Aziathropine and Injections
Posted , 4 users are following.
Sorry for another long tale.....
I got my "problem" by food poisoning from chicken in June 2014.
I spent 2 weeks in hospital and on leaving my consultant advised I could now have UC.
To cut a very long story short I've had numerous signoidoscopy and a colonoscopy plus a hostologisy investigation which all came to no avail and only yesterday agree another flexi sig the consultant told me I have very servere UC. He was horrified at how bad it was and that I wasn't hospitalised.
On this occasion I've been in flare for around 3.5 months I've been on 4 x mexalazine a day practically since the day I lett hospital with a short break as advised and the symptoms came back. I am also on another 8 week course of steroids and I have just finished a 6 week course which doesn't seem to have done the trick as symptoms only stopped for 1 week mid way though then came back.
Anyway following yesterday's flexi sig I have to attend clinic on Monday as a priority as I'm in such a bad way.
I'm really not sure how it's got this bad until they have realised.
My consultant yesterday who I had when I got food poisoning but had to refer me to specialist IBD was shocked I have never seen the IBD consultant - only nurses. He specialises in gastro liver more than IBD which I'm heartbroken about as he's amazing.
He said I am going to require azaprathine (which will take 3 months to start working) and have some injections and somethin else which I can't remember aswell as the prednisolone and Mezalazine.
Does anyone know what the injections are? Do you take mezanazine and azaprathine?
I'm worried about all the side effects?
Any advise would be appreciated?
May I also point out that since leaving hospital around 2 years ago this is the worst flare up. The only other 2 flares I have had have only lasted about a week or so and that's all.
I wonder if the azaprathine is abit keen?
I'm also worried as I am working my notice now and start a new (hopefully a lot less stressful) job in 2 weeks and I really need to get better for then. Also having a new job I won't be able to go for all the blood tests that are needed when taking them!
Sorry for the essay. It wasn't intentional. ??
Thanks Carrie
0 likes, 9 replies
sarah63945 carrie303
Posted
Hey Hun
I've been on aza since I was diagnosed in 2003! Had no problems at all but having the regular blood tests is vital.
X
carrie303 sarah63945
Posted
Thanks Sarah. The blood tests.... I starting a new job in 2 weeks and they know nothing about all this. I can't be taking time off to go.
Do your hospital do early mornings / late evenings?
I'm just wondering how I am going to get around this?
sarah63945 carrie303
Posted
Hey no they don't I have to take time off for appointments.
You need to tell them before they put you on aza as you have to have the bloods tests I'm afraid. U might be able to get those at your docs early or late?
Your work have a duty of care towards their staff so shouldn't be a problem x
carrie303 sarah63945
Posted
I've not started yet so really don't think it's appropriate to tell them on day 1.
The worry is making me worse I'm sure. ??
sarah63945 carrie303
Posted
What type of job is it?
Every Job I've applied for had asked about medical conditions or have you just bit told them?
carrie303 sarah63945
Posted
It's a service coordinator so an office based role. I haven't had to do a medical or anything.
I just feel like I need to get my foot in the boo'd before I start asking for time off for hospital appointments. It doesn't look good to start a new job with I need time off does it.
Hopefully they will let me delay starting it... Although I'm really worried about it anyway as not convinced it will be right for me given my history.
looloo43 carrie303
Posted
Hi Carrie. sorry to hear you're in such a bad way. if the steroids aren't working to calm your flare, then next step is usually immunesuppressant drugs - which is what azathropine is. Did they give the steroids long enough on a reasonable dose first? was it prednisolone oral steroid? (the most effective one). You should ask your specialist if you need any vaccinations such as flu, pneumonia etc before you start immunosuppressant meds-its often necessary as your immune system will be compromised by azathropine. because colitis is an autoimmune condition the drug dampens down your immune system which in turn should calm the colitis. Also ask about if its ok to take steroids at the same time (like you have been told to) as i "thought" you weren't supposes to have steroids & immunesuppressant drugs at the same time - best to check it. Hope you start to feel better soon, keep us posted. I don't know what is the best thing to do about your job, I tried to put myself in your position - I always think honesty is the best policy really. Perhaps you could get in touch with the person that interviewed you & ask to go in & have an informal chat with them. I think that's what I'd probably do. xxx
carrie303 looloo43
Posted
Hi Looloo,
Thanks so much for your response. Your very good at it.
I have started making a list of questions so will add yours to it.
I have had the flu jab it was probably around November I had it. Although I could check that. I think you can only have 1 a year can't you?
