Another flare up while on steroids

My GP's never really know the answers to anything. Do you see or speak to IBD nurses much? I find they are more helpful.

I was advised they didn't want me to take steroids for long so it really is a balancing game. I've been on them 6 frustrating weeks aswell as 4 pentasa a day.

Hi Carrie, my son had UC, what do you have? One thing I would always recommend is try to get to St mark's Hosp London or John Radcliffe Hosp Oxford. You can get a GP referral. My son went to his local hosp where they see so few IBD patients that they don't have the specialist experience. He has has several ops but is a lot better now. Good luck. Sheila.

Do you find your GP can help. Because theu aren't specialised I find IBD nurses at hospital know better but it's still all quite new to me so don't know what's best.

I don't have an IBD nurse, I see my GP who is very interested and very involved! Sadly, I often wait months to see a Consultant! I have a hospital appt this Wednesday and last one was 1 year 3 months ago! Not great, so I work closely with my GP but quite frankly I have tried all available drugs and find them all the same with all the same side effects! Steroid helps but I'm not happy to be on steroid often! It's a hellish condition! Almost 5 years now and seldom without a flare up! Wish I had the answer. I wish you well, but don't give up trying everything!

That's us a shame about your IBD nurses. Fingers crossed mine are pretty good I must say. Mid week they take calls between 11-12 and if you have to leave a message they call you back. I also get a consultant appointment around ever 12 weeks.

My GP isn't not interested. They just have no idea and I'm not comfortable when they start googling things about it in front of me. I could do that myself. ??

Hi Looloo,

I started in 30mg (6 prednisolone) then tapered down week by week. I'm currently on 10mg as on week 4 and symptoms seems to resume for the last 2 days but then been ok again today. I haven't dropped to 5mg which should have been today. Maybe I should tomorrow to see how I get on.

The slightest thing seems to make me nervous because I don't want to feel how bad I know is possible.

I try to go to gym but been really off it for afew weeks but conscious I've put almost a stone on in about 8 weeks which is sooo frustrating for me.

I am also taking 4 pentasa and to be honest I have for almost 18 months but just before the flare started about 2 months ago my IBD nurse dropped me to 2 per day and I started to flare almost immediately.

Is 4 5ASA a day alot to be taking when not in flare?

Hi Carrie. When I've had course of oral pred before, I've been on about 30-35mg daily to start with for 2-4wks, before I start tapering down. How long were you on the full dose? You need to have a full dose for at least 2wks before tapering to get the flare dampened down/under more control. I had pentasa before, but it stopped working for me. I've been on balsalazide since about nov 14 with success, but following a week of gastritis in may, my colitis flared up again, & max dose of 5asa balsalazide not helping with symptoms last 5wks. I had a colonoscopy on saturday where they found another polyp (had one 3.3yrs ago) in the right colon which they removed & lots of biopsies taken throughout colon, but they could not see any visible to the eye inflammation in the colon in general, so now have to wait for biopsy results before going forward any further. Gone off at a tangent a bit there... when i had pentasa I think the max dose was 4.5g daily - you can check this by looking on the patient info leaflet with your pills or online info on pentasa will probably tell you what the max dose is. From what you say hun, it sounds like your reduction in dose of pentasa may have triggered your current flare. When you start a flare, the normal course of action is to put you upto max dose of your particular 5asa drug - pentasa for you for 4wks, then if that doesn't bring you into remission, they consider steroids (depending on your history/frequency of flares). Have you been on the max pentasa for 4wks yet? xxx

Hi Diane,

Thanks for your message. I am back on steroids.... I initially stated on 30mg and tapered down but that didn't work.

I have since had another colonoscopy and I have been diagnosed with pancolitis so I'm currently back on 40mg for 2 weeks then start tapering down.

My face has twiced in size which is really upsetting as I've lost alot of weight recently which I needed so have been dieting but it's all just gone back on however the steroids are currently working... Just making me very tired and always hot (I'm usually freezing).

Fingers crossed they keep problems at bay for a long time as I'm starting a new job next week and I'm loathed to take aza as I don't like the side effects or regular blood tests.

Thanks for your message. I hope your daughters is keeping her problems at bay. x

Hi Carrie. so sorry you have now got pancolitis. glad the steroids are helping things, the side effects luck puffy face will go when you come off them as i had experienced. did you talk to the people in your new job? if you're worried about taking aza, ask your specialist about 6mercaptopurine as an alternative. same group of meds as aza, but more tolerable by most patients than aza. you really have to consider it as long term control med though. Good luck with your new job, & please keep us posted on your progress on here. Take care hun. xxx

Hi Looloo,

I haven't started the new job yet. I start Monday. I'm not going to say anything in the beginning as it really worries me and I don't want to start off feeling uneasy.

I'm going to be in the steroids for another 7 weeks when I start the job so hopefully they will keep problems at bay for awhile.

I haven't heard of 6mercaptopurine I will ask them about it. I had an appointment with the consultant a couple of weeks ago and he said (as you did) that I can't take steroids and aza at the same time. So they haven scheduled a telephone call with me for in afew weeks time (close to when steroids are ending) to see what happens next.

Thanks so much for all your replies. You really are very helpful.

Fingers crossed I have a good run symptom free for while.

I finally went to gym a couple of times this week which is a first in many many weeks.

Thanks again Carrie x

Hi Carrie. I understand about not talking to them at your new job about it. its a personal choice, & you are always hopeful you will be well enough not to have to bring it up as an issue, but please be mindful of yourself going forward; don't feel under undue pressure not to talk to them about it once you have your feet in the door, especially as you made need time off for appointments (that you must go to) if you start immunosuppressant meds.

The aza I'm pretty sure thats the first one they try automatically, but at one point, i was nearly put on it so looked into it a bit. the 6mercaptopurine is also an immunosuppressant like aza, but its supposed to be more well tolerated & less likely side effects; they often try it if aza doesnt suit someone. if you go to the crohns & colitis website & find the bit on meds it tells you a bit about it. there is nothing to stop you discussing this with your consultant as trying first instead of aza, if after you have looked it up, you also think it would be a better med for you to try first as its more likely to be tolerated better. my hubby's accountant has been on it for 6yrs for her colitis without problems from the med or flares. he said she looked like death warmed up before she was on it, now she looks healthier & has put on weight too.

My biopsies came back within normal limits, & my gastro consultant just left me in limbo saying in his letter we would just "catch up" at my next appt end of august!!! I wrote him a stern letter saying what am i supposed to do now - I still have ongoing symptoms that are keeping me off work & virtually housebound, had to cancel summer hol in july too. He sheepishly rung me a couple of days later & has agreed to my request(after pointing out many facts to him) to retest me for coeliac (done in 2012 negative) & do a small bowel contrast mri(next week) as both these areas would produce the positive calprotectin stool test result i got recently!!.

proper diagnosis is so key to getting the right treatment/stop symptoms; whilst i am sad for you that the colitis is so widespread now Carrie, the flip side is that you can now go on to have very accurate treatment & hopefully get your life back long term(like my hubby's accountant).

Sincere good luck in your new job next week hun, but remember to keep looking after yourself too.

Thankyou also for your kind comment about me being helpful. I have a calendar on my desk at home which says " those who are happiest are those who do the most for others". Its very true for me.

Take care , & keep us posted on here of your progress.xx