Newly Diagnosed and searching for Advice

[Equestrian Girl]

I am looking for as much advice as possible.

I have only been on this Forum for a couple of months now........since I was recently diagnosed with Crohns in Jan/2012. For 18 mths. prior to that........both my G.P., Internal Medicine doctor and 2 other G.I.'s said I had the worse case of Irritable Bowel Syndrome they had ever seen (.......well, now we know that was all WRONG).

Since I am still trying to get this "flare-up" under control........I am still taking Prednisone......and Mezavant...(and some other Anti-Spasmotic drugs).......and I was recently started on Imuran (50 mg.) on Feb. 9, 2012.

So, after approx. 3 weeks on Imuran........the only thing I notice is that I am getting some nasty headaches (when I never really had any headaches before). The Imuran does not seem to be doing anything else in helping the pain in my gut.

My intestines are still on fire and I have horrible fatigue and I still have a number of B/M's each day. I have been told that Imuran can take 2 to 3 months to work.....(as I said earlier.......I am only on the 50 mg. dose). I see my G.I. again on March 9th.

I'm not sure if I need a stronger dose - or if what I am going through is "normal" ?? Did this happen to anyone else when you started on Imuran ?? Any information you feel like sharing - would be greatly appreciated.

I noticed another "horsey person" on this thread.........and I am dying to get back on my horse and continue her training. It is killing me to watch others ride my horse for me (I have been riding for close to 25 yrs. and I am now 33 yrs. old).

I really need to get my life back.......and would appreciate any comments from one and all. Thanks very much

..........from Equestrian Girl in Ottawa -Ontario, Canada.
:canada_flag:

 

[Lisa]

Hi there...I am one of the other 'horsey people' on here.....

What dosage of Prednisone are you currently on? The Imuran does take time to build up - when I ws on 6-MP I was taking 75mg only.....so the imuran may need to get bumped up....

Hopefully the 9th will be here before you know it - but if you really feel bad don't be afraid to call them up and let them know!

 

[Equestrian Girl]

Thanks for the advice on Imuran

Many thanks PasoBuff for writing back to me. I am currently on 30 mg. of Prednisone. (I did start off at 70 mg. of Prednisone.......and I have been weaned off little by little each week........to the 30 mg. level). The G.I. said he will likely keep me at this level for now..(not the best news I've heard......but if it helps then I'm all in favour of it).

I hope the Imuran starts working for me soon.....(as I mentioned earlier - I have now been on it for 3 weeks.....and so far - I do not notice anything positive). I really am getting frustrated with continually feeling so lowsy. I just want to get back to being a productive member of society..........instead of lying in bed with a heating pad. Our household cats can't understand what is going on......but they are enjoying my company at home - and they REALLY like the heating pad. (I'm so glad someone is enjoying this whole situation !!)

It is great to hear from others - who have "been there.....done that".

Equestrian Girl - Ontario, Canada :canada_flag:

 

[TerminalIleum]

Having been on Immuran for a few years now, I can tell you the dosage is weight dependent. I take 200mg daily, but am around 185 pounds.

My guess is that if you've had this flare for a few months now, you've probably lost a good deal of weight (I lost about about a third of my body weight when I was initially diagnosed) and thus will probably have a lower dose than most, at least initially.

 

[SnowDay]

Many thanks PasoBuff for writing back to me. I am currently on 30 mg. of Prednisone. (I did start off at 70 mg. of Prednisone.......and I have been weaned off little by little each week........to the 30 mg. level). The G.I. said he will likely keep me at this level for now..(not the best news I've heard......but if it helps then I'm all in favour of it).

I hope the Imuran starts working for me soon.....(as I mentioned earlier - I have now been on it for 3 weeks.....and so far - I do not notice anything positive). I really am getting frustrated with continually feeling so lowsy. I just want to get back to being a productive member of society..........instead of lying in bed with a heating pad. Our household cats can't understand what is going on......but they are enjoying my company at home - and they REALLY like the heating pad. (I'm so glad someone is enjoying this whole situation !!)

It is great to hear from others - who have "been there.....done that".

Equestrian Girl - Ontario, Canada :canada_flag:

Oh man. I know where you're you're coming from EG. I really just want to get back to being like everyone else, I feel so useless . I hope you get the help you need soon. Oh and i'm a horsey-person too, in fact I used to be a jockey .

 

[hurla31]

Hey EG. I was tapering off my prednisone and got to 15mg, also been on Imuran 100mg for about 5-6 weeks. My GI told me today that its going to take 3 months for the Imuran to kick in, which means I'm back to taking 40mg of pred.(which i hate)As, for side effects of the Imuran, I just get nauseous, no headaches. Good luck, I hope the Imuran works for you!

 

[Twiggy930]

Hello Equestrian Girl,

My son (10 years old) started Imuran at about the same time you did and is also on 40 mg of Prednisone. We were told to start weaning off the prednisone (5 mg reduction per week) after being on the Imuran for 1 month. The Imuran dosage is being increased by 25 mg every 2 1/2 weeks pending good results on the blood tests (he's at 50 mg now). Currently he still feels awful and can only make it through about 2 hours of school each day before he is exhausted. Haven't noticed any side effects except for some faint nausea. I hope it starts working for you soon!

 

[Equestrian Girl]

Thanks Twiggy930 for your reply.....

Thanks for writing back. I hope your son is going to get some good results soon. I will let you know if I have any success. Right now (after 3 wks on 50 mg. Imuran)..........I can't say I notice anything positive yet.

I'm back to see my G.I. on March 9th........and I'm going to ask him about increasing the Imuran. We'll have to see what happens.

Good Luck to you and your Son.

Equestrian Girl - Ontario, Canada :canada_flag: