Update and questions please

[farmerswifey]

An update on my son, he has been doing well, taking 6mp with no side effects I can see, had an iron infusion last week as his iron is crazily low.

His bloods came back showing the levels in the 6mp were not right - tg is low and 6mmp is high ( I am thinking these are components of the 6mp that have to be at the right levels)????????

The dr has recommended lowing this dose, and starting on Allipurinol as well which should correct the levels? Has anyone had experience with this?

Do the blood tests check for liver and bone marrow changes from the 6mp, I did read these can be affected from the drug?

And my last question:ybiggrin: my son is relatively healthy, happy and energetic, because he doesn't have alot of symptoms, I really hate the thought of giving him these drugs.....I know that if I don't, things could flare up again, but does anyone else feel just so scared and upset thinking about these drugs we are giving our children? And what effects they will have when they are older?

Thank you for reading x

 

[Clash]

I'm going to tag MyLittlePenguin as I think her DS was on 6MP and added allipurinol. I know there are several others.

I know the meds scare me too at times, oddly enough when they are working I don't think about them much it is when they aren't that I start worrying about the side effects...I guess it is just that risk/benefit ratio.

Hope the med adjustment works things out for your son.

 

[Mehita]

I think about these drugs and their effects all the time and worry myself sick, especially when my son is feeling well and not having many symptoms. Why introduce a med that could have bad side effects? But then, in the midst of a flare, in retrospect, I wish we'd been more proactive. All we can do is educate ourselves, find a great doctor, and hope for better, safer meds in the future.

We haven't done 6MP yet, but that's the next step for us... I just haven't called the doctor to start it yet because up until today my son has been doing so well. I think it's time...

 

[farmerswifey]

Thanks guys, our doctor is excellent and works from the Royal Childrens Hospital dealing with kids with these issues all the time, I trust what he is saying, but as a mother I always think "does he really need this drug", he is doing well, but I think about what's going on inside of him that I can't control x

 

[CarolinAlaska]

sorry, we're about 6 months behind you. Doing the EEN now, but thinking about the 6 MP for the future. I hope you can figure out how to make it work right. I'm glad we have docs that got this stuff figured out.

 

[Sascot]

Not really sure about whether they add Allupurinol here, we are only on week 2 so haven't crossed that bridge yet. I have heard quite a few kids taking both, so it seems to be normal if 6mp levels not right.

 

[Ands]

We're 8 weeks into 6mp and although the thought of it does scare me the benefits are already fantastic for us, so we also try to push the negatives aside. Blood tests have been a little irratic but last lot have settled down, thankfully. As long as all the monitoring is done you should be fine and they can adjust as needed.

At the moment 6mp is giving me my boy back, long may it continue.....:rosette1:

Ands xxx

 

[Tesscorm]

No experience with 6MP but have heard that adding Allipurinol is quite common to control the impact of 6MP on the liver.

And, yes, also with you re the medications. My son will be starting remicade soon and, last night, was one of those sleepless nights with thoughts, worries, etc. just taking over! I think it's much tougher when they are doing well, it's so much easier to question the necessity... I think we have to go on faith that it is the meds that will keep them well for a long time. :ghug:

 

[Jmrogers4]

My son was on Imuran and allipurinol, Imuran is the same class drug as 6mp. We saw a drastic difference once the allipurinol was added. We just were not getting to the theraputic levels on Imuran alone and kept upping the dosage and were worried about liver toxicity. It is my understanding that allipurinol makes the 6mp more potent and easier to process/absorb so it is doing its job and not just storing in the liver. They will most likely reduce 6mp down to the smallest dose and adjust from there if needed. Jack was on 150mg/day of Imuran before allipurinol and then went to 50mg/day Imuran and 100mg/day of allipurinol and the liver levels dropped way down.