HealingWell
Search Close Search
☰

Any other meds i should try?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/5/2013 3:01 PM (GMT 0)
So i'm very frustrated.. i've been through a lot of meds and they all just seem to stop working after some time.. only thing which works for me is prednisone but maybe theres some medicine that i dont know of yet that i havent tried..
I've tried
Mesalamine (Asacol, Asacol HD, Lialda, Apriso, Rowasa, Canasa etc)
Sulfazalazine (worked but not completely and experienced nausea and vomiting from it)
6 MP (caused jaunice)
Remicade (5th infusion, still bleeding)
Flagyl (When i was hospitalized they gave me this antibiotic)

Any med suggestions would be appreciated.
Posted 7/5/2013 3:04 PM (GMT 0)
It's all over dude! there's nothing else in this century. I have similar issues.

It's time to go see the ..... well you know who.
Posted 7/5/2013 3:34 PM (GMT 0)
You could try LDN or Humira or Cimzia. You could also try dietary changes or prednisone but you would need to have a maintenance med to keep you stable when you get off of prednisone. Maybe you could try a different antibiotic or triple antibiotic therapy. Please read the forum resources thread, it may give you some ideas.
Posted 7/5/2013 3:37 PM (GMT 0)
You have been through most of the "traditional" medicines:

You could always try:

Azathioprine – Similar to 6-MP, but changing from 6-MP to azathioprine or vice versa can sometimes reduce some of the reactions to these medications

Humira or Simponi -- I have heard that Remicade usually works better than these two for UC but there are some that I have heard helped by either of these and not Remicade

Probiotics such as VSL#3 or Mutaflor -- Not much downside in trying this other than the cost. If you can get a prescription for VSL#3, this sometimes helps with the costs.

Fecal transplant -- If you have someone that is willing to try this with you. It of course has its own risks.

Nicotine therapy -- I realize this is a sensitive topic on this forum; Some studies have shown that nicotine patches help, while others show that it is something in the smoke/cigarette in addition to the nicotine

There are a number of herbal or other alternate remedies but there is not much scientific evidence to back them up for UC, mostly anecdotal evidence: Fish oil, Boswellia, Tumeric, Clay, etc

LDN – I do not know much about this but have seen it discussed on this forum a lot

Diets -- SCD, Paleo

Helminthic therapy using hookworm and/or whipworm
Posted 7/5/2013 3:59 PM (GMT 0)
I didn't see any rectal meds listed...they are not fun but they are affective. Steroid Enemas or foams.

You could try Uceris, it steroid but has less side-effects than Predisone but it is also not as affective as Pred.

What is your dosage of Remicade and how often do you get your infusions? You can get double or triple doses and as often as 6 weeks. Remicade only worked for me at 6 weeks and 10 mgs/kg

I just started Simponi and have only taken the loading dose so far (June 29th) but it's off to a good start. I'm looking forward to my next dose (July 13th), all my bleeding is gone and things have firmed up but frequency is still an issue for me.

The really big guns are Cyclosporine and Tysabri but at that point you should probably consider surgery as an option.

In the last 4 months the FDA has approved 3 new meds for UC; Uceris, Cimzia, and Simponi. I've had UC for almost 10 years and until recently there were not many new medicines approved for UC so I am very optimistic that things are headed in the right direction with new biologicals and gene sequencing.
Posted 7/5/2013 4:00 PM (GMT 0)
I don't see Colazal (generic is Balsalazide) in your list.
I doubt it will be your miracle drug but just mentioning it since you asked.
It is designed to release in the colon, generally for left-sided UC.

What is your diagnosis?

I take Balsalazide (for years) but until I found the right diet mod. it was not doing anything for me and I've been on Rx meds of many types for 13 years. Even though Balsalazide was not doing anything before diet mod. starting working for me I continue to take it because it is an anti-inflammatory with no side effects for me.

"Throw the works at your UC if it's safe to do" is my motto.
I think fecal transplant holds great promise.

Post Edited (imagardener2) : 7/5/2013 2:55:40 PM (GMT-6)

Posted 7/5/2013 4:10 PM (GMT 0)
imagardener2: Colazal is a mesalamine.

