My update: Started Imuran today and back on Pred...

[duck68]

Well I went to my monthly appointment yesterday and as the Mezavant/Mesalazine (spell?) didn't appear to be working we are now trying with Imuran. And I am back on the Pred again now (40mg to start)...I was only off it for about 3 weeks!

I am worried about the side effects of the Imuran...it's a bit scary!

Let's hope this combination works...the Pred plays havoc with my white cells (makes them higher).

But I hope to feel better soon. My joints have been so sore recently I feel like I am 82 and not 42! Fatigue is ridiculous!

And I have a bad head cold which has knocked me for a six! I hope I feel better in all respects soon.

Hope everyone else is feeling ok at the moment - well as good as it gets for us Crohnies!!

I'm off to bed soon and hope to wake up better tomorrow...night all! utahere:

 

[DustyKat]

Hey Vicki,

Sorry to hear that the Mesalazine didn't work. I so hope the new combo does the trick for you and I wish you loads of luck with it..................................


:goodluck::goodluck::goodluck:


I understand what you are saying about Imuran and the side effects and I was scared s***less when Roo started on it. She has been on it 4 years now and has had no side effects and her regular blood tests have always been normal.

Keep us posted!

Dusty.

 

[Astra]

Hiya Vicki

Bummer about the Pred! When I came off it I suffered shocking joint pain, could hardly walk at all, needed a zimmer frame!
but a 2 month round of Entocort did the trick, no pains at all now.
hope your meds give you some relief soon, rest and take care
xxxx

 

[duck68]

Thanks lovely ladies! I always feel a little better when placing my updates/concerns on here...keeping my fingers crossed that it will all work for me.

I woke up feeling a little better (headcold wise) this morning...just as well - have 2 soccer games today with my kids and a whole day soccer carnival tomorrow!! No wonder I'm exhausted...lol...

Have a lovely weekend Dusty and Joan...xx

 

[MapleLeafGirl]

Hope the combo works for you. I am on the same combo for the second time. The first time I came off the pred and the symptoms back big time about three months later. I am now trying a second round. I am down to 10 mg pred and so far so good. Don't worry too much about the side effects with Imuran. For me they went away after about two months, and now nothing. Just keep up on your blood work.

 

[DustyKat]

Ah the lovely soccer carnivals. I swear every time we had one here it was blowing a gale, freezing cold and on the verge of snow.............................I don't miss them. :voodoo::ylol2:

I hope you continue to pick up Vicki and have fun with the Kids!

Lots a love,
Dusty

 

[duck68]

Thanks Dusty - the weather is quite sunny up here today and tomorrow is forecast the same - so should be nice!!

Kelly - what symptoms did you initally have with Imuran? I'd be interested to know what to look out for...thanks...

xx

 

[kittykat92]

hi vicki! you live right near me (Im from the Gold Coast)!!! When i started imuran last year i was a tad freaked out (though my mum was a whole lot worse!) Initially (symptoms wise) I felt a whole lot better..even though it took about 6 months for the drug to be absorbed in my system. Though sometimes, i find it makes me really tired. I just want to curl up and have a nanny nap!! which is funny because im only 17. I get joint pain all the time, and really for me imuran didnt make much of a difference..but it did make me feel a whole lot better for a while!!! I actually felt WELL which was amazing... well until my system crashed, now im going to try remicade as a last ditch effort

Hope everything works out okay for you!!!

 

[duck68]

Hey Kittykat - yes we are practically neighbours. We will be down your way for the school holidays - we love staying at Palm Beach - will be there for a week! Can't wait...

Thanks for your information on the Imuran - my dr did say it could take a little time to work which is why I'm back on the Prednisone again. But I must admit I feel a little better already - maybe it's all in my mind! haha...

Are you still on the Mesalazine as well as the Imuran? I stopped taking that because I think that is what the dr said...oh well, I'm sure she'll tell me next time I see her that I should still be on it...

I really admire you young people who are coping with Crohn's - it is hard enough for adults to understand and live with but I find young people an inspiration in regards to illness. I work at a school and there was a young boy there a couple of years ago who had ulcerative colitis really bad and ended up having a total colectomy at 9 years old - it was amazing the transformation in him after his op. Ironically, I had to go to the hospital with him on one visit to learn how to change his colostomy bag at school if he had any problems - this was before I was diagnosed with Crohn's!!

I hope the Remicade works miracles for you...good luck with that. And thanks for replying to my post...

