Allergic to mercaptorpurine - What are my options?

[Terry]

Hi everyone, I have had Crohns disease for 27 years. I had a nasty reaction to mercaptorpurine back in 2012, after successfully taking a 50 mg daily dose for 3 years. At the time it wasn't holding the crohns very well, and my GI tried a few other drugs, all with no success, so he decided to double the dose of mp6 which he had me do over a 3 week period. Anyway I ended up in hospital and had every test under the sun, and after 18 days they finally realised it was a rare reaction to the drug. I now cannot take it ever again or anything from the same family of drugs. I had surgery in 2014 and had 26cm of small bowel removed and have recently had a follow up colonoscopy, my GI came out and saw me straight after and told me that the Crohns is back with a vengeance and that we would have to have a discussion about me going back on some medication as the only thing I'm on is Questran for malabsorbtion and Imodium. I'm wondering if anyone else has had this problem and if so what medications did they go on, and if they worked. :sign0085:

 

[FrozenGirl]

Not allergic to Imuran but I am very sensitive to it and I had to go off because my white blood cell count was too low even on 1/4 of he dose I was suppose to be on.

Have you tried methotrexate? It is a totally separate drug family. That's what I'm currently on.

 

[my little penguin]

Same for here Ds 6-mp went to his liver
So he tried mtx
Later remicade which worked for a bit
And now is on humira plus mtx
Do you meet the criteria for biologics?

 

[Terry]

Thanks for your response FrozenGirl, I also don't tolerate Imuran very well. I will speak to my GI about Methotrexate and see what he says. xx Theresa.

 

[Terry]

Thanks for your response My little penguin. I've been thinking that Biologics might be my next step, I don't know if I meet the criteria for them, how do you get tested for that? I believe because of the Allergies to mp6 and the fact that surgery hasn't really worked for me I should meet the criteria. xx Theresa.

 

[Catherine]

Terry, here's the link to the Medicare guidelines.

http://www.humanservices.gov.au/hea...mplex-authority-required-drugs/crohns-disease

Paging DustyKat as she has a really good understanding of the guidelines.

 

[DustyKat]

Sorry Terry, I haven’t been around for a good while. How did you get on with medications?

Dusty.

 

[Terry]

Hi Dustykat, thanks for your response. I have been on Budenofalk for the past 6 weeks, and started on Methotrexate a week ago, I have to take this for 3 months to satisfy medicare and meet their criteria, to then go onto the biologics, I have responded really well to the steroids and things have settled down quite considerably, so I'm hoping I won't have to go that next step, I will just have to wait and see what happens as I'm tapering down. Thanks again. Terry.

 

[DustyKat]

Good to hear that you are doing better with the current meds Terry.

I hope that when you start to taper symptoms don’t start creeping back in, Good Luck!

TBH I think that you could have qualified to go straight to biologics given your past surgery and relapse on whilst taking Thiopurines. My son had no issue qualifying under the same conditions. But all that said I well understand your desire not to have to step up and your satisfaction with the current regimen. Again, I so hope it works for you and an escalation is not required.

Best wishes,
Dusty.