I started lotronex
#327354 - 03/27/08 08:29 PM
|
|
|
|
|
|
I started taking lotronex last night. My dosage is .5mg in the morning and again at night.
If anyone is interested, I will post my progress here. I know I was curious about the drug and it took me a lot of research and time to accept it was probably the best way to go for me. The "scare" factor was greatly reduced once I got to see how many people benefit greatly from it.
Anyway, let me know. I'd like to help anyone I can by sharing my story.
FYI - I took my first dose last night. I woke up this morning for the first time in a long time without feeling debilitating pain, urgency, cramping and excess gas/bloating. I have had two small BMS, both well formed and not hard to pass. My gut feels calm, which is an odd feeling for me.
Side effects are minimal that I can see. I felt a little gassy today, but nothing bad. Odd sensations in my gut which are hard to describe, like I had to go but couldn't, but without any urgency. A normal poop cramp? When I finally went I just tried to see if I could and I did. No urgency or cramping precipitated my BMS. Also, experience a slight sense of wooziness today, but nothing that hindered my ability to drive, work, rep a client in a hearing, save the world, etc. ;P
Print
Remind Me
Notify Moderator
|
|
|
Wow. Keep us posted. My doc has talked about it for a few years to me, and I've resisted it because of the history of the drug. So glad to hear you're already helped!
--------------------
Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
Print
Remind Me
Notify Moderator
|
|
|
Yes, PLEASE keep us posted!
Print
Remind Me
Notify Moderator
|
|
|
I'll keep my fingers crossed that it continues to work well!! 
--------------------
Taking it one day at a time.....
Print
Remind Me
Notify Moderator
|
Day 2
#327397 - 03/28/08 12:29 PM
|
|
|
|
|
|
I am halfway through Day 2 and still feeling good. Again, woke up with minimal gastro problems. A little bit of gas, however, I ate some cooked veggies with my rice last night and a homemade 'safe' blueberry muffin this morning to ensure I'm getting enough fiber, which could be the culprits of the gas. I had two BMs this morning, both pretty well formed and again not precipitated by any pain.
I am not bloated, no excess gas and no odd pains or sensations today. I feel very calm and relaxed in my gut. I keep waiting for something bad to happen and it just isn't. Also, I stopped all my other meds cold turkey (lomotil, immodium, levin, peppermint caps, etc) as I want to see how this stuff works on its own.
So far so good. Mornings are my worst times, so the fact that two in a row have been decent is making me happy
Print
Remind Me
Notify Moderator
|
|
|
I'm not going to try to sugarcoat the risks of the drug. They're out there and for good reason. However, I found that researching the stats on the scary side effects (ischemic colitis, and death) are relatively low, as in .08% chance.
Something I find interesting is that when the drug first came out, it was expedited through the FDA approval process, the result being that a lot of people were given the drug that should never have received it because the doctors were unaware of the extreme effects it would have. Elderly women complaining of diarrhea were given the drug without being properly screened for causes other than IBS. Some of these women had histories of constipation and intestinal blockage issues and developed the severe, rare complications as a result of the meds.
Therefore, I realize how imperative it is that you get properly diagnosed, that is, rule out ANY other cause of the D before taking lotronex. Also, you shouldn't have a history of any sort of constipation, other than when you purposely stop yourself up because of the D like we D'ers tend to do.
I found a great forum initially started by the folks who spear-headed the fight to bring lotronex back. Most of the D'ers on that board take lotronex and their stories are great to read if you're thinking of starting the drug! The site is www.ibsselfhelp.com.
I'll keep you posted on my progress!
Print
Remind Me
Notify Moderator
|
Re: Day 2
#327415 - 03/28/08 03:55 PM
|
|
|
|
Susie2
Reged: 08/07/06
Posts: 158
Loc: Pomona California
|
|
|
Wow! That works so fast. So many drugs take several weeks to get going in your system. So happy for you. I've had a couple of drugs that really helped me pulled because of a few adverse effects (okay deaths maybe) in a small percentage of patients. In many cases I believe inadequate testing and screening of the patient and careful follow up care could have prevented some of these incidents. Primary docs who are too busy to give proper patient care or refer to specialists, insurances that do not adequately compensate docs, limit patient benefits, and drug company reps that flood docs with free samples and cursory information (not to mention the lunches and goodie bags - I guess the free trips are out) are really part of the problem. And the risks seem much smaller than just walking outside your front door.
Print
Remind Me
Notify Moderator
|
Day 5
#327588 - 03/31/08 09:34 PM
|
|
|
|
|
|
Well, the weekend was a little rough. I think my other meds must have been completely out of my system by Saturday. I was a bit hypersensitive about developing constipation, so I indulged in a lot of cooked veggies Friday night. Saturday, I had some urgency and small cramping sensations followed by about 3 or 4 BMs. Not as bad of D as normal, but not as well formed as the prior 2 days. I had to attend a friend's bday party that night, so to be safe, I took a lomotil before I went.
Sunday, didn't go at all, but didn't feel bloated or constipated. Ate verrrrrrry safe!
Today, Day 5. I woke up a bit more gassy than usual. I attribute that to the fact I didn't have a BM yesterday and my body is not used to being "full" if you know what I mean. I had to drive 2 hours to do a hearing and stopped at a rest stop along the way just to see if I could poo. Success! I was quite amazed! I had a very long, well formed, very solid poo. The best I've done in quite a long time I felt great afterward and no more BMs or gas today.
Overall, I think the lotronex is working, but like anything else, it takes time to see the full effect. The symptoms are getting better every day and while sometimes my body feels a bit weird, it's not altogether a bad feeling. Just some slight abdominal discomfort from time to time which passes quickly. It reminds me of the feeling I get when I start other new meds, like my body is simply adjusting and trying to get used to the new chemicals.
More to come!
Print
Remind Me
Notify Moderator
|
|
Posts
