Week 1 on 6 mp over

[polly13]

week 1 on 6 mp over

So we are over our first week on 6 mp - and so far so good, we can start tappering the prednisone later on this week so hopefully she will calm down a bit because as the prednisone continue to build up the more hyper she gets - she is at about 7 hours sleep per night at the moment and is hyper during the day, but it is far better to see her like this than thrown down with no energy.
She has her first blood test since starting the 6 mp in the morning so fingers crossed that will ok.

 

[Dexky]

Good luck Polly. Are those her only two meds?

 

[polly13]

Only two for the minute and hopefully when the prednisone is gone she will just be on the 6 mp. Actually she still gets half a sachet of movicol every night in case she gets contipated as that would agrivate the perianal disease. She has been on movicol with nearly two years and we have reduced it back to the minimum and I guess we are nervous about stopping it completely. However, GI said we will talk about how to stop it at our next visit as he like me doesnt believe she really needs it. As it has no long term effects, I think he is humouring me by leaving her on it as I am a little paranoid about the constipation. Eventhough I dont believe she was ever really constipated. that all sounds a little daft.

We had to go with the 6 mp as she didnt respond to either flagyll or ciproxin (they are the main antibiotics - may have different names in different countries. We went from there to the prednisone, and while she has had some responses to it, he feels not enough and also doesnt want to leave her on it long term - so hence the 6 mp. The whole drug thing with Crohns is mind boggling, but the more I read the more I think it is about getting the right combination for each patient on an individual basis to induce remission and that there is an element of trial and error especially in young children.

Polly

 

[Dexky]

I only ask because it can take 6mp up to 6months to reach therapeutic levels. When my son was on it, it took 4 months. There may be a lag between her pred and the 6mp's effectiveness. Most, my son included, are also on some form of mesalamine, usually asacol or pentasa depending on symptom locations. I'm not saying your girl needs it, just something to consider.

 

[polly13]

I dont know what mesalime is - I am still only learning about the all the drugs involved. What is it? GI told us that 6 mp can take up to 6 months to work effectively and we will review in 3 how we are going, she has about 9 weeks left on the prednisone with the tapering so I hope that will be ok, it only leaves a lag of about 2 weeks before we see GI again. She is having weekly blood tests for the next six weeks and every two thereafter so I suppose I will have plenty opportunity to discuss any issues. I really wish I was more informed when I met the GI to ask all these questions. I think I will be next time - this forum really is great for getting information on treatment options.
Thank you.
Polly.

 

[dodie74]

Hi Polly, my son, Kain is on 6mp and mesalazine, the way his ibd nurses explained it was great. They told us that the 6mp targets the crohns directly as its an immunosuppresant but the mesalazine is like a soothing med i suppose. she said its as if your rubbing a cream into the area so its soothing the surface. its alot to take in, i still get all the info sheets out and read them front to back. I think it took 7 odd months for kians meds to regulate, the odd time his white cell count was bit low but was nothing to worry about they told me and by his next blood test it was fine again. is this your little ones first set of bloods tomorrow?

 

[polly13]

First set of blood tests tommorow - am actually dreading it on a number of levels, hopefully her blood count is ok - what do we do if it isnt? give it a chance to come back up - I dont know.

Also worried about the actual taking of the blood, we are not going to the specialist centre for the bloods as it is 2 hours away, we are going to our local paediatric unit, we had a choice between that and our GP, felt the GP wouldn't stick enough small children to be really proficient and picked the paeds unit, however it is only beginning of february, new docs are only on rotation since the start of January so I hope to god the person taking the blood is good as it most likely to be the SHO who does it. I know a couple of the nurses who are really good at taking blood so Im think if one of them is on duty I will ask them to do it. However, my experience is when I go in with Lucy, it is always the doctor who does anything that needs to be done. I know I have myself in a knot about nothing really and I am sure it will be ok, but it is just that we will probably have at least 9 sets of blood taken in the next 12 weeks and I just want it to be ok for her.

Thanks for the explanation re: the mesaline that makes sense I think.

 

[dodie74]

If i remember right, his 1st set of bloods at beginning were fine and they gradually put the dose up ever so slightly til they get it to the right level. We have a childrens nurse come to the house to do Kians bloods, its less stressful for him and i get the emla cream and tegaderm patches prescribed so i put that on him an hour before his blood tests so its nice n numb ready for it. i got myself into a right state the 1st time he had the bloods but they really do get used to it. Now we are 3 monthly bloods so im hoping they are fine the next time. x

 

[DustyKat]

Do you have Emla patches, or something similar over there? Great to use on kids when they are having needles or bloods taken.

Perhaps the GI has skipped the 5 ASA's (Mesalamine) due to the reduced response your daughter had to antibiotics and Prednisone. Generally the sort of response she had, or lack thereof, means a jump straight to the immunosuppressives.

Did your daughter have a TPMT test? It tests for an enzyme in the liver that helps metabolise the thiopurines....Azathioprine and 6MP.

Dusty. xxx

 

[polly13]

Ya Dusty - I have the patches thanks - they are a godsend, so I am hoping to get them on a good hour before they draw the blood so min pain there I hope.

I have been researching since my first post and I think I agree with you on the other drug, also I think it is more indicated for bowel disease as opposed to peri-anal disease which lucy has. It is gas when you read about something and you start second guessing the GI - as Ireland is a relatively small country there is only one specialist GI unit and all the kids in teh country with IBD attend this unit and from googling our GI he does seem to pretty good, he has published on Paediatric Crohns and has some internation acolades, so I think I need to trust him, but Lucy was so young getting her diagnosis and I know there aren't many her age that have been diagnosed - I suppose Im scared the treatment is a little hit and miss.


Dont know re: the TMPT test but have checked the bloods she is having tommorow and it is not on that - although all possible liver function tests are ticked so it may be called something else here.

Thanks again for all the information and support.

 

[izzi'smom]

Just wishing you luck tomorrow, both with the draw itself and for good results~!
:goodluck:

 

[DustyKat]

Dont know re: the TMPT test but have checked the bloods she is having tommorow and it is not on that - although all possible liver function tests are ticked so it may be called something else here.

It should have already been done and it takes about three weeks to get the results. Maybe ask if they ran it when you next see the GI.

Good luck with the bloods!

Dusty. xxx

 

[LilyRose]

Thanks for letting us know how you are going. I hope you are feeling OK. I think it is very hard when faced with both the diagnosis and then making decisions on treatmen.
I am sure you specialist will be great - especially as all the kids with crohns are gong there, they will have lots of experience and expertise.

Take care, and I hope you are finding this forum a good support.

LilyRose.

 

[polly13]

Well we had our third blood draw today and I must say Lucy is fantastic, she doesnt even wince, also our first two sets of blood results were good. We are tapering the prednisone at the moment also and I was slightly concerned about that as the 6 mp wouldnt have kicked in yet, but so far so good, no worsening of her symptoms, maybe even a slight improvement.
Thanks again for all the support on this forum.

 

[izzi'smom]

So glad she did well! :thumleft:

 

[Crohn's Mom]

So great to hear that she did so well and is feeling better !