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Hospitalized for 23 days & discharged with Cyclosporine

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Posted 1/3/2010 5:19 AM (GMT 0)
I was hospitalized from Nov 22 to Dec 14. I was having 12 loose BMs per day and my weight dropped slowly from 100 to 88 pounds within 3 months. I felt weak and had no appetite. So I decided to pack a weekender bag on Nov 21 and asked my husband to send me to ER the next day.

I was found dehydrated, admitted and given fluid by I.V. Later I was given Methylprednisone by I.V. 3 times a day. After 5 days I was still having 7 BMs per day. The GI doctor in the hospital thought I was not responding well, and he pushed me to surgery in the following week!
I rejected his suggestion right away because I felt that I was getting better. I had gained some weight and I was not psychologically prepared for surgery yet.
The doctor reluctantly said I could try Cyclosporine, which is a potent immunosuppressant. And he warned me of the possible side effect. I decided that I would try anything out there just to avoid surgery. So I was put on oral Cyclosporine (150 mg 2 times a day) on Dec 8 and was discharged on Dec 14.
I didn't post till now because I wanted to see my progress first. Well, I'm getting better and better. I have tapered off Prednisone (from 40 mg to 20 mg). But I still have 4-8 formed BMs per day. I am supposed to take Cyclosporine for a total of 3 months. After that I don't know what will happen.
Posted 1/3/2010 8:46 AM (GMT 0)
Hi burnabygirl! wow, didn't realise you were that sick and to lose so much weight and go down to 88 lbs...that's super scary!

We don't hearof many who have been put on cyclosporine, I sure hope it works successfully for you.

Have you had any side effects from it? Three months is definitely a long time, is there a tapering process with going off it?

Hope this year has you headed to remission finally and that you start putting back some of those lost pounds.

Thanks for letting us know....please keep us updated as to how you're progressing.

quincy
Posted 1/3/2010 10:45 PM (GMT 0)
     I haven't heard of anyone being on cyclosporine either.  Are you in the U.S.?
Posted 1/3/2010 11:07 PM (GMT 0)
Two members here who took Cyclosporine successfully haven't posted lately: Keith (KS1905) & Malka. You might want to look up their posts. As I recall, Keith got off Cyclosporine & onto 6MP. Malka got off it & went back on sulfasalazine, I think. (Both of them were treated by Dr. Daniel Present & associates at Mt. Sinai Hospital in NY.) Keith wrote that Dr. Present calls Cyclosporine "an A-bomb against UC"! (He is a leading physician/researcher on IBD in the U.S.) Glad to know that it helped you, too-- and wish you continuing progress toward remission. May 2010 bring you good health! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/4/2010 1:19 AM (GMT 0)
Quincy,
I don't have any side effect from Cyclosporine. It seems that I can stop taking it right after 3 months.

Christine,
I live in Vancouver, B.C.,Canada,

Old Hat,
Thank you for letting me know. I was given Cyclosporine by the GI doctors in the hospital. My own GI doctor was out of town and I couldn't even talk to her. I was also seen by an Internal Medicine specialist in the hospital who assured me that Cyclosporine is a safe medication if the patient's blood work is monitored closely. He also said that many of his patients who have received organ transplants use Cyclosporine indefinitely.
Posted 1/6/2010 8:07 PM (GMT 0)
So I have been taking Cyclosporine for 4 weeks now and I'm feeling better and better. I had 4 solid BMs yesterday with just a little urgency. I'm now 98 pounds.
I'm taking 20 mg Prednisone, will further taper to 15 mg this Friday. I also use Salofalk enema nightly.
I still get up once in the middle of the night, though, to use the washroom. I will say I am in full remission if I can sleep through the night without getting up.
Posted 1/6/2010 8:11 PM (GMT 0)
     Is cyclosporine on the same  order as 6MP?  Wonder why my doctor never mentioned it.  He had me on 6MP for seven years which really only worked for the first two years.  After that, I had yearly flares and then became prednisone dependent.   Now on Remicade.
Posted 1/6/2010 8:12 PM (GMT 0)
Great to hear you're improving. Big-gun meds can work....seems you stubborn UC is a challenge for the docs.

I hope once you're tapering the pred you won't have any setbacks.

How long will you be on the cyclosporine?

