Thanks all. Just one thing: we hear mainly about those with cardiovascular problems, liver and kidney disease etc but not auto immune. Do we have any idea yet about crohns, humira (imraldi) and...
I am worried as I had my imraldi dose raised to one injection every week as tests showed my body was a bit resilient to the drug. I have been doing this for about 8 weeks now. I have silent crohns...
Hi - l have crohns - have had it for 25 years - no symptoms except some days I get the runs worse than others. 16 months ago I had my first small intestine mri and a colonoscopy. The results said a...
Thankyou ontheflipside - so pleased to hear you are doing so well. And you are young like him. He has been cleared for humira and will start in about two weeks. Like you, steroids don't work now -...
Sorry I poop I didn't answer you - he took the removable at a time when he nearly lost his bowel so we would have tried anything rather than that and it did work while he was on azathiaprin and...
Thankyou all - keep posting - really appreciate the comments and the links and your understanding... Things are good in Blighty thanks Richard......
What about, though, the people you read about who say they felt so ill on it, made their lives worse etc - you can't help listening to them?...
Ok I appreciate your straightforward reply! It's his decision - he's 24 - we are just trying to gather opinions. Thanks so much....
Thanks for your reply. Am worried 1)Risk of lymphoma and t-cell cancer 2) how long will it work for? He's young and don't want to use up all drug possibilities though know there are others. 3) long...
My son is 24 - has ankylosing spondylitis and UC. Have kept the UC under control for over a year now through Chinese herbs but they don't work on his back. Also now got over confident and hasn't...
Hi all - my 24 year old son has ulcerative colitis and AS. We finally have the colitis under control having seen an amazing Chinese Medecine dr but having got a permanently bad back with constant...
He's 23. He finds enemas really hard....
30mg for 5 days and then went to 40mg 3 days ago - so not long and I suppose slower to work the more times you have it. Last dose was ended last May....
Has been on salofalk granules and some amazing chinese herbs through a very eminent chinese consultant. Christmas to now is definitely his danger time. Have tried so much and nothing really helps -...
My son's having a bad flare - now on 40mg of pred. (should I get him gastro-resistant as been given normal tablets?) Stomach cramps are nasty -make him feel like he needs the loo all the time. Any...
What about trying chinese medecine? We went to a top man in the UK and he got my son off prednisolone (he couldn't reduce from 40mg without flaring) - that was 10 months ago - and although flaring a...
I think most people come on here when they need help or advice ie when things aren't going well... we've not been on for ages but now my son's in a flare I've been back on for advice which has been...
Thanks - I know you're right - actually he has been on remicade. He was on it for 5 months and it stopped working that's why humira is the next choice. Seeing our GI in London next week so can...
Will add a medication to the chinese herbs too. I am so worried about him going on humira - that's the next move really as he has AS too - an inflammatory back problem - which always flares at the...
At the moment he is not on any other meds - amazingly he has been doing brilliantly on chinese medecine for the last year but he is always vulnerable this time of year and he can get really ill - he...
Thanks for the advice - don't think we will be able to give it too long to work as he will get iller without something stronger....
Disappointing then - I have read that some people do well on it but I wonder if not when it's severe....
My son is having a flare - going to the toilet loads. Our GI has agreed to let him try uceris first before prednisolone as there are a few less side effects. But how long do we give it? Is there a...
My son's on a whole regimen of chinese herbs - 2 absolutely vile drinks per day, specially made for him and 2 qing dai tablets per day. Plus an enema at night. So we will see how it goes - the doctor...
PS: can't take nsaids as think they caused the UC....
My son (22) has ulcerative colitis and AS. At the moment his back is painful and stiff. He is tapering off a course of pred and got to 12.5mg and the pain has started. Any ideas of anything he could...
Going to order from amazon - thanks so much - will update you.... thanks so much...
Thanks, Soystud, we have tried different heights - got it hanging off chairs, pictures - all sorts!! How could I get an empty one of what you have - that looks more sensible! We are in the UK....
Yes, Soystud that's exactly it. The amount he has to use probably fills the tube....
Exactly! At least that what it seems....
Thanks for the reply. - the enema's set up in a bag and a long tube - like the old fashioned ones as it's a liquid....
Ok - trying chinese herbal enema with eminent doctor but my son just can't get the enema to work! It's all set up - he lies on his left side, he checks for air locks, inserts the nozzle bit. But he...
Have been gluten free all the time on ldn. No haven't tried the transdermal so perhaps this is the way to go. Will see if we can get it in the UK. Thanks for advice. Sometimes I think th uc is...
Hi Laughingduck, stayed on it so long trying different amounts - did 2,3 and 4mls. Just wondering whether to try it sublingually as some have had success with that. Also really wanted it to help as...
Been on ldn for nearly 2 years - so wanted it to help but don't really think it has so just come off it as have been flaring badly. Good luck though, it does benefit many....
I've posted on it and I'm not new. My son tried it, thought it helped for a bit but now stopped it....
At least if you work for yourself and you are ill you don't have to answer to anyone except yourself........
My son got ankylosing spondylitis first at 16 then the UC at 18....
Really interesting - keep us updated....
4 weeks for my son - tried everything during that time - eventually iv ciclosporin and iv steroids calmed everything down. Was back in hospital 4 months later when the ciclosporin made him ill and...
Is Uceris available in the UK?...
Hi - my son (21) has both too. The UC is severe, the AS can be too and when one flares the other does. So it's tough. He was on remicade for about 5 months and it worked well for both then slowly...
His highest was a crp of 300 - he was so ill in hospital, nearly had his bowel removed - remicade saved it then stopped working after 4 months. We are happy if below 20 though the lower the better....
Thanks Katsmom - it's rubbish isn't it watching your child, whatever age, so ill. Remicade only worked for a bit so he came off it - I worry about the biologics - so many people seem to feel so...
Yes, seems to be the way - Will's highest crp was 300. Not sure what it is now but would think around the 100 mark (probably more and on steroids). I am starting to think surgery will eventually be...
Hi Gary - lost the bottle (can you believe it?) so had a gap of about ten days - seemed to be too late to stop the flare. He's been on pred now for 4 weeks as was nasty with high crp, skin boils,...
My son's got down to 25mg of pred but symptoms returning - feeling crap, bms up and some blood. Having blood test today - know crp will be going mad again and probably hb down. Does this happen to...
Hi guys - keep us updated on the patches - at present my son's trying no sugar diet to kill off any candida though no improvement yet. Down to 25mg of pred and thinking we may need to try the patches...
Sorry Imran - meant yes please to you. Would love the details of your chinese therapy and the practitioner. Where are you in the UK? Thanks...
Yes please Lodi - would love the info. Where are you in the UK? Thanks...