Decisions, decisions - aaaarrrrrgghh!

[shazamataz]

Hi all,

I have a bit of a mixed bag of questions and advice to ask for and hope some of you may have had experiences which can help.

Without going into all the details (I have done a Your Story), I was diagnosed with moderate Crohns in my terminal ileum with abscesses ( and i have just found out two fistulas going from an abscess to the pelvic wall) just 2 months ago. Am on tapering Pred over 3 months (down to 25 now from 40 and all feels good).

I had a follow up on monday with my GI and he wants to put me on Imuran. This scares me a LOT, especially this early on in the disease process for me. I asked him about Entocort and pentasa and was told that pentasa doesn;t work and that 'We don't use Entocort here'. I spoke to the pharmacists today and they told me Entocort isn;t funded here in New Zealand.

When I said what happens if i just decide not to try it yet, he basically said it was a big risk and up to me. He has given me 2 weeks to mull it over and in the mean time started me on Flagyl 200g 2x a day for maintenence I guess as I have no symptoms of the infenctions (this is what they gave me in hospital and I had no side effects that i noticed on it).

One of my big/most immediate comcerns is that I am booked to photograph three weddings (my little side earner) this year at end of October-mid november. My taper finishes 2 weeks before the first one. I explained to the doc that i needed to get through till then as I DESPERATELY need the money and also can't let these people down, so how about we manouvre things so I don;t have any major drug changes etc going on then - he said no can do - B**tard!

Thing is, everything feels pretty good right now (on 25 mg). I am hoping it stays that way. I am doing what i was pre hospital/pred, which is less than a normal person, but functioning in working and studying part time and such. Havent had to cancel anything in 5 weeks post hospital. Very tired, but then I have been tired for 12 years so no surprises there! I have heard people have trouble coming off the pred, but then the odd person who says it puts them in remission for some time afterwards?

So, better get some questions out before you all fall alseep:

Is Entocort used as a 'maintenence' drug or only for flares?
Doesn't Imuran have LOTS of nasty side effects?
Is it possible for someone to come off pred into remission?
Can fistulas 'heal up' and go away or are they permanent?
Can a person stay of Flagyl for an extended period and does it help much? - I was hoping this may tide me over til no more major events that I can;t miss.

As i said, my insides are doing well right now. I guess I am nervous about it all turning to custard when I have these weddings.
Help!!!!!

thanks if you have read through all this and hopefully some of what is shared may help someone else too

Still trying to get my head around all this and FREAKING out a bit!

Shaz

 

[beth]

From my understanding, fistulae are bad news and have to be treated seriously. Imuran (aka Azathioprine) is not what I would call pleasant but if the doc is recommending it, I would go for it - my surgeon and GI both said it's good for healing fistulas.

I think what I've learned this year is that if the doc is saying jump, then ask how high sooner rather than later. It gets the worry over with quicker. Either you'll tolerate Imuran or you wont, and the sooner you find out the better. It does have lots of potential side effects, but so do a lot of other drugs! I took a couple of months to decide whether to try it, or not, and now regret the time wasted thinking/worrying about it, especially as the delay seems to have allowed Crohn's Related Arthritis to take hold.

Perhaps it's a case of take the doc's advice, or find another one? - he does seem a bit arrogant but it seems to me that goes with the territory.

Entocort I dont know about.

Flagyl is Metronidazol, which I do. It may help your fistulae heal, or as in my case AB's simply made my perianal abscess go away for a bit and then it came back worse than before. But IIRC lots of peeps here are on it and find it helps.

As for Pred... my GI said it's good for getting you into remission temporarily, but you usually need to do something else as well to maintain it. Hence the Aza.

It's a lot to fight and find your way through isn't it!

 

[fenway1971]

Hi Shaz,
Our stories are similar. I was on 5-ASA (asacol) until I flared and found out I was sensitive to it and it made my symptoms worse. I then went onto prednisone - kicking & screaming. But, it magically cleared my symptoms. As I was tapering, the GI said I need to go on 6-mp (same drug as Imuran). Again, I panicked and resisted but eventually went on it. Here's my 2 cents:

1. Few side effects for me on 6mp/Imuran. Initially, lots of fatigue, but I'm slowly getting better. My body rejects more than 50mg per day as my bloodwork came back abnormal.

2. Long-term, I'm nervous about what it might do to mess up my body, but I wasn't willing to take chances and go drug-free. I'm sticking to the low dose (50mg) and hoping that does the trick. I would be nervous on 150mg per day which is what my GI originally intended. There are days that I get scared and want to stop taking it.

3. Steroids are really not good long-term. Also, going on and off prednisone is not good either. The side effects of pred were A LOT worse than 6-mp.

4. After 6 months (next month), I plan to sit down with GI and come up with strategy for weaning off this drug. It'll have been 9 months of remission which hopefully will have given my body time to heal. I went 32 years without any meds and would like to think I can tolerate no meds again. Then again, I'm Mr. Optimist.

 

[Crohn's_Doll]

I can understand your worries Shaz. I'm one of those odd people who went into remission after a course of prednisone (long remission). I didn't have abscesses that I know of so that might be all the difference.

Meds effect everyone differently, it's so hard to know how the Imuran will effect you until you try it.

The thing is, it takes us awhile to start feeling good again on weeks or months of meds. I wouldn't want to see you go backwards in your healing. This is a hard decision to make, if only we know 100% if this is the right path or not.

I have never been on Imuran so I'm not the best person to give advice. But these well seasoned crohn's people know the ropes pretty well.

