Thanks everyone. Do wish it was that easy here in the UK to see different people. I have spoken to both my GP and gastro about this and they are not concerned. My GP said the pred was masking the...
Hello everyone Haven't been here for a long time but hope that everyone is as well as they can be. I am in remission and have been for 7 months. I am now taking azathioprine and having been on...
I can retain Salofalk enema all night but I can only hold Asacol foam enema for about two hours. Wonder if it has something to do with the consistency. The foam leaves my body like water whereas the...
Been on aza for six moths now. Had a sigmoidoscopy 4 weeks go that showed my rectum to be clear, patchy inflammation in the sigmoid to 30 cm and then a stricture. The man who scoped me said it was...
We have only limited brands here in the uk. I like privigen because it only takes a short time to infuse. I have to fit it round my work and my children. I was on vigam before that but that used to...
MarjieKay - I am so sorry I have made you feel like this. Remember we are all different. I truly hope that you also find relief. My other medical problems restrict certain medications and this may...
Been having ivig for 20 years to treat my neuropathy. 40g every week....
Havent had blood results yet. I have been using salofalk enemas for the last 2 year religiously every night and also now use asacol suppositories every morning. I also take mezavant 3.6g. I do...
Err Not thought about that but to be honest don't like the idea of it. Here in the uk it would probably be a no go anyway....
Thanks for your replies. Had bloods done to test aza levels and am using both enemas and suppositories. Spoke to the ibd nurse today who said that they will refer me to another specialist with a view...
...and still flaring. I am not as bad as I was but still got frequency and small amount of blood. Back on pred just so that I can go on holiday to Spain. I saw my consultant last Monday, who is going...
What annoys me is that haemo says I am ok if my count is above one, which it is 1.7. Gastro are panicking. my white count has never been in normal ranges and goes up and down in a cycle. I have been...
Words are beyond me at the moment. I feel so frustrated, angry and disappointed. Got to stop aza cos my blood cunt is1.7 (neutrophils) and go back on the steroids....
Thanks for your replies. Plucky. I hope I don't feel like this for too long. Hope you to manage to get off pred and that you reach remission before the need for surgery. Waiting to see if the...
Hi Q Yes I had a bone density last August and it was fine. Have been taking calcium and vit D supplement. I think I could possibly e suffering withdrawal symptoms. Wonder how long they last. I did...
Well, after being on Pred for nearly two years, I am finally off it. However I feel like crap. I am so tired, grumpy and achy. I am still waiting for the aza to kick in after a dose increase about...
Can't have biologicals. I have other medical conditions that would be made worse by using them. There is no way I would take the risk and my GI said he would not put me on them either because of...
Thanks. My symptoms always came back at low doses of pred. I never got to below 20mg without having to increase them. I always used to think to myself as I increased them back to 40 that this time...
Hi Thanks for your replies. I have been doing a long slow taper of pred. I tapered every 14 days from 40mg and then styed at 20mg for 6 weeks. Then tapered every 14 days again 15, 10, 7.5 and now at...
Had a week of work and I have been thinking about things a lot. Its still early days I think as far as azathioprine is concerned as I have only been on 200mg for 3 weeks after having a dose increase....
I have been having IVIG for twenty years for a neurological condition and it didn't stop me from getting colitis 5 years ago and it does nothing for my colitis now. It is relatively safe as far as I...
Thanks John. That has given me a glimmer of hope....
Well, I have been taking 200mg of Azathioprine now for two weeks and have reduced the pred to 7.5mg. When you have a dose increase is it still slow acting? How long would it be before I would notice...
Blood test came back that I am not at therapeutic levels. They were originally being cautious due to my neutropenia but my white count has been within normal levels for the last few months. They have...
I can buy it at my local pharmacy but it is £20 for 7 or 10 days supply. It is so expensive I cannot justify buying it....
