Anyone on LDN and imuran?

[rollinstone]

Hey guys, I need some advice, so iv been on imuran now for about a week over a month, since going up to 100mg iv been struggling with nausea and headaches, just generally feeling pretty shit, I'm tapering from 6 months pred, currently on 15mg will be on 10 this Monday coming. My bloods have come back good, but I just feel like crap, do you think I should wait longer to see if it wears off and my body gets used to it? Im thinking of going the LDN route seeing as I'm almost weened off prednisone, and from what iv read on here almost everybody has responded well to it, like kev for instance, been doing well since 2007, sorry this is so long, I guess i'd just like to be able to get onto something that works and makes me feel well, I'd like to do the transition to LDN but I don't wanna risk flaring again, is it possible to be on imuran and LDN? Doctors here just don't really know much about it so I Havnt been able to seek medical advice on the matter... And they work by two very different mechanicisms so if anyone has been on both or has gone through the transition from imuran to LDN without flaring I'd appreciate some advice

 

[CeeCeeGo]

Hi Joshuaa
Sorry to hear that you are feeling yucky since you've increased your dose. I think though whilst your bloods (esp. Liver) are OK, it may be worth trying a couple more weeks to see if the nausea and headaches settle down. Are you splitting your dose and also are you taking it with food? Ginger biscuits and tea really helped my nausea and also strangely eating something small like toast reduced it a lot.
Take care hon and sorry I couldn't help about the LDN.

 

[rollinstone]

Thanks carol, you're very sweet, iv heard ginger helps, problem is I'm trying my best to stick to the SCD diet (although I have rice puff cereal) im Tryna avoid all processed sugars etc, been doing this for like 6 months now and I'm at the point of going insane haha, sometimes I think the endorphins I'd get from eatin something tasty would be more beneficial than avoiding unhealthy foods, I can definitely give it another week but anything longer I think it might be time to try something else, (the days are going way too long as it is) the doc gave me two diff meds for nausea none of which have helped maybe I should go down to 75?

 

[CeeCeeGo]

Oh Josh....
Going down to 75 might be a good idea.
I know how you feel about the headaches - I lasted 4 days with no sleep and eventually ended up in the ER and as soon as I stopped taking the med, they stopped.
I forgot about the diet you were on - does that also rule out ginger tea?
I'm thinking about you Hun and sending you lots of hugs. Gotta go to work now, so I'll catch up later. :hug:

 

[shalin]

Hello and sorry to hear about your issues on Imuran. Everyone is different but I can tell you that it can be a wonderful drug. I was on it for years and went into remission with it. It did give me headache for about 2 weeks but then my body got used to it. I was also coming off prednisone of 60 my for 4 yrs. I believe it was the mixture of all the changes that caused the headaches and back pain. I have never been on the other one but I do say give imuran a chance if you can it really did wonders for me. But like I said everybody system is different. Good luck.

 

[rollinstone]

Thanks buddy I appreciate the advice

 

[rollinstone]

Hello and sorry to hear about your issues on Imuran. Everyone is different but I can tell you that it can be a wonderful drug. I was on it for years and went into remission with it. It did give me headache for about 2 weeks but then my body got used to it. I was also coming off prednisone of 60 my for 4 yrs. I believe it was the mixture of all the changes that caused the headaches and back pain. I have never been on the other one but I do say give imuran a chance if you can it really did wonders for me. But like I said everybody system is different. Good luck.

Really helps to hear positive stories of it, how long did your remission last if you don't mind me asking, and why did you come off it?

 

[shalin]

I actually am still in remission. I just had surgery for colonic inertia which as my doctors say have nothing to do with my crohns. It has been 12 yrs of remission this oct will be 13 yrs.

 

[CeeCeeGo]

Hey Shalin
That's great news - how long you've been in remission.

 

[Jmrogers4]

Joshua,
I think I may have answered in another post but yes you can take LDN and Imuran together according to my sons GI. His suggested protocol was both together for 3 months and see how you are doing and stop the Imuran at that point if all is good.

 

[Kev]

Joshuaaa

Wish I could help. Imuran (Azathioprine) put me in the ER. It was partly due to the fallout from my trial of AZA that I ended up on LDN. I don't know if you can combine the two. I just know AZA crippled me with pain, put in the ER again, and gave me an allover rash that took 11 months to fade. Needless to say, I'm not a fan of it. And the close calls with the cancers were most likely due to it.

 

[rollinstone]

Thx for the replies guys, today is day 8 of nausea, hadn't seemed to settle at all, tends to go away right after I eat but then it comes back. Grrr so over it

 

[SueL]

Hi Joshua
I have read some great things about LDN but doesn't seem to be an option as far as my daughter's GI is concerned. She is weening off of prednisone and started on imuran in December. She seemed to tolerate the lower dose but once increased had headaches, diarrhea, and flu like symtoms. keep in mind that she was coming off of the pred. Ironically by mid February the sside effects seemed to improve. She was screened weekly and then biweekly to check on liver enzyme counts etc. unfortunately they continued to rise and we stopped the imuran march 1. They now have her on 6MP which is said to work for some ppl even though they cant handle imuran. Only two days in. So we'll see. Had same reaction to sulfasalazine and salofalk. Currently holding at 15 mg of pred.
Are you having regular blood work? If so and it is good I'd wait it out and see if the side effects lessen know several ppl who have been on imuran for years and doing well best to you! The GI nurse suggested to take the imuran just before bedtime with food and lots of water. Seemed to help

 

[rollinstone]

Hi sue I am finally starting to feel normal again, nausea has subsided substantially, I'm also tapering off pred, iv been on it 6 months! Way too long, I'm
On 10mg now so almost off it, hope the 6mp works better for your child, I'm hopeful that w the combination of a healthy diet, exercise, supplements and
Imuran I'm going to go into a Long lasting deep remission

 

[Catherine]

Glad to hear your feeling better.

 

[rollinstone]

Thanks cat, how is your daughter doing?

 

[Catherine]

Her Crohn's seems under control but still on 30mg pred. She has shingles and has been home a couple of days this week with a cold.