Prednisone withdrawl after 6 years

[BUNKIE10]

Hi,
Just wondering if anyone on this site has been on prednisone for a long time...like 5 years or longer and sucessfully tapered off. I have been trying to taper for 3 years and because of surgeries (for cancer and a gallbladder) have stayed at 5-7mgs. Also with a boost for the surgeries. It took me 2 years to come down from 7mgs. Have stayed at 5 for the last year. I am now going to try again to start a taper.

I have not been diagnosed with Crohns yet but do have another auto immune disease.

I have always felt that prednsione should be used as a drug to fight a flare etc but not necessarly to stay on for life. I am just wondering if it can be done.

 

[Grumbletum]

Hey Bunkie10, hello and a big warm welcome to the forum. Wow, that is a long time to be on the Pred. I was on it for 6 months and found the tapering quite tough.
When you say you've not been diagnosed with Crohn's yet, is there suspicion that you may have it? Like you, I believe that Pred is usually used as an initial treatment to reduce inflammation and symptoms and is tapered when a maintenance medication is identified and started.
What issues have you been having when tapering?

 

[BUNKIE10]

Helen.
Thanks for the reply. They suspect that I have it. Stomach problems and loose stools. I also have some pain. Have an appt coming up with a gastro specialist next month. In the meantime I was trying to see if anyone had been on the dreaded prednisone for a long time. I have another autoimmune disease that is being managed with the steroid but it has been quiet so my endo thought we could try to get me off....very slowly. It has taken me 2 years to come down from 7mgs to 5 without a ton of issues. I had some radiation from breast cancer this past summer. It seemed to piss off my thyroid and they are testing that PLUS the stomach problems have gotten worst. Almost scared to eat some days. After an attack even water sloshes around in there awful. My PCP is the one who kept me on the maintance dose of pred for so long. The endo is the one who thinks I can try to come off. Withdrawl will be no fun but just wondered if anyone had been on a long time in the past. Even a few years or more would help. Thanks.

 

[Grumbletum]

Oh dear, sounds like you've really been through the wars :-( I know there are a few people here who've been on low dose for a while, but cant think of any names at the moment. But I'm pretty sure someone will be along soon. It's tpugh waiting for these appointments, tests results etc.

 

[Grumbletum]

I did a quick forum search and found this tthread that might be of some help.

 

[BUNKIE10]

Grumbletum,
Thanks for that. I am wondering how these people are now. I am not on any other drugs because I can not take them.

 

[Jennifer]

Longest I was on Prednisone was a little over a year. Took about 6 months to taper off it. Do you use 1mg tablets? Tapering down by 1mg at a time may help. Keep us posted.

 

[BUNKIE10]

Jennifer,
Thanks for the reply. I have 5mg and 1mg. I did ok till I got to 6mgs. Then it started to give me fits. I am thinking I could go to 4.5 for a month and see how I do but the other day I missed a dose and it felt like adrenal crisis. I tuffed it out but I was shakin, could hardly walk and the fatigue was awful. I figure I will try it again next week.

 

[Jennifer]

Good luck! Let us know how it goes.

 

[BUNKIE10]

Jennifer how long were you on remicade? Just curious.

 

[Jennifer]

I just started Remicade this year in January. I've had 3 infusions so far. Having my 4th one in April. I started trying new meds to keep me in remission because the 6MP started to affect my liver last year (tried Humira before starting Remicade).

 

[sickofcrohns]

For the record, I was finally able to get off prednisone after 10.5 years this past summer. I've been on Remicade for 9 years as of February.

I think I was on between 20 mg and 50 mg for 2 or so years (up and down repeatedly because of flares), 10 mg for about a year, 5 mg for 3 or so years, and 1 mg for at least 4 years.

Does this make me an old timer?

--> If you are doing a slow taper, you can get a pill chopper from any pharmacy. Then you can go down 1/2 mg or 1/4 mg at a time (chopping the 1 mg pills in half, then in half again, if necessary).

 

[BUNKIE10]

Sickofcrohns - I wish I could take remicade or one of those but had a reaction. Right now they put me back up to 10 for 5 days and then back down to 5 and see if it will offset the missed dose with my adrenals. Thanks for the reply. Gives me hope.