Chest infection

[Louloulou40]

My Dad has Vasculitis and Stage 5 kidney disease he has been on azathioprine for a number of years which has held his Vasculitis under control. He’s currently in hospital with a chest infection, They stopped his Azathioprine while he was on antibiotics which has now cleared up but his infection markers are rising. The Dr is starting him back on Azathioprine in the morning and I wondered if anyone knew how quickly it would start to kick in? As they think it’s not having it has given him a flare up? He’s desperate to come home but the Drs are dragging their feet.

[AmyS1]

Just be aware Dr's have huge pressures on hospital beds. They would not be keeping your Dad in for longer than he needs.

[Louloulou40 in reply to AmyS1]

Oh I understand very well how under pressure they are, I’ve been going in everyday for over a week and seen first hand how busy it is, I was just wondering how long it takes once the Azathioprine is restarted to see the effects?

[Investigator1 in reply to Louloulou40]

Hi Louloulou40, I can only go on what I have experienced and what the Specialist told me and that was although it takes up to 12 weeks to feel the benefits it starts working (undetected) within a few days. I think the thing to remember is Azathioprine is mostly a maintenance therapy so it depends how high his markers are. This is only a personal experience and we are all different. I was put onto Azathioprine after Cyclophosphamide and the dosage wasn’t high enough (100mg) and after about 3 months or so it’s started creeping up from a low of 40 (ANCA Marker) to 52,57,62, 65 the dose was increased to 150mg but only slowed things so they put me onto Rituximab my marker is now 9.

[Louloulou40 in reply to Investigator1]

Thank you so much for your reply it really helps to feel supported and listening to other peoples experiences helps too x

[Canuckanca in reply to Investigator1]

Good afternoon Investigator1, I have been diagnosed in January this year with ANCA vasculitis Kidneys) . I’m a type 1 diabetic but up to that point with excellent kidney function, a GFR of 103 in May 2021. By December 2021 it was GFR 40 (discovered in a routine blood test for another issue). Got down to 11 in January 2022 but with prednisone and cyclophosphamide it was back up to 40ish by June 2022. My Cyclophosphamide treatment ended at the end of June and now I’m on Imuran (75 mg twice a day. 150 mg total daily) since July 1 2022. As of today I’m up to GFR 44 (really hoping to get over 60) but I’ve really noticed the past week or 2 lots of hair loss. I did notice the hair loss starting in the last week of my cyclophosphamide treatment but it has now really picked up. I know it’s a side effect of of both medications. Did you experience hair loss? If so., was it a temporary side effect for you? I really don’t want to stop the Imuran if it’s going to get my GFR over 60 but I also don’t want to be bald! Right now the Imuran is an 18 month course of treatment (I’m only 3 weeks in) with only a 10% chance the vasculitis will return at the end of it. At this point my vanity comes second to my kidney function. I’ll put up with the hair loss if it works but I’m hoping others like yourself can give me some insight what I might be in for, based on your experience. Thank you

[Main1234]

So sorry to hear about your dad especially as he had been doing so well before his infection. My understanding is that AZA can stay in the system for a few weeks, is used for maintenance and often stopped when there is an infection and then restarted. Is he still under his usual consultants?

During a flare/relapse my OH restated prednisone and changed his maintenance medication. Also received Rituximab.

It may be an idea to give the helpline a ring as they are extremely knowledgeable.

Hope he recovers very soon.

[Louloulou40 in reply to Main1234]

Thank you so much for your reply, it helps to just feel supported xx

[Churg]

As it takes 12 weeks for azathioprine to take effect, the reverse is true and ,if he was on a weeks course of antibiotics, when he restarts the azathioprine he will need a week to regain that level of immunity. Having relapsed and temporarily become a bit worse he will perhaps need some additional treatment , until he regains remission again, which he hopefully will do. Ask the doctors about this if his markers continue to rise.

[Louloulou40 in reply to Churg]

Thank you so much for your reply, The Doctors have spoken to his Renal Dr and immunology who have both said much the same as you and have decided to send him home x

[Churg in reply to Louloulou40]

I am so pleased and wish him all the best.

[Louloulou40 in reply to Churg]

I surely will thank you again 🥰

[Investigator1]

No problem at all Louloulou40 I learnt something from the people on this site which has helped me so much and that is “markers fluctuate all the time, it’s how you feel that’s the best gauge, it’s easier to get on with your life that way. Give him all the best from me and Yknow where we are. Nick