Originally Posted by northerngal

It's so strange how every doctor has such different opinions in their treatment plans. In my case I was given IVIG, plasma exchange and rituxin, the IVIG was considered first line and least dangerous. The immune suppressors (imuran, cytoxin etc) were considered the "big guns" in the opinions of all the doctors I saw.

Originally Posted by MAT52

I was two weeks into taking Azathioprine/ Imuran when the abdominal issues kicked off. I came off it while in hospital and then tried, after a two week break to restart last Wednesday. I had a strong instinct that it was the culprit for the abdominal pain even though my pancreas and liver tests showed nothing untoward. I am booked in for a Cholecystectomy (gallbladder removal by keyhole surgery) in early July.

So I ended up with such terrible vomiting and pain an hour after taking the
Imuran last week that the doctor had to come to my house and inject diamorphine and anti emetic in the bottom!

Even then my doctors didn't want to blame Imuran as my monitoring bloods had been okay and my CRP was down to 6.7 but ESR slowly continuing to rise so RA/ inflammatory process was out of control. The peripheral neuropathy and jaw pain were the worst they have ever been to date and stomach issues had eased.

All the while I felt exhausted and dizzy to the point of unable to walk downstairs let alone work or help my son with exam preps or my husband with cooking or housework.

So I agreed with some trepidation to take Imuran again the next day and within about four hours was doubled up with the original pain. No vomiting this time. All night my entire body was gripped with one sort of pain or another - only the top of my head was exempt!

Next day the stomach pain eased and I decided this was the end for me and Imuran, whatever the doctors said, so I took my prescribed cocktail of Tramadol, Paracetamol, Ranitidine and newly reintroduced Codeine and went to sleep. When I woke I felt fuzzy and the side of my face had gone numb and my entire left side was weak to the point of near paralysed. I thought I might be having a stroke so the doctor was called once more.

He agreed I should stay off Imuran and felt I might be suffering from understandable anxiety with these multiple symptoms but had me re-admitted to hospital - this time for a possible stroke so I was under a medical consultant rather than the surgeon. And this is a tiny community hospital in a remote part of Scotland so the chances of finding anyone to unravel my complex case wasn't very good.

But I hit the jackpot at last and was seen by a consultant nephrologist who really knew her stuff. She kept me in under watchful gaze for five nights having immediately recognised that this wasn't a stroke but something far more strange. My CRP was up at 160 and my ESR had risen into the 70s and yet no sign of infection or visible inflammation at all - just a moderately raised white blood cell count and platelets and amylase and blood in urine - which they felt could be a mixture my reaction to Imuran and constipation from Codeine. I was put on proper doses of laxative for this. By Monday morning the conclusion she and another locum consultant came to was that the gallbladder, Imuran, constipation etc were all issues that had distracted from the main problem - which is my autoimmunity is presently soaring, unchecked.

Sorry this is so very long but I know that some of you have followed my story and would be very grateful for your advice on what to focus on with the neurologist under these circumstances.