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Terrified about taking Immunosuppressants & completely overwhelmed

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Ulcerative Colitis
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Posted 12/10/2014 11:28 AM (GMT 0)
Hi everyone... I've been battling a pretty hard core flare for about a month and a half now (my first 'full' flare up since my diagnosis last year). My GI first of all tried 40mg of Pred orally along with my daily 4g Mesalazine and Salofalk enema which just wasn't touching me - finally came into hospital for a Colonoscopy and they could only reach the second bend because things were so bad in there, GI said he was completely shocked at how inflamed I was and admitted me to hospital the same day.
Now been on IV steroids for about a week and bleeding has subsided a lot, only going to the toilet 4-5 times a day now which is great, but obviously they want to start introducing me back to oral Pred in the next day or so.
I was diagnosed with mild UC last year, but they're now saying that my case is very severe. - My GI is now very insistent that I start taking Azathioprine or 6mp as he thinks that after coming off the IV it's very likely that I'll flare up again.
I'm only 19 and the thought of taking immunosuppressants is absolutely terrifying me. The side effects (I have such a huge phobia of being sick), the blood tests, not having an effective immune system, the chance of getting lymphoma, flu and pneumonia jabs... I'm just finding it so so scary and difficult to comprehend. I really don't want to take them, but at the same time I feel as though I'm running out of options and just can't handle any more flares, let alone the life changing prospect of having surgery.
Is there anyone out there that can give me some personal experience on 6mp or Azathioprine? Has it worked for you? What are my other options?
The doctors said about starting me off on a really low dose of 6mp to see how my body reacts, but that they've already done tests on my bloods and don't think my tolerance is going to be great. I just feel so completely overwhelmed. Thank you so much for any words of wisdom.

--------------

Currently taking:
Intravenous steroids 4x per day
4g mesalazine od
adcal d-3
15g lansoprazole o.p.d
heparin sodium injection o.p.d
1g mesalazine foam enema
3 nutricia forticip or fresubin prn
Mebeverin & buscopan for cramps
Various pain relief
Posted 12/10/2014 11:36 AM (GMT 0)
I have been on azathioprine since June this year after years of asacol just wasn't effective anymore. I like you was completely overwhelmed and so scared of the side effects. The first couple of weeks I felt a little out of it but after that I have had no side effects whatsoever. I was actually one of those people that couldn't metabolise the drug properly and so they started me on another drug called allopurinol which has now helped me metabolise aza well. I only take 50mg which is a very low dose and my doc says it's one of the safer drugs to take after mesalazine and can be taken indefinitely. I have only recently gone in to therapeutic level with the drug so am waiting for it to kick in now. Hopefully it will soon.

I was diagnosed at 18 with uc and i remember how scared I was. Things will get easier as well as you getting used to how to deal with flares better. There have been people on here who have had severe disease and still managed to get it under control.
Posted 12/10/2014 12:12 PM (GMT 0)
There's no other way around this: You need azathioprine.

I started it when I was 19 as well, and yes I was bloody terrified but I promise you it's okay. I know all the side effects sound scary, but you are so, so sick right now. Not getting this under control is by far the worse option. Yes reading all the side effects is scary, but (1) the serious ones are very very rare, (2) are mainly found in people who are on much higher doses than us, such as organ transplant patients, and (3) occur in people who have been on the drug for decades. It will just become a part of your life. There's nothing I do differently now I'm on aza except wear loads of sunscreen when it's hot out (I live in England so it's basically not even a problem).

Aza is very effective in most people, and most don't even experience any side effects. There are natural and alternative remedies, but right now these can only be tried alongside aza, not instead of. You're sick and need to get this under control.

If you let this get worse, you'll be doing much more damage to your body. I know it's scary, but the prospect of not getting better is even scarier.
Posted 12/10/2014 3:34 PM (GMT 0)
The steroids you are now taking are much worse for you than any of the immunosuppressants being discussed. I'm sorry that your disease has taken such a severe turn. I'm glad you are getting the right medical care.

