down to 3mg last week but I can't take it anymore. My large intestines started to hurt and I have this nice rectal spasm which doesn't respond to GTN creams. Would I be able again to live w/o steroids? I doubt it. Even my GI in the last visit was very skeptical about my response w/o steroids though he has never shown to me any of his reactions and has always been neutral no matter what flare ups and medicine failures I went through. Should I up the dose again or do what? I can hardly wake up in the morning to go to work and after I return I stay in bed just browsing the net. How can I stop this darn steroid? Thank you.
Posted 12/4/2013 2:46 AM (GMT 0)
It is a very complicated process to get off steroids when you have been on them for such a long time. Is there any chance that you can get the help of an endocrinologist? I know you are suffering, but you should not be changing the dose of the Entocort on your own....you may just complicate things and make it worse.
Posted 12/4/2013 10:34 AM (GMT 0)
Gumby, thank you very much. I couldn't bear it yesterday. I upped the dose again to 6mg. Stiffness all over my backbone and legs made me feel as if I was paralyzed.
Posted 12/4/2013 2:00 PM (GMT 0)
I went through this years ago but with prednisone. I tapered by 5 mg/month until I got to 5 mg. Then I had to get 1 mg tablets and decrease by 1 mg/month. I think you should see an endocrinologist as this is serious business. They may even decide to do an ACTH test to see if you can come off the steroids. I am not steroid dependant, but I have been at it for 33 years. I remember that feeling though, like you had to lay your head down, weak, lethargic, no appetite, just unwell.

I remember when endocort first came out the GI's were excited about it because you weren't supposed to go through all of this as it is absorbed in the bowel. After recent studies, I guess this wasn't the case with everyone.

In my opinion you need to taper slower and you may need a lower dose (like 1 mg tablets) if endocort even comes in anything less than 3mg.

Julia
Posted 12/4/2013 2:03 PM (GMT 0)
I agree with Jill. Tapering slowly by 1mg at a time is your best bet for allowing your body to adjust. I've been on steroids for over 20 years and can't get lower than 2.5mg. Hopefully you can get off of them soon. Hang in there.

Stef
Posted 12/4/2013 9:58 PM (GMT 0)
Julia and Jeff, thank you very much.
Managed to see my GI. He decided I have to go slower as you all said. I have to go back to 4.5 mg for at least 3 weeks. Then, he wants me to go down to 3 mg for 2 or 3 months. I told him I can't bear the withdrawal symptoms and I don't want to come off Entocort. He said I have to. He gave me a 1 injection (a man-made ACTH) to activate the pituitary and adrenal glands. I was even put on an antibiotic and an antihistamine for all the rashes, sinusitis and coughs I got throughout the last week.
Posted 12/5/2013 2:54 AM (GMT 0)
Hi there,

I'm glad you saw your GI and have a plan. In my post I meant to say that I am steroid dependant (typo). I am curious, what is the injection called that he gave you? I would like to look into it, may be an option for me to.

Julia
Posted 12/5/2013 11:40 AM (GMT 0)
Julia, have you really been on steroids for 33 years? It's such a long time. When I was on pred, I developed reversible high blood pressure but it went down to normal after I stopped it. Now, again, with the prolonged use of Entocort my bp is 130/100 but my GI said I won't take any medications to lower it.
Def, I'm glad to share info w you about this injection. It's called Synacthen depot im injections. He prescribed me 1 injection only. The purpose for giving me this injection is to stimulate the production of ACTH. You will find other info in the links below. I took it yesterday and honestly the severe stiffness in my body started to be less but I'm still very weak and drowsy. The antibiotic (clarithromycin) or the antihistamine could be other culprits.
http://www.medicines.org.uk/emc/medicine/133/SPC
http://www.netdoctor.co.uk/liver-and-kidney-problems/medicines/synacthen-depot.html
Hope you find them of any use. Talk to your GI about the injection.
Good luck :) Keep us posted.
Posted 12/11/2013 12:57 AM (GMT 0)
Hi,

When I was diagnosed with crohns 33 years ago prednisone and salofalk were the only meds around to help me.  I was off maybe 3 years here and there in the first 15 years.  Now I am steroid dependent and that's why I wondered about the ACTH shot you are taking.  Is it new? I will certainly ask my GI about it, and if it is an option.  Unfortunately it is also what I have to take if the Lupus flares (remicade and/or Humira induced).  I've never had a problem with my blood pressure, thank goodness.

Julia

 

Posted 12/12/2013 4:23 AM (GMT 0)
I take the one mg pred time release. Works wonderful, makes it so much easier to titrate down. But 30 of those pills chg my ins. $2,550
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