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Posted 7/10/2013 1:49 PM (GMT 0)
So who's tried this med? I've been sort of wanting to give it a go for awhile now, but my GI seems very hesitant- he says it's very toxic to one's liver, it requires a hospital stay to administer the drug & check labs.... I'm doing poorly, & want to try everything before the big S, surgery. Please, anyone use it? How did it work? Did you go inpatient for the med? Did it put you into any sort of remission???
Posted 7/10/2013 3:22 PM (GMT 0)
I've been on it twice, no problems but you do have to go for weekly blood tests.

It got me into remission twice but you will need a maintenance drug to take over because Cyclosporine is not a maintenance drug. Mine was 6-mp.

We get about a half dose of what a transplant patient would be receiving so a lot of what you read is about the effects on Transplant patients not IBD patients and they stay on it for life, we only stay on it for 3-6 months.

Go to a GI who has experience with Cyclosporine and a hospital that does this on a regular basis. It would probably be in a major city and a teaching/university hospital and that would be the same type of hospital that I'd insist on going to for surgery.

I only had a few side-effects, I had the shakes a little bit in my hands (no big deal), it was very minimal and some excess hair growth (opposite of Predisone effects).

Cyclosporine runs off the cholesterol in your body, my cholesterol was so low the first time they couldn't give me a full dose of Cyclosporine...I was staying at a GI Ward at a major hospital in the US and they brought me in take out menus from local restaurants and told me to order food with lots of cholesterol in it to get my levels up. I find it very ironic.

I'm on Simponi right now, is that an option for you? I had almost instant results the first week, this week I am suffering but I'm due for my second dose this coming weekend. It's worked so much better for me than Humira ever did.
Posted 7/10/2013 3:23 PM (GMT 0)
You should probably expect to stay at the hospital 2-3 weeks for Cyclosporine. Even if they tell you 10 days, both my stays were never that short.
Posted 7/10/2013 4:22 PM (GMT 0)
I was on it at one time. The initial set up was a 7 day hospital stay where it was given intravenously and then I was sent home on the oral form. I was in Mt. Sinai in NYC for this.

It halted my UC in its tracks. No blood, mucus, urgency and I had formed stools for three months and then it stopped working. Even while I was still taking the pills....which are like huge horse pills and they smell awful! Then I flared worse than ever after that.

I really hated that drug and I have been on all of them. It gave me horrible migraine headaches and I was nauseated all the time. I grew freakin facial hair worse than prednisone. I wouldn't recommend cyclosporine to anyone just based on my personal experience but I am sure other people it didn't bother. It's just really strong and nasty. I regret ever trying it but my GI doc at the time really pushed it on me and I was trying to avoid surgery.
Posted 7/10/2013 4:34 PM (GMT 0)
Thank you! But, so after your hospital stays, then you had labs done every week? And for how long? I am on Imuran, 150mgs/day, & have been on it for about 3-4 years now. And Humira, which is losing it's punch. The side effects do freak me out... the facial hair?? No thanks. The shakiness? Ugh. I wonder if you're experiencs is typical, ByeByeUC- works great, then just quits. And ks, if cyclosporine worked great, why are you now on SImponi? Same thing, it just quit? Interesting... My cholesterol is low too...
Posted 7/10/2013 5:26 PM (GMT 0)
Eva,

To answer your question: If I am going back into the hospital then I'm going back in to be cured (surgery).

I didn't mind the Cyclosporine but it's to save your colon, I'm really not interested in continuing this UC odyssey anymore but I want to do it on my own terms when I have more time to recover and right now I don't feel like taking time out of my life to do that, thinking it will be late Fall or Winter. Simponi is to get me through until then.
Posted 7/10/2013 5:29 PM (GMT 0)
Eva,

My labs were every week until I stopped the Cyclosporine, I'm sure you could stretch that out if you had to.
Posted 7/10/2013 5:49 PM (GMT 0)
I don't remember how often my labs were but I don't think they were every week.