What support system do you have IRL? Are your parents around to help you? Friends?
Posted 12/10/2014 3:40 PM (GMT 0)
I was on 6mp for years and I had really good luck with it. Maybe it will help you. It's way better than steroids and it's a low dose... Try not to be scared. The problem is that it doesn't work quickly and it sounds like your colon is in bad shape.
Posted 12/10/2014 8:36 PM (GMT 0)
Aza and 6mp are nothing to be afraid of. Many people on the forum use them and those medications help keep their uc symptoms under control. I use 6mp. I think putting the risk into perspective will help you greatly. The odds of the average, healthy person on the street getting lymphoma is 2 in 10,000 (or 0.02 percent). With 6mp or aza the odds are 4 in 10,000 (or 0.04 percent). On aza, you might get an extra cold per year and it might last 1.5 weeks instead of 1. You don't have to be a germaphobe while on 6mp. It's infections like UTIs, bronchitis, or sinus infections that they are talking about. You still have a functioning immune system just it isn't as effective so if you suspect you have one of those seek treatment rather than trying to wait it out another week before seeing a doctor. I'm a dumb guy who always gets cut and bruised up and even on 6mp I've gotten no common infections. The blood monitoring is weekly at first, then bi-weekly, then monthly, and tri-monthly there on out. It's a precaution when initially starting the med, frequency quickly decreases once you've gotten good test results back.
Posted 12/10/2014 10:21 PM (GMT 0)
taking immunosuppressants has WAY less side effects than prednisone. every day i was on prednisone was torture. i notice nothing when i take imuran.
Posted 12/10/2014 10:48 PM (GMT 0)
I was really scared to try Imuran, too.
Other than getting crazy itchy the day I was in the sun just a little bit, I have no complaints. It seems to make me tired, but that may be tapering the Prednisone. I needed to catch up on sleep.
They've doubled the dosage now. Passed the blood tests.
I'm not great, but this is the best I've felt in a year.
Posted 12/11/2014 12:47 PM (GMT 0)
this totally sounds like me , the Dr. could only go for 50cm with the scope and steroids wasn't helping even with high doses and IV and they were suggesting biologicals, but i insisted on trying AZA + the 4gm enema.

AZA gave me a huge nausea at the first month or two but later on it disappeared, don't be so scared of it and it worked far better than steroids for me.

Also switch to the 4g enema (not foam) and start AZA ASAP as it takes 3~4 months to start to work.
Posted 12/11/2014 7:37 PM (GMT 0)
The first two years after I was diagnosed with UC, three specialists strongly recommended I start using immunosuppressants. I resisted and am glad I did. Your situation is likely very different from mine and you may need the medication. Nonetheless, my experience may provide another way of looking at things.

When I was diagnosed with UC, I was tested for C. diff. The results were negative and I was put on the usual meds to improve my condition; Prednisone, Lialda, and Rowasa. My response was slow and I had horrible rectal pain. The specialist's approach to my condition was to push an immunosuppressant that I wanted no part of. I was so irritated by his insistence that I found another specialist to work with. After a year of working with my new M.D. and limited improvement, she too began pushing immunosuppressants. At this time I requested a new C. diff test from my primary care physician. The test results were positive. After a course of antibiotics my UC symptoms were reduced by 90 percent.

I've had a few bumps along the UC road after eliminating the C. diff, but all new problems appear to be the result of bacterial imbalances. The only way to know what's happening in the gut is to be tested, and tested more than once. We know that UC is a complex condition with no simple causes or cures, but it's best to make sure the problem isn't due to a simple cause before adopting a complex cure. In my situation accepting the advice of "experts" would have done little to nothing to help my UC symptoms because they were almost exclusively due to an infection.

Best of luck with your health. From what I read here, you will likely do well on immunosuppressant therapy.
Posted 12/11/2014 11:20 PM (GMT 0)
i can so relate to this! i had a horrible colitis flare last spring (at 23 years old) that kept me in the hospital for a month--lost 30 lbs, had to have IV nutrition because i could not eat, was back and forth to the toilet with blood all day and night. horrible. i'd never taken any meds for UC before because it had been relatively manageable, but my doctor basically gave me an ultimatum of either geting my colon removed or trying remicade. i had the same inner battle that you are having now--i didn't want to put remicade in my body AT ALL but i also didn't want to be without a colon or suffering from debilitating and dangerous symptoms. finally i said yes to remicade which i have been on since and i can LIVE and EAT again. i'm still slowly working to find a diet and lifestyle that works best for me in which i do not have to use medication, but for now i know that i need remicade to survive and figure that path out. just remember--whatever you decide doesn't have to be forever. you are very sick right now and need to feel better ASAP and immunosuppresants will do that so you can feel healthy enough to get out of the hospital and evaluate the situation with a calmer mind and body. i have been taking remicade now for 7 months and have not had any side effects. i've only been sick once (with a cold, right now)--other than that, nothing. try to live in the moment and think about right now and wanting to feel better.
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