Is this a flare but 6mp controlling it a little?

[Ands]

DS been on 6 MP since December. Although drs think he's in 'remission' I'm not so sure...

I really do think the 6MP has helped, his tummy pains had decreased, along with visits to the loo, he is growing and putting on weight.

However, his fatigue has been awful and we are increasingly seeing more and more mouth ulcers which if he stops using predisolone as a mouth wash just reappear, he's just had to use steroid drops in both eyes due to red inflammation and now tummy pain increasing. He is also drinking huge amounts at the moment, which although I know this is good for him, does seem a little extreme.

I guess what I'm asking is does this sound like a flare being kept under control by the drugs to a certain extent and we should just except this or does it sound as though 6MP is not working well enough.

We have dr appt next week but wanted to hear other people's experiences.

Thanks.

Ands xxx

 

[rollinstone]

hi Ands,

well I was on 100mg of Imuran (125) for a while and was in biochemical remission (my cal protectin was really low) and I recently flared, my calprotectin was as high as it has ever been though I didn't feel as bad as I did when initially Dx.d last year, anyway now im on pred, slowly tapering until I start remicade. Point is the 6mp could definitely be helpin the flare not be as severe but you will probably need something to kick it, when is the next GI visit?

 

[Ands]

His next GI is on Monday. He's just been violently sick on top of everything else! A lot of sharp tummy pain before hand, gave him paracetamol before he was sick!

He seems calmer now but now unsure if to wait and see if bug or get him checked out. I hate this illness.....

Xxx

 

[rollinstone]

If he was vomiting and has severe stomach pains be careful it's not pancreatitis which can be fatal. If he is vomiting you should take him to hospital, just to be safe, hope he feels better soon

 

[Ands]

Many thanks Joshuaaa. Ended up taking him to local hospital and they've kept him in. Bloods ok, crp is 12. They think might just be bug but not taking any risks and monitoring over night.

 

[Johnnysmom]

My son was on 6mp quite a while before he really reached true remission. He was diagnosed in October 2011 and started Prednisone and 6mp that same week. We were told he was in remission about 5 months later. I think it was simply because his CRP and SED rate had gone back to normal and stayed there. His symptoms went up and down over that time but the trend was that he was getting better. The only issue that really kept nagging at me was that he had a terrible time trying to gain weight. And occasionally would lose a few pounds. Then He got his first Fecal cal test in August (about 5 months after he was declared in remission) and it was 586. Normal is 50 or lower. So clearly there was some inflammation. It took another 6 months (no changes to meds or lifestyle) for his fecal cal to reach 47. I don't know if it just took 6mp a year an a half to get him to that point, if he just need to heal, or if he just had some ups and downs but we got there. There were times I thought about asking to switch meds but the GI wanted us to stay the course.

I think it can be a hard call on when to give up on a drug. I can just give you our experience that it did take time but 6mp has been working for us.

I really hope your DS turns the corner soon and is feeling good. Please let us know how he is doing. (((hugs))))