I remember my GI saying its a 50/50 chance that it would put me in a solid remission. I mean, it did work but for me it was a huge waste of time because it didn't keep me in remission. I just don't think there is any longevity to this method of treatment. It is ok if you need to get stabilized ASAP like if you were headed for surgery. After the cyclosporine I went to Remicade. That was a bust too. I just didn't respond to the meds. Surgery was inevitable for me. But at least I can say I tired.
Posted 7/10/2013 5:51 PM (GMT 0)
I totally hear what you're saying, ks- I feel the same, really. Not sure if I feel like dealing with any med, but feel like I ought to give it a try. I've already met with surgeons 3-4x now, and have another appt. in September.. I had wanted to "see how the summer went".  Who knows, I just did a Humira shot this AM, so maybe things will settle down... And yeah, cyclosporine is considered a rescue med, to get one in decent enough shape to undergo surgery. Certainly not something used regularly! Maybe Simponi, I've already gone thru Remicade & Humira! I'm getting a little tired of going from biologic to biologic also... Did the cyclosporine put you into remission, ks?

PS- wow Marianne! You did try.... it's tiring though, isn't it? The constant trying... and nothing ever working for more than a year or so! I think that's what's really bringing me down lately, I'm just beat, done, blah...

Posted 7/10/2013 5:57 PM (GMT 0)
I forgot to mention that it stopped working as I was tapering it. You have to taper down from it like prednisone. You cannot stop cold turkey.

I know how you feel. It's so frustrating when med after med fails. I really am so happy that I had the j pouch surgery. It was the only thing that actually worked!!
Posted 7/10/2013 7:38 PM (GMT 0)
Yes it put me in Remission both times, usually within about 3 weeks. I don't remember tapering the Cyclosporine but that was a few years ago. Cyclosporine got me through some really tough flares.... my first flare I lost about 60 lbs and was basically bed-ridden.
Posted 7/10/2013 9:20 PM (GMT 0)
Eva,

I've been on all of these medications but if it was my decision I'd probably go for the Simponi before I'd go for the Cyclosporine just because of the hospital stay that is involved with the Cyclosporine.

It's the decision(Simponi) that I made with my GI after a consultation, he's been pushing me for years to really consider surgery (he told me it will feel like the monster has been removed from my body and I'll feel so much better). When I go into the hospital again I am leaving my colon at the hospital.

He told me if the Humira didn't work then Cimzia probably wouldn't be that affective either. I'm pretty happy with the Simponi so far but I know that you don't want any more biologicals.
Posted 7/10/2013 10:12 PM (GMT 0)
It's not that I don't want any more biologics....I was headed for surgery prior to trying Remicade 4 years back, & that kept me going. Then it failed, so Humira is keeping me going... it's losing it's punch. I'm just tired of the med merry-go-round as a whole. But I'd use another biologic, sure, why not? In my experience, each new one works a bit better than the last one, & keeps me puttering along for another 2 years or so. Meanwhile, I'm hoping they find a cure, or some fabulous new med, that will put me into remission! My GI has also been pushing surgery for years now- as has every surgeon I've talked with. Not so much pushing surgery, but definitely saying I'm a great candidate, I'll feel so much better, gain weight, no more meds, etc. I've been kind of down lately, which is not like me, & I know it's because accidents have been increasing, lack of bowel control, expensive somewhat dangerous meds not doing much... whatever! At least it's summer! :-)   I'm not a j-pouch candidate, unfortunately... and I know that a perm ileo is great, but it's a BIG decision. A huge body changing surgery. Stupid UC. F it!
Posted 7/10/2013 10:41 PM (GMT 0)
Eva,

If you don't mind me asking why can't you have a J-pouch? They've never told me that I couldn't, they said that I'd probably be a good candidate and at one point I almost had a 1-step Laproscopic J-pouch.

I do know that between 10-15% of J-pouches fail over time and need to be removed.
Posted 7/11/2013 2:46 AM (GMT 0)
Oh Eva... when I saw the subject of this post I thought to myself "just get surgery already!!". I know you were so close to pulling the trigger earlier this year... Cyclosporine is a toxic, toxic drug. It's like prednisone on steroids (haha, sorry, couldn't resist). If you want to stay on the med merry go round, try Simponi or vedolizumab or Xeljanz. But if you're at a point where you think cyclosporine is your best bet, then just go for the surgery already. Any relief from cyclosporine is going to be temporary, but the side effects can be forever.

