Hi

Hi...new here.... I'm 8 years post renal transplant and have been taking tacrolimus, azathioprine and pred for most of that time.
Symptoms now are mild gi inflammation, pain in ileum area and need senna or other stimulants to get a bowel movement. Also got plenty of peripheral neuropathy (diagnosed by NCS testing) and presumably autonomic neuropathy. Symptoms ver like those associated with diabetic neuropathy though I'm definitely not diabetic (fasting gluc 5.8-6.3 area).
Recently had proper pancreatitis with Amy @1142 uk units(ie high)
Without senna/lactulose bowel movements are at best once every 4 days or so.
Aza dose is 100-125mg /d split dose with good tpmt levs and 500+ 6-tgn levels.

Aza gives me cholinergic-like itching, green urine and occasional liver spasms....but the pancreatitis was almost 4 years after starting aza.

I get mixed opinions from docs re aza... Some say take less, some say take more...all very confusing. Higher pred (on 2.5mg/d) makes me very grumpy and I've already lost a hip to avn. Tacrolimus probably causing cidp-like symptoms but dose is what it needs to be to avoid transplant rejection.

Next approach may be to reduce tacro but increase aza to increase transplant life but then my aza dose will be really high.

Question.... How much aza is too much? How can you tell for any individual?

Interested to hear opinions on this
Cheers
Keith

Hello and welcome to the forum

The first time I was on the Aza I went up to 200mg a day,the second time I got to 125mg before side effects again meant it had to be stopped. In my experience docs initially base dosage on weight but if this is not able to do the job with careful monitoring the docs will up the dose as long as it doesn't cause an issue. We did have someone post once that they had been on adosage up to 400mg which is the highest I have ever known for this med. As the Aza has caused some problems with your is there not an alternative you can be given as part of your transplant treatment? Have you received confirmation of a diagnosis for crohn's? Given the pred were you ever given a calcium supplement to take with this?

AB
xx

Thanks for the hello and the feedback AB.

No formal diagnosis of Crohns but seeing a gastroenterologist again soon to see if they can help with symptoms. Dx possibly irrelevant as my drug therapy for the transplant is always going to be a mix of tacro+aza+pred anyway.

I guess my concern is that I get green urine (ie riboflavin), cholinergic itching and liver spasms which correspond to my aza dose .. so it might be an idiosyncratic problem. My concern is possible hepatotoxicity and pancreatic issues at higher dose .. but difficult to know whether a pragmatic approach of trying higher dose to find out (which seems to be the docs preference) is ideal. All liver blood tests are within range.

My calcium runs high (2.7) but my phosphate low (0.6-0.8) so no need for calcium supplement at present. Pth is 11ish and vit-d 50ish so (hopefully) no current risk of more avn.

I guess I was wondering if other folk have had the liver spasms and burny itchiness from aza in high dose and if so what they were told ?

anyway... I guess time will tell
cheers
Keith

Please keep us updated, I can understand the concern given the current problems you are getting from the Aza. Is there definetly nothing else that could be looked at for you - Mycophenolate or Cyclosporin?

Thanks... Mmf was a disaster for me (tried it for a year prior to aza) with rapidly progressive neuropathy and epic pain.

Cicloporin is a possible ... Though switching after 8+ years of tacrolimus might take some time for my guts to settle to it... But it's not clear to me that gi issues from ciclo are lower than tacrolimus.... I suspect they are driven by CNI neurotoxicity in both cases.

Anyhow..life is good even if symptoms can be a bit testing! (To say the least!)

Thanks again

That's a shame, I will be keeping fingers crossed for you with regards to the Aza.