I weigh 180 pounds. So without converting it to kg I guess I could afford a dose increase of possibly up to 200mg. liver function tests are normal and so is cbc. I do have neutropenia so have to be...
Remicade or Humira out of the question because of my other health problems. Surgery is the next step....
I have been taking azathioprine for 13 weeks now and have reduced my steroids from 40 mg, every 14 days, to 15 mg. I am feeling really frustrated because I am still going about 10 times a day (3 to 4...
Thanks PamSmith. I think over did it with the diet. Too much icecream, chocolate eggs and vino over Easter. I wont give up. Got an appointment tomorrow with the specialist nurse. I am better than I...
Thanks for your replies. I am taking 3600mg of mesavant, salofalk enemas and 20mg of pred. My medical notes say mesalazine failed but I still use them in the hope that they help a small bit. I am...
How long does this take to work? I have been taking it now for 9 weeks. I have seen an improvement in that my frequency and urgency have reduced and I now go 3-4 times a day. Twice in the morning and...
Hi. Going to take back something that I said in my last post. Maybe the blood hasn't gone as I saw some this morning. I take mezavant 3600mg and am using salofalk enemas and asacol suppositories....
I have been taking azathioprine for four weeks now. I started at 150mg. At the same time I have reduced my steroids from 40mgreducing by 5mg every ten days and am at 25mg now. Usually when I reduce...
Thanks Quincy Forgot to say that when I get to 20mg of Pred I have to stay there. When I have used steroid enemas in the past they have always made me worse and had no effect....
HI, Yes I have been using enemas every night for the last two years. I think they help a bit but not enough to stop the inflammation. Thanks for your advice....
Hi, Just want to run this past you all. Started azathioprine 150mg three weeks ago. At the same time am reducing pred by 5mg from 40mg every 10 days. I know it is early days as far as the aza is...
Well after a couple of months deliberation and my consultant liasing with others regarding my other health problems. I have finally started azathioprine (150mg) and have been taking it a week now. I...
Poppie, took your advice today and phoned the IBD Nurse. RESULT !!!!!!!!!! I should be having a sigmoidoscopy on Thursday. Then at least I can restart the enemas and hopefully get on azathioprine....
Thanks for the replies iPoop - as soon as I have had my scope I plan to restart the enemas regardless of what they say. I am in the uk so don't have to worry about insurance. Poppie - I think you are...
hi, Just thought I would post an update. I feel so depressed. I have now been off all rectal meds for two weeks and have reduced the pred to 25mg. I am steadily getting worse and worse with increased...
Hi, Thanks for all the replies. So I had my appointment yesterday. The low down is although he has no problems in me having azathioprine he said he need to be sure that it will be of benefit to me....
Hi everyone. Hope you are all as well as you can be. I need to get this off my chest. I find it really difficult to speak to family members and friends about my colitis and the way I am feeling and...
Thanks for your replies....
Hi, Would just like to run this past you. How do you know if you have hemmies or its your uc. I have never got my flare under control for the last year. Been on steroids constantly at various dose...
I have cyclic neutropenia so my count rises and falls but it is never in normal ranges unless I am on steroids. My neutrophils drop to as low as 1.2. I think they have been lower. Had loads of tests...
Been doing a lot of thinking recently. I am currently taking mezavant (3600mg), salofalk enemas nightly, asacol suppository in the morning and 35mg of pred. I started seeing blood and increased bms 3...
Salofalk do granules which you put on your tongue then drink a glass of water....
Not sure why my signature doesn't appear. I was diagnosed with proctitis in 2012. Pred put me into a year remission up until 2014 I think. Inflammation spread then to distal sigmoid and pred and...
Hi everybody, I have been on repeated courses of pred now for one year. Everytime I got off them my symptoms come back. My GI and I have discussed the above risks and it was decided that I would stay...
Hi, It is a liquid. like iPoop said it can reach the splenic flexure ( my consultant and IBD nurse said this). I have no problem holding it. I administer it laid on my left side in bed and then stay...