And ks, pouch failure rates for experienced surgeons are more like 5%. My surgeon's personal pouch failure rate is about 3%.
Posted 7/11/2013 11:13 AM (GMT 0)

ks1905 said...
I do know that between 10-15% of J-pouches fail over time and need to be removed.

Just curious where that statistic came from. I understand its more like 5% from what I have read. This procedure is being done more and more and with an experienced surgoen its highly successful.
Posted 7/11/2013 11:26 AM (GMT 0)
ByeByeUC


You post good things about the surgery but also have difficulty with iron, is that from the surgery? Do you have any regrets about having the surgery? Or has it gotten your life back. I am asking because I am personally scared of the meds (and have tried anything I can think of to avoid them) but I have run out of options; and sometimes, I think that it would be better having the surgery rather than destroying your body on the meds.

Having the surgery I presume that you go more than 1-2 times a day, and you still have to judge what you eat, also I am not sure how your body controls it, does it feel the same as when you had your rectum?

Thanks bye bye
Posted 7/11/2013 12:18 PM (GMT 0)

ByeByeUC said...

ks1905 said...
I do know that between 10-15% of J-pouches fail over time and need to be removed.

Just curious where that statistic came from. I understand its more like 5% from what I have read. This procedure is being done more and more and with an experienced surgoen its highly successful.

It was having to take medicine because of chronic pouchitis and mis-diagnose when it's really Chrons. I probably used the wrong term "fail" and should have said problems with their pouches.
Posted 7/11/2013 2:00 PM (GMT 0)
I know, I know... just get it done already! I am so close.. THIS time, ha! I'm not a jpouch candidate due to a long standing fistula, which developed from an abscess. Out of the 3 surgeons I've spoken with, 2 have said they won't do a jpouch on someone with fistulas, because generally the presence of one signifies Crohns. But, my biopsies & such do indicate UC. And really, I can't face more than one surgery! I suppose I could try fistula repair, but when I spoke with a surgeon about that procedure, she said they wouldn't do it on someone who's actively flaring, as inflamed tissue won't heal correctly. I'm sort of screwed! I feel so crappy right now, I just want to sleep for days- I am going to call my GI tomorrow, see what he thinks... which will be, schedule surgery ASAP. I'd like to wait 'til September if possible, 'til my daughter is back in school. It makes scheduling a lot easier.
Posted 7/11/2013 2:10 PM (GMT 0)
Well, Eva Lou, we have PM'd so I feel for you as I was in your boat. As you know, I was and still am a jpouch candidate but I literally have no interest in trading my two and a half month old, perfect functioning end ileo for a jpouch, even with those stats that are cited. I simply do not want to have to even consider things like pouchitis, incontinence or urgency- with this end ileo I can usually go many hours before feeling any need to empty, but if It isn't practical for some reason, I can go on for six hours or so if need be, and that is a wonderful feeling. By then one obviously would have to pee anyway. I have no pain any more whatsoever. As far as body changing- no one really knows unless you strip naked. I will say that just gwo and a half minths since surgery, I hardly even think if it anymore lol- I say this in total, 100% seriousness since you know how hystically scared I was of this when I faced the decision. i knkw that is true for the vast majority of ostomates and jpouchers alike.

If you can't have a jpouch - have you looked into whether you would be a candidate for a k-pouch or BCIR? If for some reason I ever have to give up my end ileo I think a BCIR might be my first choice even though I will be a jpouch candidate for ten years or so from my understanding. I think jpouch is fantastic for many but it isn't the only option and not the best option for everyone's lifestyle even- so it's great that there a so many surgical options out there.

