Remicade 6wkly

[soupdragon69]

Here we are again! ;-)

Saw my GI today and he has finally worked out what is going on and what needs to be done at last.

Agrees not to recommence the Pentasa - has told me I have life threatening asthma (oh joy) and if as my asthma cons suspects I am aspirin sensitive too then cant have Pentasa or anything from that drug group again.

Liver tests are still rubbish so will keep me off the Imuran totally. Wants me to start 6MP in the new year when my tests are improved OR if they stop at a specific level and appear to settle there then will start the 6MP then..

Has also decided that my remicade needs to be moved from 8wkly to 6wkly and am to have 6wkly infusions 3 times then he will review again.. Said it is possible to just be on remicade only and no other meds and some centers are finding this is better overall for patients.

Told me also today that I have a long segment of Crohn's on the barium follow through (done this summer during my admission) in my ileum but was so stunned as no one has told me this before I didnt ask how long is long!

Am hoping things will start to improve now.. fingers crossed eh? The only way is up!

Wanted to say thanks to all of you who have listened to my rants these past weeks too - your thoughts and support have meant sooooooo much.

 

[Kev]

Hey soup... Well, I hope this latest con will help settle down the topsy/turvy world your life has been lately. Bad enuff to go thru it, but when the doctors can't seem to come to a consensus, it would be like adding insult to injury. As for the pentasa, I don't know of anyone on here who experienced a 'eureka, I am cured!' scenario with it. More like a bandaid on a wound that won't heal. It really doesn't do much more than sooth the feeling of... well, we must do something.. even if it doesn't work miracles. Think any minor benefits expected are far outweighed by the risks in your situation. As for the imuran, my condolences. I'd placed a lot of hope in that one myself.. but it wasn't to be. Que sera, sera. And you still have the option of the 6MP to look forward to. Hope that works out. If it doesn't, there's still the remicade, possibly even Humira someday. And if all of those fail to produce good results, have you given any thought to LDN? Just because a crazy ole fool like me tries it doesn't mean a sane one like you can't. Anyway, all the best. Keep us posted on how you make out.