I was on steroids for 6 weeks so maybe that wasn't long enough. My case has been very up and down and nobody really knew what was happening until I had this camera.
I have definately been given the UC diagnosis now which is progress.
Maybe I should have been on steroids for 8 weeks in the beginning this time. As I haven't had a flare for over a year and even then that only lasted about 10 days and didn't take any additional medication other than mexalazine.
I feel like aza would be a big step to take if its not essential. I don't know what level other people have been at when they have put on aza.
Do you mind me asking what you take and how it's developed as you've taken things?
Thanks again, really appreciate your input. xx
looloo43 carrie303
Posted
Hi Carrie. Its good you have a definitive diagnosis of uc as that helps target accurately what meds you should have. I'll tell you a bit of background with me - my problems began in 2012. it took months, but i was diagnosed with colits & ibs-d. later i was also diagnosed with fructose malabsorption & bile acid malabsorption. i take ongoing regular meds for the colitis & bile acid malabsorption & manage the ibs-d & fructose malabsorption with a quality liquid probiotic & diet adjustment including a low residue diet. I had gastritis for a week in may, & then a colitis flare followed straight after & I have been off sick since. My stool test for calprotectin was 280 which historically for me is high. I had a colonoscopy a few weeks ago & they removed a 2nd polyp from my ascending colon & did biopsies all around colon. despite 60+ really watery bowel movements on the friday evening & saturday morning with the bowel prep they give you before colonoscopy, they still had to flush out poo from the junction of the colon & terminal ileum which i thought was not right. the biopsies came back all within normal limits & polyp was benign. but i am still unwell with all symptoms of a colitis flare except bleeding. my colitis med is balsalazide & it has controlled my colitis well until now for about 18mths. it doesnt give me any side effects, & i have been on max dose for last 6/7wks but it has not reduced my symtpoms although the colonoscopy results were normal. this med is formulated to release only once it gets to the colon, which is why i said earlier its important to get definitive diagnosis as meds need to get to right area. after writing my consultant a stern letter (as he left me in limbo with no help or progress following my essentially good colonoscopy until i see him again at end of august) he has agreed (without any resistance) to retest me for coeliac disease & do a contrast (with dye) mri scan on my small intestine(both these conditions can produce positive calprotectin stool results). if the mri doesnt show any narrowing or obstruction he will likely go on to do a capsule camera pill endoscopy of the small intestine(mri has to be done 1st or camera pill can get stuck). so i now could have other problems that would explain continuing symptoms, why my balsalazide isnt relieving them (it wouldnt if small intestine problem as it only works in colon), & why there was still poo at the junction of ileum/colon during my colonoscopy despite a mega clearout with the prep. My consultant will not give me steroids as no active colitis inflammation found on colonoscopy. when i was on oral prednislone before, i had doses of about 35mg per day for about 3/4wks depending on improvement gained, THEN started tapering down over next 4-8wks sometime, so i would've been on them depending on severity of flare ( i seem to get about 1 a year) i would've been on them anywhere from 8-12wks. at one point they were on the verge of putting me on immunosupressants but we(me & my ibd nurse) decided to try another 5asa - ipocol - which my mum has been on successfully for her colitis. it worked for a little while (months) then didn't help. this is my second time on balsalazide - it just seemed to stop working the first time round, but gave me the most relief for the longest period of time, so i went back on it - & here we are gain now 18mths later with problems again. i think you need to assess 1)your time/dose on steroids -was it high enough for long enough before starting to taper down. & 2) have they tried you on another 5asa? since my diagnosis i have been on(all oral) sulphasalaine, pentasa, balsalazide, ipocol, now back on balsalazide since nov 2014. sometimes people find they have a good period on one drug, then it just becomes ineffective. if you've only had 1 drug, it may be worth trying another 5asa before resorting to immunosuppressing drugs. i also had various enemas to help during flares so you treat from both ends! you can only have 1 flu jab a year, but i also had to have a pneumonia jab (done every 3 or 4yrs i think) when they were close to putting me on immunosuppression. i did look in to immunosuppressing drugs - there is another one called 6mercaptopurine which is supposed to give less poss side effects, & better tolerated, so you could ask about that if your consultant still wants to go down that line. Many people get on with aza, some don't. I know a lady on 6mercaptopurine & she gets on well with & had no flares in 6yrs. But do discuss what i said above with your consultant - have they given the steroids a fair chance? prednisolone is more effective than budesonide & clipper generally. is it worth trying another 5asa first before resorting to immunosuppression? sorry for the long post hun, just think its important you know as much as possible. Have you decided what to do about your new job yet ? xxx