Post Edited (Probiotic) : 7/11/2013 8:15:37 AM (GMT-6)

Posted 7/11/2013 2:35 PM (GMT 0)

Hellokitty said...
ByeByeUC


You post good things about the surgery but also have difficulty with iron, is that from the surgery? Do you have any regrets about having the surgery? Or has it gotten your life back. I am asking because I am personally scared of the meds (and have tried anything I can think of to avoid them) but I have run out of options; and sometimes, I think that it would be better having the surgery rather than destroying your body on the meds.

Having the surgery I presume that you go more than 1-2 times a day, and you still have to judge what you eat, also I am not sure how your body controls it, does it feel the same as when you had your rectum?

Thanks bye bye

Hi Hellokitty,
My only regret is not having the surgery sooner but like everyone else I was scared and I wanted to try everything first.

I go to the bathroom 4 to 6x a day on average. There is no urgency. Just a feeling of being full. Just like you know your bladder is full. You just go. It's kind of hard to explain. It's not like the feeling with a colon and rectum. It's actually much quicker this way! I usually empty when I have to go pee anyway so I'm really not making any extra trips to the bathroom.

I can eat what ever I want. There are no wrong foods for me to eat. Some foods (like chocolate) may make me go more but I still eat them. After all those years dealing with UC, I don't care....I am eating! I try to eat healthy and I do work out every day.

My anemia issues are improving. In fact I just saw my hematologist yesterday. My hemoglobin and ferritin are up again. It's been three years since my first surgery and being depleted from UC all those years, it has finally taken me this long to catch up. I had to have some iron infusions to get me over that hump but now that my body is healed I am holding my own. It's been a long road.

Best of luck to you with your decisions...I know it's tough. But I would recommend surgery for anyone who has failed all the meds and has that low quality of life. It definitely has given me my life back.
Posted 7/11/2013 2:48 PM (GMT 0)
Thanks, pro- you've been an inspiration! I haven't lookend into kpouch or BCIR- there are so few surgeons who do those, & I don't believe any in my area. Plus, I really do like the ease of an ileo, surgically speaking- not to much can go wrong! I'm so glad you like it so much, I do know it was a major freakout for you, going into it! Currently, my quality of life sucks- I've been having daily accidents for like a week now- not too long, but... I don't like where I'm headed! I am eating a lot of fruit, it being summer & all... but we all know you can find any excuse, & really, it's just the disease.

Posted 7/11/2013 3:27 PM (GMT 0)
ByeByeUC, I was curious about your jpouch. You said you typically empty out the jpouch 4-6 times per day with no urgency, when you pee. So, are your bms spread randomly throughout a 24 hour period (even at night)? Or are they more like my uc, where I got a lot of times all at once, first thing in the morning, and then don't have to go for the rest of the day? As for me and my current uc, on a typical day, I have 2-3 bms within 2 hours of waking up, and then I am free from having to poop again for another 24 hours.
Posted 7/11/2013 3:37 PM (GMT 0)
Any time, Eva Lou. I will say hands down, without any doubts whatsoever, if I could be outin a time machine back to having my colon again, but knowing what I know now about surgery, and ai knew a total cure would exist for UC in say two years, if I hung in suffering for another year, I would STILL choose surgery. If the wonder cure was coming in a year, it might be a toss up for me. It's a silly hypothetical though as the isnt going to be a wonder cure, but rather just a series of gradually more benign (side effects) biological drugs with less systemic effects, that work for some and not others, that take a few years to be approved, that stop working after a certain time, etc etc.. In my case, I was also wanting to try everything and anything but my preference was for things that have evolved biologically with humans (and primates) for millions of years- eg worms and fecal bacteria- by contrast, these biotech drugs are rather creepy to me as one can never know if there are delayed side effects after decades or something. But I always felt yucky on drugs like remi and humira (and imuran for that matter) with all sorts of side effects... I consider all that stuff toxic garbage. Whenever the is a TV ad for humira or smething on the TV I always shout "evildoers!" At the TV lol and my wife, who hated me being on those drugs, will laugh.
Posted 7/11/2013 4:15 PM (GMT 0)
If you find a medicine that makes you feel good for a long time, don't get surgery. Perhaps Simponi is worth a try for you? The risks of failed surgery are far far higher than any serious side effects of biologic medicines. That's just my two cents.
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