I'm sorry you are freaking out a bit, I know how that feels, my appointment is tomorrow and I'm just glad I can get air into my lungs LOL.

Wishing you the best of luck and strength in making a decision.

 

[shazamataz]

Thanks guys.

It's just been a rough couple of days. I was feeling very optimistic and good until I had that appointment on Monday!

Interestingly that since then I have not only been FREAKING, but have started getting pains again - no coincidence, I expect it is stress related rather than suddenly becoming inflamed again overnight!

I suppose we all, eventually, have to get used to the ida that this is a permanent condition - I just haven;t been ready to go there just yet.
One of my big concerns is the fatigue with Imuran as I am already exhausted and struggling each day and that is on pred and without any symptoms!

I look forward to getting to a place where every gurgle or pain doesn't have me panicking.

Much love
Shaz

 

[chubb]

Just wanted to quickly let you know that i am on azathioprine (imuran) and have been since just after leaving hospital. My consultant told me that he didn't think Pentasa would be enough to hold things at bay and recommended Aza as the best way to go. He said it is better to attack the crohn's with everything we have than just maintain the condition on as little as possible and end up in surgery...

So currently i take both Pentasa and Azathioprine (75mg). And i have had NO side effects that i can tell from them, no major tiredness etc. I have blood tests every other week to monitor things but am hoping this can be reduced soon (altho it's really not a hassle, doc's is right by my house and on my way to work)...
Phew, this was meant to be a teeny post but has turned out not to be! Whoops. Anyway, don't discount the Imuran just cause it sounds scary - IMO surgery is scarier?!

Good luck with the decision

 

[shazamataz]

Thanks Chubb, its good to get some good feedback on these things.

Its really starting to hit home and I am having trouble processing everythign. Perhaps i need to STOP reading! I just read that fistulas are part of more 'aggressive' Crohns and that scared me - does that mean its come on suddenyly and i am just going to get really sick really fast? AAAAARRRRGGGGHHH!


Or perhaps fistulas can heal themselves eventually? here's hoping.

Anyway, looks like Imuran ma be what i just have to accept and get on with eh?

shaz

 

[seaofdreams]

Wow, our treatments are very similar, I have just come home from a nasty overnight hospital visit all geared up with the Imuran, it's a terrifying idea. I keep looking over at the ominous boxes sitting in my medication tub, making excuses about why I should wait until tomorrow to start it =/

 

[Regular Joe]

Hi Shaz,

I understand what it means to be "freaking" and getting worse symptoms when you get stressed. I read a lab report just recently, and all hell broke loose. It didn't matter the report was my record seven years ago. it stressed the hell out of me a few weeks ago when I requested it. Nothing changed. I ad "it" back then, I just didn't know it. So I freaked out about "back then" just a couple weeks ago. Sent me right into bathroom 5 times.

You're right about reading things, and into things. I think there's a little hamster or mouse in my head, and when I read too many things, that little fellar gets on one of those running wheels and starts flying at top speed and going nowhere as fast as he can.

I'm pulling for you, Shaz. You're going to make it through. You give me hope.

 

[shazamataz]

Thanks guys

 

[braveheart]

I've have had 6mp for years and no side effect came up by now.

 

[penny3]

I was on Imuran for 5 years and was told I'd be on it for the rest of my life, which I really did NOT like the sound of. I did not personally find it to help my symptoms, and I stopped taking it as well as Humira, against my doc's recommendation. I have found that really just eating a liquid or soft diet (I posted my trouble transitioning to it about this a little bit ago) helps me way more than meds. Honestly, it's so hard to do, because a lot of social activity is based around food, but I feel infinitely better now that I've sucked it up and just done it. I ordered this book on amazon that I can't wait to come...called "Beat Crohn's" which is a guide to the soft/liquid diet. I saw some people post about it earlier on this forum. Apparently it works to put something like 80% of people in remission (those who actually stick to it). I really hope you get better soon and find something that works for you!

 

[shazamataz]

Thanks guys. The book sounds interesting. I certainly don;t like the idea of having to be on a weird/soft diet for the rest of my life but it must beat heavy medication!

 

[Cog]

I was on Entecort for quite a while (years rather than months) for me I had no great side effects. I lasted 8 weeks on Imuran and discovered I was allergic to it. I did see in the recommendations that entecort is supposed to be only for 8 weeks or so. Ah well you have to push the envelope. We are all different so it is difficult to judge the best option - Doctors and patients alike

What ever you take I hope it works for you - it has to better than prednisone

 

[penny3]

oh--shaz--the soft diet isn't for the rest of your life. it improves symptoms in as little as a month to 3 months, depending on how much inflammation you have, and then you add back the good stuff! i hope everything went well.

 

[shazamataz]

Thanks.
My next appointment with the GI is Monday. I have seen my GP and she reckons it should be okay to 'extend' the prednisone for longer (slower taper and then hopefully maintain at 5 mg) to get me through the events I have coming up (wedding photos and a trip away to see family at Christmas) without having to do any serious medicine changes since Imuran can potentially cause problems.
Originally the taper was for 3 months. I;d be interested in anyone's feedback in using it for 6 or so. is this really a big deal in the long run? It certainly would take all the stress/worry out of the next couple of months since it seems to be working well and I can deal with the side effects - though not too fond of the beard!

 

[fenway1971]

Shaz,
I was on prednisone for over 9 months from Sept - June of this year. I'm glad to be off that drug, however. The long-term effects are pretty bad I hear. Some have been on it much longer. Do a search - plenty of threads on prednisone.