Re: Just diagnosed and have questions -- Steroid Warning Network

[ Show ]

Support VoyForums

[ Shrink ]

VoyForums Announcement: Programming and providing support for this service has been a labor of love since 1997. We are one of the few services online who values our users' privacy, and have never sold your information. We have even fought hard to defend your privacy in legal cases; however, we've done it with almost no financial support -- paying out of pocket to continue providing the service. Due to the issues imposed on us by advertisers, we also stopped hosting most ads on the forums many years ago. We hope you appreciate our efforts.

Show your support by donating any amount. (Note: We are still technically a for-profit company, so your contribution is not tax-deductible.) PayPal Acct: Feedback:

Donate to VoyForums (PayPal):

[ Login ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, 2, 3, [4] ]

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Date Posted: 04:08:56 12/05/06 Tue
Author: Ivy (Empathizing!)
Subject: Re: Just diagnosed and have questions
In reply to: Melissa 's message, "Just diagnosed and have questions" on 17:22:35 12/04/06 Mon

Melissa,

I completely understand what you are going through! I have an inflammatory GI problem that requires steroids as well (I also have asthma that requires it too...double whammy). I was given BOTH prednisone AND (for a while) Entecort. For me, the Entecort did not work that well, because every time I tried to wean down on the pred, my GI symptoms would flare up, even with the other med. I went off the Entecort and stayed on the pred. I developed Cushing's quite badly through the 2 yrs I have been on it. I am now on a steroid-sparing drug called 6-mercaptapurine to help me wean down on the steroids. This drug is specifically used for people with steroid dependent Crohn's...among other inflammatory conditions. The 6-mp is basically a chemotherapy drug that acts as a very powerful anti-inflammatory in place of the steroid. I have had great success with it...but it is NOT for everyone!!

As I have been reducing my dose of pred, I have my cortisol levels checked to make sure I am not going to go into crisis. That is the MOST important thing to check! My rheumatologist (who is following my care on steroids/6-mp) just had me go below the body's "normal" 7.5 mg dose...I am now on 7 mg to HOPEFULLY allow my body to wake up on its own.

On 7 mg my body is already starting to lose the Cushing features...I have lost about 10 lbs (since lowering from 10mg to 8 mg), I do not sweat as much (I had the hot flashes opposed to the cold), the facial hair is MUCH less!, the skin cleared up...etc. It did take about a month on 8mg dose before I noticed a major change in anything, but I had been on such high doses for a 2 years! I just lowered to 7 mg 8 days ago, so no changes yet for me on this dose :)

Please do not forget that Entecort is NOT an even match in dosing as cortisol...meaning, because you are on 6 of entecort does not mean your body is only getting 6 of cortisol...it could be 60 mg in your body as coritsol (or something more then the body's own dosing system).

One of my docs had told me that if I do not stop flaring up my asthma/stomach when weaning I will have to live with the consequences of steroids...so I found another doc who was willing to try something new. There are more and more meds out there being used to treat Crohn's INSTEAD of steroids. Maybe a GI doc would know more...

Please feel free to email me on here or privately if you want to chat more!

Ivy :)

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

Re: Just diagnosed and have questions -- Judy K, 05:55:44 12/05/06 Tue

Re: Just diagnosed and have questions -- Melissa, 18:45:23 12/05/06 Tue