Azathioprine v Mycophenolate

[Hodgey58]

I have recently been diagnosed with ILD and put on steroids.I now have to make a decision as to which other form of medication to take along side or replace steroids.Has any of you lovely people out there had bad reactions to these drugs.Reading the side effects as with any drugs looks so scary.Which should I go for? 🤔🤔🤔🤔x

[Danielmystar]

I would stay on the steroids as they've been really helpful to me over the past 5 years I've only been hospitalised once find out what medication you can take along side of them x

[Hodgey58 in reply to Danielmystar]

Thank you Danielmystar, I’ve got an appointment today.So many questions to ask I’d better start writing them down.But I will request staying on steroids for as long as possible.xx

[Danielmystar in reply to Hodgey58]

Yes that's good thing too do good luck and please update us thank you x

[Hodgey58 in reply to Danielmystar]

Well I had my appointment with the specialist respiratory nurse yesterday and I have decided to go with Mycophenolate along side my steroids.I need to go on a short dose of antibiotics to start with as my immunity will be low.fingers crossed my body can tolerate all these tablets.My sleeping has been horrendous lately which doesn’t help with my anxiety through all this 😫😫😫😫

[MoosterMoo]

Hi Hodgey58, how are you getting on with the mycophenolate? I've recently just started it alongside steroids.

[Hodgey58]

hi there Mooster Moo.Hope you had a lovely Christmas.In answer to your question about Mycophenolate ,I have now been taking them for 3 weeks gradually increasing.I take them with my steroids.(now on 11 and a half mg) I have a weekly blood test and am due to see the ILD nurse mid February.Hopefully by then I will see some improvement in my breathlessness.Are you managing them ok?

[Hodgey58 in reply to Hodgey58]

Was also wondering if Mycophenolate medication is causing this insomnia.Im only getting 1-2 hours sleep and really struggling through the day.Does anyone else have this problem and does it diminish once I get used to the tablets?

[angelika224]

I've been on Cell Cept for two months, still waiting to see the results. I took it back in 2016, and 1000 mg was very effective. As for the side effects: hair loss, brain fog and tiredness so I don't know how long I will stick to this medication.