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UC MEDICATION, what has worked best for you?

O1990 profile image

Hi Guys,

I'm just wondering what peoples experiences are with various types of medication? Such as Salofalk vs Pentasa? Granules vs Tablets? Suppositories vs Foam Enema?

Any information on what has worked best for you medication wise or diet wise would be great to hear, finding the magic formula is proving hard.

Cheers

#salofalk #pentasa

26 Replies

Asacol and in remission for 24 years, diet wise everything white, no fibre, no nuts, seeds or beans, limited veg and virtually no fruit.

O1990 profile image
O1990 in reply to bantam12

Thank you for your rapid reply.

Asacol is one that I have never tried, probably tried everything else Mezavant XL, Octasa etc. I've not been offered Asacol, are you UK based? What forms does it come in?

Thanks

bantam12 profile image
bantam12 in reply to O1990

Octasa is the cheaper generic brand of Asacol, they are supposed to be identical but they aren't, I had been taking Asacol for many years then was changed to Octasa because it's cheaper but it didn't work for me so I'm back on Asacol. I take the modified release tablets, comes in 400 and 800mgs.Yes I'm in uk.

O1990 profile image
O1990 in reply to bantam12

This is interesting, I used Octasa with mixed results, for one period it seemed to work and another not so much, Asacol definitely sounds worth a try. They often say things are identical even though it isn't the case which can be frustrating.

What sort of dose do you have to take to maintain remission? and is it available on the NHS? If so I will have to discuss this with my consultant when I have my next review soon.

Thanks,

Olly

bantam12 profile image
bantam12 in reply to O1990

Yes it's on the NHS and I take 2x400mgs twice a day but I can alter my dose up or down if I feel the need. I was on a lower dose for many years but having my gallbladder out last year caused bile acid malabsorption so my dose was increased at the time and I've stuck to that.

O1990 profile image
O1990 in reply to bantam12

Alright thank you for the information, I can't see what I have to lose with giving the Asacol a go instead as a few varying ingredients can make all the difference to tolerance levels. For instance the last batch of Salofalk Suppositories I got I noticed they've changed the shape and formula for the worse, they seem more irritating now.

Last question is have you had issues before with the area classed as proctitis? If so did the Asacol oral work alone for this or were you prescribed any topical meds?

Thanks so much for the info.

Olly

bantam12 profile image
bantam12 in reply to O1990

My colitis involves the whole colon so topicals wouldn't work for me, I did try in the early days but they didn't do anything useful. Good luck with finding the right treatment.

O1990 profile image
O1990 in reply to bantam12

Interestingly since your message the IBD flare clinic agreed to prescribe Asacol, although they tried to push Octasa first which I had to correct them on.

It then went to my doctors surgery who confirmed the prescription was Asacol tabs & Salofalk enema. It then went to the pharmacist who first said the prescription was Octasa tabs & Asacol Foam enema but then changed to saying it was a Salofalk enema after I said it should be & that I'm pretty sure Asacol don't even do an enema anymore. They wouldn't prescribe the Asacol though so it is now back with the doctors surgery who again confirmed the letter from IBD says Asacol.

Just shows they are keen to palm you off with the generic version instead, hopefully will get it sorted soon.

Idalmis profile image
Idalmis in reply to bantam12

How interesting! Every time I have a flare, it is after following a healthy high fibre diet. Pulses, vegetables, nuts and seeds. I need to keep remembering that.

Could you tell us a little more about your UC condition - proctitis or sigmoid etc, ie where you have inflammation, what symptoms you have, and how long you've had them? Then those in this group who have been there can best advise.

O1990 profile image
O1990 in reply to bresbo

Hi There, Of course, I used to have proctitis only which was diagnosed a few years ago but that has developed into pancolitis which was diagnosed a year or so ago.

For a long time I was only prescribed topical medication which is maybe why the disease progressed.

Toilet trips are around 5-6 a day at the moment, blood can be present at times but not all of the time, I've had periods where things were much worse.

I'm starting to nail down a few dietary changes as well even though I've cut out things such as nuts etc a long time ago. I feel as though Salofalk Granules & Salofalk Suppositories help but aren't the answer, when I have too higher dose I end up rushing to the toilet more frequently.

bresbo profile image
bresbo in reply to O1990

Thanks for all the information. Are you sure it's pancolitis you've got, and not a progression of proctitis to sigmoiditis (or procto-sigmoiditis) which I understand is the more common initial progression? The reason I ask is because you said you maintained topical treatment which suggests left-side only.

I've noticed that there's been discussion of which oral mesalazine people have tried and which works for them. But if you do have left-side inflammation, then topical medication is the way to go, with oral as supplement to that. This is what NICE recommends in the UK, but doctors don't emphasize it enough because many patients aren't too keen on topical meds.

pathways.nice.org.uk/pathwa...

Now if Salofalk suppositories used to work for you, but are now proving unreliable, then this is a situation I have personally experienced. It's true there is a slightly different mix to Salofalk 1gm suppositories versus their 500mg version, and Pentasa suppositories are completely different to either. But whatever the case, might I suggest that it's not the composition of the suppository that's causing you problems, rather the fact the your inflammation has progressed out of the reach of any suppository.

From the "other end" as it were, it's also possible that your oral mesalazine - Salofalk granules - aren't reaching down far enough. So there are areas of inflammation that aren't being treated. I had a telephone check-up with my consultant only a few days ago, and he emphasized that what's important is to get the medication (whatever it is) to the site of the disease.