I might try Uceris and/or hydrocortisone enemas. I also have heard that Humira works for a lot of people when Remicade did not.
Posted 7/5/2013 6:40 PM (GMT 0)
I'm confused on the colazal post. It says the medicine in it is balsalazide, is it different from mesalamine in any way ? does it dissolve differently in the intestine? because mesalamine used to work for me when i was first diagnosed, but later on the tablets would just be pooped out full (and no it wasnt just the shell, i checked)

My current "maintence" med is Uceris i've been on it 11 weeks already but when i dropped from 7.5 mg of pred to 5 mg thats when blood came back
Posted 7/5/2013 6:42 PM (GMT 0)
And Also, I thought Fecal Transplants were not illegal unless approved by the GI doctor? I read that somewhere on the forum? And my doctor only believes in medicine, when i was first diagnosed he told me diet didn't matter and i ate whatever i wanted. But changing my diet has not helped me at all.. even when i was hospitalized and put on "colon rest" i would still go to the bathroom.
Posted 7/5/2013 7:18 PM (GMT 0)
ScienceGirl: I know that Balsalazide/Colazal is a form of mesalamine but it is a med not mentioned by the OP and perhaps it might work differently than the other mesalamine types since it has a different dissolve location.

colitis91995: Yes, it is formulated to dissolve in a particular area in the colon and turn into mesalamine at that location. But we still don't know where your UC is located. It is not in the same type coating as Asacol, mine is in a pill casing with the powder inside. Here's a photo.
www.drugs.com/imprints/mylan-6750-mylan-6750-14653.html

I've always wondered if there is some lack of acid in people that make the Asacol coating not dissolve correctly.
Posted 7/5/2013 7:24 PM (GMT 0)

imagardener2 said...
ScienceGirl: I know that Balsalazide/Colazal is a form of mesalamine but it is a med not mentioned by the OP and perhaps it might work differently than the other mesalamine types since it has a different dissolve location.

colitis91995: Yes, it is formulated to dissolve in a particular area in the colon and turn into mesalamine at that location. But we still don't know where your UC is located. It is not in the same type coating as Asacol, mine is in a pill casing with the powder inside. Here's a photo.
www.drugs.com/imprints/mylan-6750-mylan-6750-14653.html

I've always wondered if there is some lack of acid in people that make the Asacol coating not dissolve correctly.



Thank you so much for this, I might ask my doctor for a prescription for it, also I have colitis which affects my whole colon, It wasn't like that when I was first diagnosed but it turned into pancolitis
Posted 7/5/2013 7:41 PM (GMT 0)
Xaljanz, if you can afford. It is not for UC indication yet but sure it will, very soon.

Check clinicaltrials.gov
There is a clinical trial going on for T.Suis ova in NYC.
There are few trials going on for new biologicals
clinicaltrials.gov/ct2/results?term=Ulcerative+colitis&recr=Recruiting

Just noticed, you are just 17 years old. What does your kid GI say?
Posted 7/6/2013 2:17 PM (GMT 0)

deltaforce said...
Xaljanz, if you can afford. It is not for UC indication yet but sure it will, very soon.

Check clinicaltrials.gov
There is a clinical trial going on for T.Suis ova in NYC.
There are few trials going on for new biologicals
clinicaltrials.gov/ct2/results?term=Ulcerative+colitis&recr=Recruiting

Just noticed, you are just 17 years old. What does your kid GI say?

My insurance pays for all meds but i doubt my Gi would prescribe it, if he was what should i tell him to convince him?

What does my GI say? He always tells me i'm a very difficult case to get into remission confused
Posted 7/6/2013 5:24 PM (GMT 0)
That does not mean you really are.

If you want Xaljanz, tell him that it is a JAK (Janus Kinase) inhibitor and currently available for RA (for which Remicade and all other biologicals available first). Now Simponi is also being tested for UC (available for RA). Let him make the call.

Or I seriously would look into the trials. You are a perfect case for them (and it is perfect thing for YOU too)

Frankly, if I would be at your place, I would go trials route. I would trust them more than a doc that tells me that I am a difficult case (and go for surgery, in other words). Get your parents involved in it seriously. Take their opinion, else you take charge of your case and start doing a serious research.
BTW, how long are you diagnosed with it?
Posted 7/6/2013 5:47 PM (GMT 0)
Just a clarification: Colazal is not mesalamine. Balsalazide and mesalamine are two different drugs. They are in the same family, the 5-ASA's. It's sort of like Aleve and Ibuprofen are different drugs, but both in the NSAID family. Colazal will work for some people when mesalamines don't.
Posted 7/6/2013 8:11 PM (GMT 0)
I would like to differ.
Balsalazide is mesalamine bound to sulfa moeity. 5-ASA/Mesalamine is released in the intestine. More at www.ncbi.nlm.nih.gov/pmc/articles/PMC1728533/
Posted 7/6/2013 8:34 PM (GMT 0)
It's not a "mesalamine" when it goes in, but once it hits the colon, the mesalamine is released. 

