What alternatives to asacol am i likely to see?

[Rick_1138]

Hi folks.

Well having a bit of a bad time of it this last month, came off the roids to sudden pain and cramps and any d was very watery.

This hasn't really cleared up and i am going to see a GI private in about 20 days.

He is a medicinal specialist and i am going to take notes explaining my symptoms (cramp pain, gas, d whenever i have to go, sickly feeling etc), when i booked the referal through my GP the specialist said that the 800mg of asacol i was taking 3 times a day i should double to 3 tablets twice a day.

I have been taking that since end of october but have felt no improvement at all, i would have expected some change after 3 weeks.

So i dont think Asacol works for me.

Pred 40mg 8 week taper always settles it down and makes it seem i dont have cronh's but obviously side effects of acne and weight are bad, and other such.

Does anyone know what possible tablets he may suggest to ease the severe gut pains i get and the runs, as tbh its getting hard to carry on as i am unwell all the time and getting a bit depressed.

Just looking for an idea what to expect as i hope asacol and preds arent my only options.

Thanks folks.

 

[muppet]

I'm assuming that at this point you are diagnosed with Crohn's. Asacol is pretty specific as to the area of bowel it treats, and you may have inflammation outside of this effective area. When was your last colonoscopy? Any other imaging? Do you know where your inflammation is?

As for tablets, there is 6MP and Imuran that you might try, but it'll be up to your doctor and you to decide whether they're appropriate meds for your particular case (mostly decided by severity and location of inflammation).

There are also the heavy hitters, Remicade and Humira, that have great results for a great many people with the caveats of increased risk of more dangerous side effects, and they share with 6MP and Imuran an immunosuppressant effect that you will be likely to notice in your day to day life (more colds, etc). Even with the risks, Remicade is a magic bullet for a lot of people but depending upon your insurance situation it can be very pricey, too. Remicade and Humira are not tablets, but infusion drugs that have to be administered by medical staff in a facility set up for the purpose, generally every few months (after an initial period of more frequent doses, usually).

 

[Rick_1138]

Thanks Muppet

Yes i have Cronh's, was diagnosed in around 2003.

Apparently it is at the 'tail-end' of my bowels, so i assume in the last part of the colon (sigmoid area).

My last camera adventure (oh the fun of sedatives not working.....:-( ) was about 2.5 years ago, where apparently there was no change since my diagnosis?

The worry is, if there is no change, why over the last 4 years or so am i getting sharp and very debilatating pains in my lower right\under belly button.

I will be asking this at my appointment.

Remicade et al, may not be available in the UK, as i know the US seems to have some better options than the UK from what i have read.

At least in scotland prescriptions are free!

 

[muppet]

I've never heard of Remicade not being available in the UK. I think it may be harder to get due to the bureaucratic nature of approvals there, but I really don't know. I think I would remember being specifically told that you can't get it there. Worth asking about.

My Crohn's is also mostly in the "tail end" of my colon, though I have total large bowel inflammation, it seems focused there. I've gotten by well on Lialda (which technically is used off-label if you use it chronically, I think, though that may have changed by now..?) with the occasional Prednisone course to level things out when necessary. Lialda is just basically Asacol with a different area of effect and a higher dose, more or less.

 

[Rick_1138]

Well it may be available, i have just never been offered it.

The only things i have ever had for my cronh's have been, prednisolone (which are always welcome when i am feeling how i am now, damn the consequences lol.), when i first had the gut pain waves and was in hospital, i was on liquid paracetamol, after having my first scan and biopsy (i was bleeding from a slight tear at very tail end, so they were worried i was bleeding internally, but was only ever external and small amount.

during that i got metronidazole for a brief time, which seemed to help but it was a defence med for after surgery i think?

so apart from pred, my only regular tablets have been the asacol, as for an age i was on pred to settle it down, then leave it for 2-3 months until it got unbearable to function, but i cant keep taking pred, but i cant keep having severe pain bouts and watery D.

 

[muppet]

Metronidazole is an antibiotic, can't use that chronically. After surgery or during flares it's pretty common. My GI doesn't tend to give it but the other doctors in his practice do and that's how I've come to occasionally be put on it. Truth told it does seem to help flares sometimes, but it's difficult to say for sure.

For the waves of gut pain I've had good luck with hyosciamine, but you have to be conscious that you're just dulling the spasms and not really treating the inflammation with that drug, and you have to be careful.

 

[Rick_1138]

yeah, at the moment i am using paracetamol and codine, over the counter from pharmacy, i get the third degree from the woman about 'its only for 3 days, its addictive' etc.

But it only dulls the spasms, but helps, i am not an addictive person, i have had presription paractemol and co-dydramol and only ever use it when in pain, not as a preventative thing.

But its all i have till i see the doc on the 12th.

 

[muppet]

I much prefer hyosciamine to narcotic painkillers, mostly because it's not really habit forming. Narcotics carry all sorts of risks, addiction being the primary one, but also reduced motility and the potential to slow your healing and even exacerbate inflammation. I treat them with kid gloves and I've managed to avoid them except after surgery, which is not always easy but I avoid them like the plague.

Hyosciamine will reduce your motility, too, but at least for me, it seems to have far fewer side effects and I have never felt like I'm waiting for the time to pass so that I can have another. Might be worth talking to the doc about.

 

[David]

Hi Rick, I'm sorry the Asacol hasn't helped but frankly, I'm not surprised as it's not even approved for use in Crohn's Disease because the data supporting it's use isn't very good. It may help some people but you're obviously not in that group

1. Remicade and Humira are available in the UK. I don't think Cimzia is.

2. That you now have lower right quadrant pain is a little concerning to me. I don't think your inflammation is confined to your sigmoid area anymore and they need to evaluate that.

3. As muppet mentioned, a thiopurine like 6-mp, Imuran, or azathioprine may work. Or utilization of a biologic. I personally wouldn't let them try to increase my Asacol dose or switch to another form of mesalamine (the active ingredient in Asacol) but that's just me.

 

[muppet]

It's also worth mentioning that dietary modifications may also help you. If you have the ability to see a dietician, it's a good thing to do. Personally, I have a lot of luck with a low-residue, no dairy diet. I also avoid spicy food, greasy food, and alcohol. Others have great luck with modified keto diets or gluten free diets. For most of us medication is only part of the treatment. I really do firmly believe that diet is at least as important as what meds you're on.

 

[Rick_1138]

Well i have had the lower right pain for a good 4 years or so on and off, when i was getting my sigmoid\colonoscopy about 2 years ago the sedative didnt work (i think the nurse burst my vein putting it in) so was pretty with it when it was happening, and the pain during the test was exruciating, i always think its gas pain but an extreme form as they use air to get the camera in and the pressure was making it hurt a lot.

However during the scan there was apparently no change in my condition?

The only suggestion my dad had actually was that i could have a grumbling appendix as symptoms are similar, the bounce test hurts, nausea when its painful etc.

So its worth asking as it could be that my Crohn's hasnt changed much but my appendix is going off the plank!

 

[David]

With the sedative not working were they able to get far enough with the colonoscopy to visualize your terminal ileum?

 

[Rick_1138]

No idea? they asked if i wanted more sedative as i was obviously making noise with the pain, but i think i said something along the lines of "no, just hurry up and finish" lol.

The doc carried on as he required, they didnt speak to me after wards, apparently they only do if there is a problem, it was from a GP nurse about 2 months later that i found out there was no recordable change.

I would like to think they looked at all they had too, rather than just look at my large intestione to see what was there from before.

again i will ask the GI as he may suggest another scan...yay!... the dreaded sachet day.