Azathioprine take 2 levels dropping again

[Lewiss mum]

hi guys
how r u all . well lewis has had a good couple of weeks but his symptoms seem to be creeping back again . hes had tummy ache for two ays on and of .i just dont no what happens differntly for his pain to come back is baffles me . his blood work came back as hes had another bash at the azathioprine as the docs think it was due to an infection thats why hlis levels dropped so much . but his neautrophils have dropped to 1.4 his nurse said there going in the wrong direction again . so he.ll have his bloods done again this friday . lewis has also been asked to take part in a research sstudy for thiopruine induced mylosuppresion they will take an ampule of blood with his nxt bloods friday and they are going to look in to why some people react to the thioprine and see if they can predetermine if someone will have problems in the future by finding a link in peoples dna or genetics so people wont have to risk taking these meds and can start on others it wont help lewis now but it may help others in rhe future
hopefully his neautrophils will rise again of not i think it will be on the the nxt med . i do worry about swopping and changing did anyone else have to juggle these medsx

 

[Sascot]

Sorry to hear Lewis isn't dealing well with the Aza, unfortunately Andrew came off after 6 weeks since his body couldnt' cope with it.

 

[Lewiss mum]

What were andrew side effects . Lewis has been doing well for two weeks not sure it it caushe had his infliximab two weeks ago. I just hope he levels rise cause I don't want to keep swooping and changing Meds there strong Meds and I worry what effects they.ll have with usinglots of different ones , no he needs them to continue with moving closer to remission so hard to think if your doing the right thing for them isnt it . How's Andrew doing .z
Xx ps do u have snow we have a slight dusting of the white stuf.x

 

[Jmrogers4]

Sorry Lewis is feeling poorly, I hope it was just a fluke and they are on the rise. It took us a while to get to theraputic levels with the aza but he was taking that along not along with infliximab (remicade) so not sure what levels they are looking at along with that

 

[Johnnysmom]

Johnny's continued to go down for 3 months after they adjusted his meds. The dr. said it was completely normal and that they just take a while to correct. By the 4th month they went completely back up to normal range.

 

[Sascot]

Andrew is doing well so still not happy to give the 6mp but going to be trying it. We got loads of snow this morning then it was melted by afternoon! Poor kids never get to sledge.
Andrew never had any side effects from the medication. It was only his blood tests that showed his liver wasn't coping.

 

[xSophiexx]

Hiya on Aza my neutrophiles went right down and i got pancytopenia (all other blood levels went very very low). Symptoms were vomiting, extreme aches and fatigue.
Was taken off Aza straight away and told to never take any form of Thioprine again. rare reaction and TPMT test suggested this would not happen so please dont think im trying to scare monger you! As long as your little one is monitored (which im sure he is) he should be fine and fyi a week off of Aza and i was back to normal xx

 

[Lewiss mum]

thanks guys juat ope his bloods rise cause the aza works for him . well lets see how the nxt few weekzs goes. ive got anova drama now with my daughter shes having probs bad tummy . sore throat and its been on and of for months her mchc levels are up she just had bloods taken again today shes been ref.d to an ear nose and throat and a pediatrition to see if her tummy amd runny bum is connected or if they think they are two differnet issues i just hope that its not connected and the sore throat is causing her tummy aches with a virus that is passing through . she also has severe psoriosis . god my like is never simple . im wo dering if his is he start of an ibd but im looking at the bigger picture and hope its not its been going on since last agust now . i will ipdate when i get her bloods back this week . x

 

[CarolinAlaska]

I totally understand your concerns. Praying right now that it is something less severe and that there is an easy fix for her. Let us know how the testing goes.

:Hugs:
Carol

 

[Lewiss mum]

thank you got a phone call from the childrens hosp last nitr it has been ref.d up there i no they.ll be extra caucious because of lewis and they.ll look into things quicker than thry dis him which is probably a good thing then we can find out either way . hope your all o.k and your kiddies are well .xx