Polymyositis and azathioprine

[Fleetwood49]

Hi I was diagnosed with Jo-1 Syndrome and Polymyositis in June 2018.

I have been tapering Prednisone and I am down to 10mg a day. I have had Azathioprine added recently up to 125mgs per day now but it is not agreeing with me, vomiting and diarrhoea on and off. Due to see my consultant again in January 2019. Does anyone know if the side affects settle down and how long after starting the azathioprine? How long does it take before I notice the azathioprine working?

Can anyone help please.

Fleetwood

[whisperit]

Hello Fleetwood

I have had UCTD for a few years, and developed polymyositis in the spring of this year. My steroids were increased and changed from prednisolone to methyl prednisolone at 30mg a day. After a few weeks, I was also started on azathioprine.

I coped with the MP fine, and the first few weeks on aza were also no trouble. But after a few days on 125mg aza, I woke with a high temperature and rigors. The on-call doctor had me taken to hospital immediately in case I had sepsis. This did not appear to be the case, and after a few days off the aza, I was sent home. I resumed on 50mg aza, but after just 2 days, started vomiting, and was again admitted. After another couple of days in hospital, I restarted with 25mg aza. I was immediately violently ill again. We gave up on the aza at this point!

So it does seem that some people don't get used to it.However, I do know of some people ono the LupusUK site who say that they have had no trouble with long term use, so it's probably quite an individual thing.

My PM has subsided with just the MP - my CK returned to normal after about 3 months, and I'm now tapering down to a more sustainable steroid dose.

Hope things work out for you; feeling nausea for long periods of time is utterly miserable x

[Fleetwood49 in reply to whisperit]

Hi Whisperit

Thank you for your reply. Just a matter of wait and see if the symptoms settle down.

Hope your feeling better. Take care.

Fleetwood49

[Jo-Goode Administrator]

I would contact your consultant's secretary or specialist nurse and explain your situation, as they may decide to change treatment before January.

I was originally on Aza for almost 4 years with no issue, but when placed back on the medication 15 years later had to stop after a week, as feeling dreadful, instant mouth ulcers and bloods all over the place.

[Fleetwood49 in reply to Jo-Goode]

Hi Jo

Thank you for your reply. I had bloods taken today so I will wait on the results in the next fews days and then contact my consultants secretary.

Take care.

Fleetwood49