 

[kittykat92]

yes im on 2000mg of mesalazine, though it doesn't really do anything, the doctor just wants me to stay on it as a precaution (and to try and keep everything under control!!) Imuran did help me for ages (almost a whole year) so i hope it lasts longer for you Thanks for your good wishes And Palm Beach is 5 minutes from where i live xD (Im from tallebudgera)

 

[MapleLeafGirl]

Thanks Dusty - the weather is quite sunny up here today and tomorrow is forecast the same - so should be nice!!

Kelly - what symptoms did you initally have with Imuran? I'd be interested to know what to look out for...thanks...

xx

Nausea, dizziness and extreme fatigue. I actually had to go off it for two weeks and start back up again on doctor's orders because I was vomitting as well, but when I went back on I had less problems. Thanks to advice on here I started taking it with my supper and that helped.

 

[kenny]

I take mine with dinner too. It helped that initial break-in time where I fell woozy. That went away in two weeks and I have not have a single problem with the stuff in all this time. Still taking the same does I started with.

It does take time to work because it works slowly at lowering part of your blood cell count. All it does is moderate the immune response to help slow down the attack against your intestinal lining. It has an amazing track record over something like 60 years at this point. At higher does it is/was used for transplant patients to help reduce the chance of organ rejection by the immune system.

 

[duck68]

Thanks for your responses. I just take all my tablets in the morning together...I wonder if that is a good idea or not! Anyway, I've been on them a week now so hopefully it will be my "wonder" drug...even though I wasn't keen on immune suppressants at all...I work in a school and deal with sick kids daily, so hoping my immunity doesn't get too low that I catch every little bug that goes around!

 

[Crohn's 35]

Too bad you are on some nasty drugs, but they do work. Prednisone should give you some energy and stop diahreah. I cant take imuran, tried many times, affects my liver almost instantly.

Have you not discussed any of the biologics with your doctor? Could be a route to go, but in any event for now, I hope you start to feel better soon! Keep us posted.

 

[duck68]

Thanks Pen...I must admist I have been feeling pretty good today...will see how the imuran goes - have my first blood tests in a week to make sure it is not affecting my liver or anything else.

I'm not sure about biologics - is that Remicade, Humira?? They sound scarier again...lol...

As it is I'm going on a cruise next year and because I'm now on immunosuppressants, my travel insurance won't cover me for illness...but who knows my medications may change again between now and April '11...

Pen - I've been meaning to ask you - when you have applesauce, do you eat it with anything or just on it's own?? I'm intrigued...

 

[DustyKat]

Hey Vicki,

Roo went on a school excursion to New Zealand a couple of years and was able to get insured through Cover-More. Is that who you tried?

Dusty.

 

[duck68]

Hey Dusty - I went through World Care (somehow related to Allianz I think) but when I bought my policy I wasn't on Imuran...oh well, will see how we go - still 7 months to go til cruise!! Maybe I'll be in remission and not need anything...lol...wishful thinking I know...

I'm more upset that I might not be able to have cocktails!!! Isn't that what everyone goes on a cruise for...hahaha...

Have a good weekend...we have a soccer semi final for my daughter...fingers crossed they get into the grand final...

 

[Crohn's 35]

Thanks Pen...I must admist I have been feeling pretty good today...will see how the imuran goes - have my first blood tests in a week to make sure it is not affecting my liver or anything else.

I'm not sure about biologics - is that Remicade, Humira?? They sound scarier again...lol...

As it is I'm going on a cruise next year and because I'm now on immunosuppressants, my travel insurance won't cover me for illness...but who knows my medications may change again between now and April '11...

Pen - I've been meaning to ask you - when you have applesauce, do you eat it with anything or just on it's own?? I'm intrigued...

Nope, just applesauce, but when it is homemade and you warm it up it tastes like apple pie without the pie LOL

 

[DustyKat]

Hey Vicki,

Roo was on Imuran when insured through Cover-More.

YAY, congrats to your daughter! Good luck in the semis!

Dusty.

 

[duck68]

Nope, just applesauce, but when it is homemade and you warm it up it tastes like apple pie without the pie LOL

Sounds good...might have to give it a go!! Thanks!

 

[Jer's Girl]

I have been on Imuran for a few months now with no side effects. Sorry you have to be on Pred. Good luck!

 

[acg101]

I second Jer's sentiments about the need to be on Pred. I was on Imuran for 8 years, from 50Mg to 200Mg (100 x 2 day) and I could not sleep and had joint pains at the higher dose.