Questions for GI on Tuesday

[hannah-rose]

Ok guys just a quick one, I'd really appreciate some insight. I'm seeing my GI on Tuesday because I am flaring despite medication.

I am currently on 12 weekly Remicade infusions however I have had two minor allergic reactions - I am flaring despite the Remicade.

I was taking Azathioprine but stopped after 4 weeks due to abdominal pain - I am flaring despite the Aza.

I know none of us are Doctors but what do you think the next step for me would be?

I think either try 8 weekly Remicade infusions rather than 12 weekly, and at a slower infusion rate with pre-meds benadryl/hydrocortisone. If I get a reaction or the Remicade doesn't work, try Humra. Are there any other biologics avaiable in the UK??

Re-try Aza as a maintenance drug, if the abdo pain continues stop it. What are the alternatives to Aza??

I haven't tried steroids yet so prednisone would be a short-term option, but are there any other steroids with less side effects?

My current symptoms are anal fissures/ulcers (I have perianal crohns that is classed as severe) with pain, bleeding and inflammation. Also some minor stomach pain and bowel irregularities.

Can those of you with more experience than me in regards to medications outline what my options might be? I like to go to my GI appointments as prepared as possible to discuss my treatment.

Thanks, love you all! xx

 

[Rebecca85]

I think that Tysabri is available in the UK, as a last resort med due to the potential side effects. But if you want to find out more about Tysabri, I would go read forums for people with MS as it is more commonly used for that.

Alternatives for aza are 6-MP, which is essentially the same drug but delivered in a different way. There is also methotrexate which is another immune suppressant type drug.

Alternatives for pred are basically entocort, which would not be suitable for you because it is only really effective for TI disease, not perianal. But as you have perianal disease, you might be able to try pred foam or enemas or something, where you apply the steroid directly to the area rather than orally. So there should be less side effects.

The other class of drugs which you aren't on at the moment is the 5-ASA meds (such as Asacol or Pentasa). These are relatively mild, and people tend to either tolerate them well with zero side effects, or have a reaction fairly quickly. Although they are mild, sometimes in combination with other drugs they can boost the effectiveness.

Personally, I would want to try topical steroids (applied directly to the area) first, as if they work for you they work quickly. So potentially you could get the flare under control quickly and then rely on the other meds for maintenance. As sometimes it's easier to prevent inflammation coming back than to get rid of it in the first place.

 

[hannah-rose]

Thanks Rebecca. What about Certolizumab (Cimzia), is this a biologic treatment that might be useful? I quickly looked at the info on here but I've not got a science head and find it hard to understand the differences between all the drugs and how they work.

I agree about a topical steroid and/or a topical mesalazine as a maintenance drug. The only problem about using topical steroids long term is that they can thin the skin, and the skin in that area is very delicate and mucosal, unlike say, the skin on your arms or legs.

Dos methotrexate work the same as azathioprine?

I'm disappointed the Remicade isn't doing it's job as it was a miracle at first, I hope I've not got a body that's going to reject all formsof medication - if I had Crohn's in the large or small intestine the could just whip it out, but they can't really just remove my butt hole! (TMI?)

Hannah xx

 

[Grumbletum]

I'm wondering, Hannah, if it might also be worth asking about TPN? A lot of people here seem to have had success with it, in terms of giving your bowel and your botty a chance to heal.

 

[hannah-rose]

Ooh wow that sounds a bit drastic, not sure how I feel about that! I'm going to start taking daily doses of laxido, even when I have loose BMs, because my loose movements are always followed by constipation which is really damaging to me.

Last time I saw my GI he just said to take aza. I hope he comes up with something a bit more aggressive to get things under control. Having a hard time dealing with it at the moment, seeing my GP Wednesday to talk about it. *sigh* crappy disease.