I have been diagnosed Ulcerative Colitis a while back and just been to hospital after a recent flare-up. I'm now home and taking steriods, but I'm also taking mesalazine. My problem is that every time I start taking mezalazine my symptoms get so much worse in just a day or two (night time diaria basically all night long with severe cramps which prevents me from sleeping). When I don't take mezalazine I'm mostly fine, no diaria or blood with just the occasional cramps when I pass stool.
More specifically I was started on Octasa twice already, but each time I had the above described episode so I stopped and asked for a different brand as I read that some people don't tolerate Octasa. They gave me Salofalk instead, but just after a day of taking it I had another episode/terrible night. Once I stop everything goes back to a more manageble state.
Unfortunately I can't stay on steroids on the long run and I will need mezalazine or some other anti inflammatory drug to keep me UC at bay. I'm now really concerned that I developed intolerance to mezalazine, even though I used to take it with no issues when my UC was first diagnosed.
Did anyone experience similar symptoms or issues with mezalazine? Maybe with Octasa or Salofalk? Maybe I should try Pentasa?
Thanks so much
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rg1987
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Hi, Thanks for your answer. I've been on 40mg of prednisone for over a week. I started Octasa two separate times already, but I had to stop because I got horrible side effects (night time diaria sometimes with blood, cramps and severe abdominal pain). When I'm not taking Octasa I don't have these symptoms. I tried Salofalk too, but got the same symptoms.
Have you tried Asacol ? I have been on it for 20 years with no problems, was changed to Octasa and it didn't work so back on Asacol and all fine again.
I had terrible trouble with those meds also. A compounding pharmacist suggested I try LDN (Low Dose Naltrexone). I stopped everything else and went to no noticeable symptoms almost straight away. My Fecal Calprotectin measured 1400 and went down to 75 and now 6 after being on LDN. I’ve been taking it for about 6 months and have had no further flares. Do some research on LDN and you will need to find a GP willing to prescribe it. Good luck.
Hi, thanks so much for your reply, it really helps to know that I'm not alone with these issues. I'm happy you're doing well, I will definitely do my research and try it get my hands on some.
Did you know that Pentasa, Asacol, Octasa, Salofalk and Mesavant are all the brand names for Mesalazine (Mesalamine in the US). I didn't know this until I looked up to read about Pentasa years ago, so I could never get my head around why do doctors change from one brand name to another when they all contain the same medication. They all come in different forms of delivery ie tablets, powders, granules, enemas, suppositories and is this what either gives relief of, or worsening of symptoms?
My youngest daughter was prescribed Pentasa tablets and her symptoms similar to yours worsened and in fact none of the brands worked very satisfactorily with her and she spent most of her younger life on steroids and these were a necessity to keep her alive basically. However my elder daughter when she was diagnosed was prescribed Salofalk granules. She used to swallow the granules each morning with the bio-yogurt drinks and she just got better and better and went into a remission that lasted 16/17 years! Last year she relapsed very badly. Her doctor put her on some new meds which their trust said they had to prescribe and she carried on being very ill for another week until she said I want my old meds back, he did and within two or three days again, a massive improvement. He even apologised! She's now back in remission we hope for a good long time again. I can understand with the younger one that it must have been the mesalazine that did nothing for her and nothing to do with brand names but with the elder one she was given Asacol after her relapse. So why would one brand name work and not another if they contain the same med? Was it tablets as opposed to the granules? I'm sorry I'm not a lot of help on this for you but do wonder if its something to do with the forms of delivery and the way the different types react in the gut. A bit like some people take aspirin tablets and some take soluble aspirin because one way works better than the other.
I'm sorry Jasmine but I haven't had any more info on mesalazine since writing the above except to say my eldest daughter is still in remission once again after using the Salofalk granules with a bio-yogurt drink. She stopped with medication about a,week after the flare-up finished about a year ago now.
Unfortunately my youngest daughter had the whole of her large bowel removed on her 18th birthday!😓 That was 13 years ago. She had a stoma bag for about six months and then had a pouch made using her small intestine and has basically never looked back. Just one or two little hiccups along the way but nothing too serious. I have read on this forum from time to time others who have had this operation and it's given them their life back! It certainly did with my girl as her UC was particularly impervious to all the meds and it was her only option. She went on to go back to college, then Uni, had a baby boy who's now eight years old and she is now pregnant with a baby a girl using IVF. Her body has changed in certain ways and it seems she could conceive but not maintain the pregnancy. They are not sure if this is a result of scar tissue or anything else to do with her body's trauma over the years. Ultimately there can be good results with this condition but it is a bit of a nightmare finding the meds that work without undesirable side effects!
Thanks for your reply. Yes, I know that they are all different brands of mesalazine, therefor effectively the same thing. I used to take Salofalk capsules when my UC was first diagnosed, I took them for 8 years with no issues. I was then off meds for another 9-10 years with no flare-ups.
Now that I have to take them again due to a recent flare-up, I showed serious side effects to not one, but two differents brands, one of which I used to take as a kid. This is what made me think that I developed an intolerance to mesalazine.
I'm sorry to hear about your daugters, I can relate and I'm happy they are doing better now.
Also thanks for your advice about different delivery, I might try granules and see if my body tolerates it better. I wish you all the best.
Anything's worth a try! Perhaps with a bio yogurt drink! A lot of people find these soothing with gut problems, good luck anyway and hope you soon find some comfort.
The different brands are all the same active drug which is mesalazine. And regardless of the form of the medicine which can be tablets or granules etc. The main difference between the brands is the way that they release the actual mesalazine into your colon. For example if I'm not mistaken one of the brands has a starch coating on the tablets whereas another brand uses pH dependent coating on it's tablets and granules and this is the difference between the brands and why one works and another doesn't.
