MRI tomorrow.....

[Ands]

First MRI tomorrow. All anxious but hopefully we can start looking ahead then. Consultant agreeded to see us as well. Sure Joseph is having a flare but at the moment still on no treatment. Exhausted, Irratic BM, painful tummy, sore red bum and growing mouth ulcers. Surely this is a flare and not him just adjusting.....

As so many people have said I hate this.

On a positive note he managed to achieve a distinction for Grade 1 Piano!!!!!! Sometimes he is stronger than us.

X

 

[my little penguin]

Good luck weds

 

[Jmrogers4]

Sending you loads of support, good luck tomorrow.

 

[upsetmom]

Good luck

 

[Sascot]

Good luck for the MRI. Hope they manage to get this flare under control soon! Well done to him for the piano exam!

 

[Ands]

MRI went ok. He was so brave, although so anxious. Managed to drink most of the drink, didn't think it was that bad (this is the boy that drank modulan for 6 weeks!!). Saw dr after, although not with the results obviously. We will start 6-MP tomorrow and if MRI shows anything start the steroids again as well. Also pleased that they are referring him to child syc in order for him to discuss ways of coping. We are blessed with a fantastic dr.

 

[Sascot]

That's really good the MRI went ok. Hope the results are good. Good luck with the 6mp - we have decided to wait till after Christmas before starting it. Let us know how it goes!

 

[my little penguin]

Sascot- may I ask why you are waiting to start the 6-mp?
It takes over 3 months to become effective so waiting till after the holidays doesn't seem to make sense since the longer you wait the longer it takes to become effective and the higher the likelihood of having another course of steriods needed increases.
Plus 6-mp side effects usually take a while to show up since it takes a while get in the system.

Fwiw DS had no real side effects with 6-mp that he could see or feel.
Only his blood work was off for his ast and alt about 3-4 months into it.

Just curious not judging ....

 

[Ands]

We have also had the discussion about when to start 6-mp. However as Joseph is so low at the moment we feel that it is better for him to start now so he knows he is at least taking a medicine which will hopefully help, albeit in the long term.

We are keeping fingers crossed that we get no side effects, I feel we are due a little bit of luck :ybiggrin::ybiggrin:

Dr didn't discuss what time of day to take it but we are opting for the evening, I assume this is ok. Although he had to stop aza, when he was taking it the evening seemed the best time for that.

X

 

[DustyKat]

Thanks for the update Ands. :hug: And what a champion your lad is, kudos to you both!

I hope he does well on the 6mp and he soon feeling fab! Good luck with the results!

I have seen quite a few folk on here recommend taking Imuran/6MP by either splitting the dose or taking it in the evening/bedtime to alleviate the nausea it can sometimes cause when initially taking it.

Dusty. xxx