It is in the family of 5-ASA, however, but a different delivery and how it's released can allow some patients to do better on it.   It doesn't target the left-side, it's been noted that patients with left-sided UC seem to do well on it.  Again, could be the delivery that allows it to make its way down by being distributed through the colon. 

The same is with Osalazine (Dipentum)..   Same with Sulfasalazine. 

So, in reality, the three above aren't considered  mesalamine medication until it's released.  Asacol, Lialda, etc that are pure mesalamine are released into the colon the same way they go in....their release happens once the outer coating is broken.  Not that they have to be separated from ANOTHER medication that they're bound to in order to make it into the colon.

q

Posted 7/6/2013 11:31 PM (GMT 0)
My husband has had UC for 19 years now. Lialda and proctofoam has worked well, in addition to top quality pro-biotics. He had been in remission for 2 years following this regiment. However, in the last 2 weeks it flared up. He is increasing his Lialda, had me buy top end major probiotics, and now has a lower GI scope scheduled in a couple weeks. He has been through so much. I really feel for all UC folks.

He had a super flare up several years ago and we had to go to Cleveland clinic. He was down to 123 pounds and we had to do something. Only one terrible flare up after that, which was about 6 years ago. We are hopeful. I wish you luck as well. My husband is a runner and really does not want to go for the ultimate cure. Worse thing for him, he works in a 2 story building with the only restrooms on the lower floor - engineering firm, more worried about style than functionality. Very hard for him to get down those fancy stairs to the stalls. Then when he gets there, they are usually occupied. Feel so very bad for him and all of you. I wish you well!!!!
Posted 7/7/2013 5:26 AM (GMT 0)
Do you guys suggest I ask my doctor to put me on the colazal, stop the uceris, and go back to prednisone until the symptoms are back under control? Also is Osalazine the same as Colazal? which one is better?
Posted 7/7/2013 10:06 AM (GMT 0)
If you have not tried Colazal then yes, you should give it a try. Although 6MP gave you liver issues, you could try Imuran with caution. If you go Imuran route, then test your liver enzymes every week or before you increase your Imuran dose. Your max dose can be round figure around your weight in lb. Your GI should be able to do this very carefully.

Be warned, the urine will turn yellow once you start Colazal.

Do not stop Uceris. What I have read from folks here, its better than Prednisone and you can quit it cold turkey, as opposed to Pred. I can not afford Uceris so I have not tried yet.

Osalazine is cousin of Sulfasalazine and from what I have read it isn't much better than Sulfasalazine clinically. I do no know side effects of course. It may be better in that way but it is expensive.
plus, if you are a male, you do not want to go through this route. Sulfasalaine causes reversible azoospermia. In case if this is the only option you are left with, as and when you decide to have a child, get the sperms checked.

At the end, its ultimately your decision (or your parents') with which medications you should try. What everyone gives here are the suggestions, many times they have tried themselves but discuss it with your GI, get a second consult if needed and then decide.
Posted 7/7/2013 10:46 PM (GMT 0)
deltaforce...There's no sulpha in Dipentum. It's related to sulfasalazine by it being a 5Asa medication and bound to another medication to get into the colon.

There are definitely side effects with all, especially if one is intolerant to salicylates or any ingredient in the mix...unfortunately some can be serious.

q
Posted 7/8/2013 4:38 AM (GMT 0)
Well I'm going to the doctor tomorrow, so ill ask him tomorrow.. Also I think I'm going to go off uceris and if anything go back on prednisone because uceris doesn't seem to be doing anything for me. Also I need your guys opinion on this if its been 5 infusions of remicade already, and I'm still not in remission do you think it's working? Because my doctors logic is to keep going with it when I don't see a point all I've gotten is infections, a bump on my thigh, and a swollen lymph node because of the remicade
Posted 7/8/2013 5:16 AM (GMT 0)
I think it's your call regarding treatment, side effects and "quality of life". You're young...and if you haven't seen any improvement with the Remi, then it's not for you.

There are other meds such as Humira, Cimzia, and maybe a few others in trials.


But, if you haven't tried Colazal, definitely request it.

Did the pred work to get you into a remission? and were you on other meds as well?

What are your symptoms at this point?
q
Posted 7/8/2013 11:05 AM (GMT 0)
What's your Remicade dosage and how many weeks between infusions?
Posted 7/8/2013 1:14 PM (GMT 0)
Yes prednisone helps me get into remission and the doc had me on uceris with prednisone and that's the med I'm on now. Symptoms are returning first was the blood which is now more often now it's blood with mucus and increased urgency and cramps.my remicade dosage is 304 mL every 8 weeks
✚ New Topic ✚ Reply
12