I've personally tried Pentasa and Octasa and am currently on 4g Pentasa granules and they didn't really work on their own. But because I got admitted twice within 3 months they've started Infliximab for me as well.
Hi, Thanks for the info it is definetely helpful. I tried Octasa and Salofalk so far and had to stop taking them because I had the same nasty side effects from them. I'm thinking I will give Pentasa a go. Never heard of Infliximab but will look into it. Thanks and all the best to you.
I take Pentasa and it had been working. Asacol didn't help. I have started my third biologic drug and I seem to be tolerating it. It's not perfect but better than Pentasa alone which I took for years. I am not familiar with bio yogurt--what is that? I do eat yogurt often--live in US so maybe just a different name. Good luck. Try Pentasa. I think it is released father down into the bowel than Asacol but not positive on that
Hi I have only been diagnosed with colitis for about a year and I was taking octasa which didnt do anything, I then done some research and found granules Penatsa and they are really working well with me, I guess it depends on the individual.
Hi, Thanks for your reply, I'm also thinking of trying Pentasa granules soon, I really hope it won't give me the same side effects as Octasa and Salofalk. All the best to you!
I’ve had very similar experience with mesalazine, I’ve tried all the brands and even the suppositories cause me awful stomach cramps. Years ago I took asacol with no side effects so I don’t know why now I cannot tolerate it. Just done a two week course of prednisone enemas, don’t know what will be the next step after that if I cannot use mesalazine.
I'm sorry to hear that, I feel for you. I stopped trying different brands of mesalazine, because they just make me worse. I'm almost off the prednisone so I'm a bit worried that my simptopms will return once I'm completely off the steroids. My doctor wanted to prescribe more agressive drugs (immunos supressants), but I wanted to try LDN even though my gp didn't agree with that so I got it through private means. I will probably know more in a couple of months.
I have had UC for almost 50 years and have been on salazopyrin tablets on and off for most of the time. Have tried mesalazine before did not suit me, have had to recently go back on it as my normal meds not available. Have had stomach cramps for a few days, but nothing too bad, will persevere for a while longer. Hope you get better soon.
I have never heard of that. Spoke with my consultant yesterday and they want to try an 8 week course of oral steroids 😩. Scared about that but desperate to find something that helps.
I have been on steroids only once before, many years ago and the steroids worked really well. I think when you're unwell you are willing to try anythingGood luck.
I'm on the last week of my 8 week course of Prednisolone. While they helped with my UC, they messed with my sleep cycles especially while I was on high dosage. Also make sure to take calcium and D3 supplements while your on steroids. Good luck with everything!
It’s a worry isn’t it. My symptoms at the tail end have improved, no blood etc but I have such bad upper gastro symptoms that I can’t see are related to the U/C. (Mine is proctitis /distal ). The upper stomach problems all started when I was admitted to hospital and started on high doses of the mesalazine, I was so sick for 4 weeks straight. That was just before Christmas and my stomach has never recovered.
What usually helped me when I had stomach issues was digestive enzymes and pre/pro biotics. This was last year though, ever since I've put myself on an IBD diet I have no upper gastro symptoms whatsoever, but I still take the enzymes and probiotics. Anyway I hope you get better soon.
I'm not following any IBD diet per se, more like I took some of the key points and combined them with an elimination diet so I can map out what foods give me heart burn or make me bloated.
The key points of my diet are the following:
- avoid spicy / hot foods
- avoid too greasy foods
- avoid fermented foods
- avoid dairy (I'm slightly lactose intolerant)
- low fiber (during flare up especially)
- vitamins and supplements to make up for any nutrients my diet is missing
I have tried them all & found Salofalk to be the best tolerated, I had worse reactions to Octasa & Pentasa. The Salofalk granules & suppositories seem to be better manufactured than the Pentasa, the Pentasa suppositories made me worse if anything.
I've noticed a few people saying Asacaol is effective, I've never been offered this so don't know if it is better than Salofalk or not, interesting to hear others experiences.
These meds actually have ingredients in such as Methylcellulose which are laxative, I can't understand why as that's the last thing most of us need.
I think trying to be consistent with meds & diet for a sustained period of time is the key, too many times I've had a bit of this or that as a treat on a weekend & it sets you back, since the start of this month I'm trying something called Specific Carbohydrate Diet so will be able to judge it's effectiveness by the end of the month.
Thanks that was informative, I didn't know about Methylcellulose, it is weird that they would put laxative in these pill. I was prescribed Mezavant but I didn't try it yet because I'm afraid I will have the same bad side effects I had from the Octasa and Salofalk tablets. I was also thinking of trying Salofalk granules.
Yes, you are absolutely right about being consistent about meds and diet, I think my diet is pretty good so now I just need to find the right meds.
I no, I mean it doesn't say how much but I've certainly had periods where the toilet trip frequency went up when on the higher medication, particularly with Pentasa, everyone is different though. I've upped mine to 3g Salofalk Granules & 500mg Suppository per day 2 days ago as well as some dietary changes (very low fibre) & have already seen some good improvements this week.
I tried Mezavant XL once but can't remember in detail how it was, I think theres something different about its formulation which some people react differently to so it might work better for you.
I think what is good with the granules is that they are already dispersed, some have said about tablets passing straight through the system.
But yeah I hope things keep improving for you, keep believing
Hi. I am fine with the mezzanine and octass aren't they the same thing ! Pentasa us a foam used isn't it? I tried that couldn't get on with it at all so never used it again. I am on much more serious drugs now. If you don't get on with what your given when the steroids are stopped there are lots of other medications they can give you I have been 9n azathraprine and infliximab for 7 years it changed my life to normality. Ask your consultant about other options
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