Soldato
- Joined
- 7 Feb 2004
- Posts
- 3,072
What dosage prednisolone are you on?
Crohns / ulcerative colitis sufferers
- Thread starter ColdAsIce
- Start date
Soldato
How were you doing on the higher-than-maintenance levels of Asacol? And what was the dosage for that?
40mg of pred for a week then dropping 5mg each week until 5mg per day then 4 3 2 1 as I cant drop from 5 to nothing.
I was doing well on 6 800mg asacol per day. So good we thought we could drop it down to maintenance. Which then caused a flare up.
Only been on the Pred 2 days and my stools have already started to change which is a good sign as I was passing a LOT of air and mucous.
The only issue I really get with the Pred is the steroid induced diabetes. I can live with the insomnia for now. It the diabetic thirst and the blurred vision that is a pain. Although I think I can manage that with changes to my sugar intake.
I've had conflicting advice on when to take the Asacol. My specialist says I can take all at once but everyone else says split it into 3 equal doses.
I'm also on nightly 2mg mesalazine enemas but I dont think they are doing anything.
I'm back at the hospital next week to see the nurse and specialist to discuss the Azathioprine situation and why it isnt working
Caporegime
Been using Salazopyrin for 16 years now, and it's still working perfectly for me.
Been using Salazopyrin for 16 years now, and it's still working perfectly for me.
I think thats the main issue with trying to treat this disease. Its so individual. We have to try so many things to find one that may work for a while. The problem is the length of time each trial takes. I've been trialling this since before Xmas. Sleeping on the spare couch as a accident in the middle of the night would ruin a mattress,
a cough can empty my bowels
Caporegime
Yeah I got lucky right from the start.
I was stuck on Pentasa for nearly a decade and it was doing next to nothing, thank god for azathioprine, it's done a world of good for me, it's not 100% but at least 70% on any given day and i'm, happy to live with that. I don't want to try anything else as i don't want to risk going down hill again
Soldato
**** this disease. I either had it for a few years and it's now in remission, or I had a terrible post-infection episode which lasted years and convinced many GI doctors that it was UC, which has now cleared up. I've had the symptoms and am very lucky to say I'm now healthy, but anyone that has to deal with this day-to-day has my sympathy.
Been suffering for a few years from Uc, I have pan colitis so it spans the whole large intestine, but apparently mine is quite prone to change. It has been very severe at times.
I'm on :
40mg Omeprazole
4g Pentasa
200mg Azathioprine
Vedolizumab infusions every 8 weeks
5g Clipper
This is the most effective combination of therapies I've had, with fatigue and symptoms kept at bay. Any attempt to get off the Clipper results in a pretty aggressive flare up however. Most steroids make me absolutely mental these days, but Clipper is a great, great steroid for UC.
I just cannot seem to get off the steroids, and I'm now booked for a surgical consult. Looks like I'll be getting the ol' chop.
Anyone in the same boat?
I'm on :
40mg Omeprazole
4g Pentasa
200mg Azathioprine
Vedolizumab infusions every 8 weeks
5g Clipper
This is the most effective combination of therapies I've had, with fatigue and symptoms kept at bay. Any attempt to get off the Clipper results in a pretty aggressive flare up however. Most steroids make me absolutely mental these days, but Clipper is a great, great steroid for UC.
I just cannot seem to get off the steroids, and I'm now booked for a surgical consult. Looks like I'll be getting the ol' chop.
Anyone in the same boat?
I'll find out next week...
Caporegime
I had to switch to Pentasa for a few months when we were trying for kids (Salazopyrin killed my sperm count). I did not have a good experience with it.
Specialist in Edinburgh mentioned there are a couple of products are are maybe 2 years away from the market in the UK that will give further options for treating Crohns. I think in very specialist cases they can even use it now.
I've never found steroids to be the answer to treatment but i'm glad to hear it's working for some on here.
I've never found steroids to be the answer to treatment but i'm glad to hear it's working for some on here.
I found they worked for me (Prednisolone) really well. However, I couldn't sleep / struggled to sleep when taking them at full strength.
After my bad reaction to be Azathioprine, i'm being placed on methotrexate which I am just waiting on my blood test results before starting.
Yea I had a terrible reaction to Azathioprine, absolutely awful stuff and it's been a number of years now but I they then moved me onto methotrexate also. My problem was the scar tissue was already so severe that the steroids did little to nothing to repair any damage that was already made. So in end I had to go through surgery.
If you don't mind me asking :
- What was it like?
- Are you glad you had it?
- How're you doing now?
Well there is a potential vaccine/cure mentioned earlier in the thread that, if it works, could be available within the next two years.
The choice was well and truly taking out of my hands. I started deteriorating pretty fast. I basically stopped eating due to the pain having anything in my system would bring. A surgeon came to see me in the Hospital, said he could operate on me within a day or two and explained what would happen. So I agreed to a re-section. Taking your first steps after surgery is a whole new level of pain too
Think I was a week in Hospital before I could leave. It seems drastic but there is no way I would be able to function longterm by remaining on the cocktail of pills and steroids they had me on.
Caporegime
I've had steroids twice, as a short term measure. I would not recommend them for long term use.