Thanks for the updates....it's most appreciated.

quincy
Posted 1/6/2010 8:42 PM (GMT 0)
Cyclosporin is an immunosuppressant I'm not sure if it's on the same order as 6MP.
It's used to help treat patients with UC who do not respond to treatment with steroids. It is supposed to induce remission but it's not a maintenance medication.
When I was admitted to the hospital I was put on Methylprednisone I.V. but I was not improving as well as the doctors wanted. So I was suggested to either receiving surgery or taking Cyclosporine. I chose the latter.
I will be taking Cyclosporine for a total of 3 months.
Posted 1/7/2010 1:00 PM (GMT 0)
Good to know that you're doing better now.

My GI doc in the USA had recommended getting on cyclosporine after a time when I didn't respond too well to steroids. It would have involved being in hospital for 2-3 weeks as they need to hook you up with an IV drip and monitor you closely. I didn't do it though as I couldn't take the time off. He had recommended doing this before giving azathioprine a try.
Posted 1/7/2010 7:43 PM (GMT 0)
When the GI doctor in the hospital mentioned Cyclosporine to me for the first time he said I would receive it by I.V. But later he decided to let me take Cyclosporine capsules orally instead. I had bloodwork done everyday in the hospital since taking it. I was discharged a week later. And now I need to return to the hospital for bloodwork weekly.
I had tried Azathioprine twice in 2008 but I couldn't tolerate it. That's why I was put on Cyclosporine this time.
Posted 1/8/2010 12:40 AM (GMT 0)

burnabygirl said...

...I had tried Azathioprine twice in 2008 but I couldn't tolerate it. That's why I was put on Cyclosporine this time.

That's interesting that if you can't tolerate Azathioprine then cyclosporine might still be an option. I wasn't sure about that. So it seems like another treatment worth trying before someone has to get on the next class of meds such as remicade or humira.
Posted 1/8/2010 2:15 AM (GMT 0)
I didn't realize Cyclosporine was a UC med...my dad took it for YEARS for pyoderma gangrenosum...it was the only thing that helped him.  I surely hope it helps you
Posted 3/12/2010 8:14 PM (GMT 0)
So I have finished my 3-month course of Cyclosporine but unfortunately I don't have any good news to post.
I started to have symptoms like urgency and frequent loose BMs (8-10 times a day) after I had tapered off Prednisone completely. I was confirmed steroid-dependent but even when I was on Prednisone I was not 100%.
And now my doctor puts me on 6MP, which is probably my last choice before surgery. In fact, I will be seeing a surgeon later this month to discuss surgery options. Meanwhile I have started a course of low-dose Prednisone to wait for 6MP to kick in, hopefully in 3 months.
Posted 3/12/2010 10:38 PM (GMT 0)
Are you going to try Remicade or Humira before surgery? Sorry to hear you aren't better... :o(
Posted 3/12/2010 11:11 PM (GMT 0)
Remicade and Humira are not covered by my Extended Medicare for the treatment of UC. (But they are covered for Crohn's. I live in Canada). I can't afford them for long term use.
I am 51 years old and surgery doesn't seem to be very scary to me. I will most probably go for it if 6MP fails.
Posted 3/13/2010 12:14 AM (GMT 0)
I'm sorry that your UC is so persistent & nasty. It sounds like your doctor is proceeding logically-- trying to get you off steroids to avoid major side effects. Thanks for updating us! Here's hoping the 6MP will kick in & bring the relief you need. Let us know how you're doing ... all best wishes. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 3/13/2010 12:52 AM (GMT 0)
hi, i really hope the 6mp works for you. because i am in the exact same position.

my doc put me on cyclosporine about a month ago now ( have seen some improvement ) and is planing to start me on 6mp most likely this week after my scope, so that when its time to come off the cyclosporine hopefully the 6mp will be i the full swing of it.

this is my last option pretty much and have been steroid dependant pretty much since i was diagnosed without ever getting to remission, i have just started tapering down from my 50mg pred. and need to get off as i already have bone density issues from being on it for so long :(
Posted 3/13/2010 5:18 AM (GMT 0)
You've definitely been through a rough go for a very long time. Too bad about the cyclosporine not working for you.

Hope the 6MP will give you a break....

Yes, at 51, surgery as your next logica option sounds good if the 6MP bombs.

q
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