For topical medication, I think (someone correct me if I'm wrong) there are two options. Firstly there is mesalazine foam or liquid enema. I haven't tried the liquid but reports say that it's hard to keep in. I have tried Salofalk 1gm mesalazine foam. It does irritate me, and I don't like it; but I think it works. Option 2 is a steroid foam. Bedesonide foam seems to be a good choice because it has far less systemic effects than the older prednisolone. I've used Budenofalk foam and it was very good . You can't use it long term, but either that, or prednisolone foam, for 6 to 8 weeks could nudge you into remission.

You could also add an oral budesonide targeted at the colon. Cortiment is the brand offered in the UK. Again short term (8 weeks only).

Diet is a subject of infinite complexity. My take on it is, if you're in a flare, keep your foods simple, not too fibre rich, and fairly bland. If you're in remission, enjoy yourself.

Good luck.

O1990 profile image
O1990 in reply to bresbo

Thank you so much for taking the time to compose this in depth reply.

I will definitely request the foam enema as a back up if the addition of Asacol isn't having the desired effect. I think I will make one change at a time just so I know what is having effect.

It was said to be pancolitis the last time I had a colonoscopy which came as a shock.

Hopefully the above changes will work without the need for steroids as they aren't something I have ever tried, but we will have to see if it becomes needs must.

I've done a lot of reading on diets such as the Specific Carbohydrate Diet, just a case of putting it into practice and sticking to it religiously, which takes a great deal of willpower.

Thanks again for the info and maybe I'll send an update further down the line.

I’ll share my experience with medications. Diagnosed with UC in 2018. I started with Salofalk granules. That seemed to work okay until the Gastro nurse added Salofalk enema, I think it was probably the foam, but for some reason my pancreas became inflamed and let me tell you, you will know if this happens, severe pain on the left side under the ribs. I decided to stop all meds at this point and the pancreas went back to normal. I was taking no medication for around a year and getting minor flare ups, then I had a massive flare in lockdown. After three weeks my GP prescribed a short course of prednisolone, 10 days and that stopped the flare. Back to the Gastro nurses, they wanted me to take an 8 week course of Prednisolone, which I refused. I asked to try Octasa. They gave me the highest dose and it caused side effects, so I reduced the dose to x 2 800mg per day. This has worked for me for over 6 months so far, so I’m sticking with Octasa at the moment. I also have a 5 day pack of Prednisolone with me in case of emergency.

O1990 profile image
O1990 in reply to Susiiscute

Thank you for sharing your experience so far.

I would say I have had similar reactions when using the enema (liquid) in that I just didn't feel myself, maybe it's the way it is absorbed.

I've not given the foam a proper go to compare as yet.

So would you say Octasa has worked better for you than Salofalk Granules?

I've never tried steroid treatment as yet, but may have to consider a short stint as you did if things persist.

Susiiscute profile image
Susiiscute in reply to O1990

About the steroids. I was so ill with the massive flare and very weak, lost over half a stone in three weeks, could barely function. I took the first dose of steroids (Prednisolone) Bam! It was like rocket fuel, I went straight into the garden, made a door wreath from branches, came back in, did a workout, lol, that stuff is powerful! I refused the 8 week course because I don’t fancy the side effects.

I’m not certain if it was the foam or liquid. I liked taking the granules and think they worked. The nurse said he didn’t know how the enema could affect my pancreas, because it’s nowhere near it. That seemed an odd response because I assume it absorbs into the bloodstream, but maybe I’m incorrect. So far the Octasa giant horse tablets seem to work. I don’t have a lot of data, because I’ve only taken them or Salofalk for about 6 months. The steroids, Prednisolone are for a severe emergency, such as a sudden flare. The way my UC operates is, I’m fine and normal most of the time, no need to restrict foods, but if left with no meds, it flares up twice a year, very severely with instant weight loss.

Hi mesalamine always works for me.I introduced kefir to my diet cutting out most diary after my last flare over a year ago and I have been great 👍🏻

O1990 profile image
O1990 in reply to Bulldoguk

Hi Bulldog,

I’m thinking to cut out dairy as well other than ghee and Kefir, just bought some kefir the other day (Arla Brand) which seems pretty good stuff, are you buying or making homemade?

Bulldoguk profile image
Bulldoguk in reply to O1990

I buy it from any polish shop it’s half the price of branded.

O1990 profile image
O1990 in reply to Bulldoguk

Good idea 👍🏻

Interesting thread. I have just been diagnosed with colitis and prescribed salofalk granules. It’s only been a couple of days but frequency, urgency and consistency has definitely improved so far. I’m hoping!!!

O1990 profile image
O1990 in reply to Hephzi

Hi there,Great to hear you’re having a positive response to the meds, what dosage are you on?

Hi. I’m on 3g daily for a month then to be reviewed. Nice to find a palatable medicine too!!

I have been told to eat what I want, so no formal restrictions although I am sticking with some of the guidance given before my diagnosis for now ie low fibre, no spicy, no alcohol.

That’s good to hear, when on 3G I find it a bit laxative but maybe that’s just me.I’m hoping Asacol will be better tolerated in that regard.

Yeah I think diet makes a big difference, I find it a bit backwards that NHS doctors say to eat whatever you want, hopefully something that will be focused on more in the coming years.

Hi Guys,

Starting on the Asacol 800mg today so will report back after giving it a good crack.

I'm hoping for an improvement over the Salofalk Granules which weirdly I seem to be better on 1.5g than 3g which I've been on recently, so I don't think it is the medicine for me.

In another post someone has mentioned about LDN (Low Dose Naltrexone) working for them, not sure if anyone else has also had any experience with this...

Cheers

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