Just started Azathioprine and struggling!

[MissFG]

I started on a low dose 25mg a week and a half ago and upped to 50mg last Thursday for 3 weeks then a further increase until I hit 2mg per 2kg in weight with fortnightly blood tests.

I didn’t tolerate mycophenolate very well so trying Azathioprine. I’ve been told that I am very sensitive to drugs and changes in dosage etc.

I’m just feeling very lethargic, increased muscle and joint pain, fatigued but more than anything I feel very emotional and not in control like I’m on drugs that are making me feel tearful and depressed on a real downer.

There doesn’t seem to be any side effects listed for emotional / mental well-being and I just wondered if anyone experienced this when they first started on these drugs.

I’m feeling so very low which is unlike me, and although I struggling my with diagnosis I feel so very sad, alone and hopeless about my future and health I just want to cry. I have no coping mechanisms (more than usual) this past few days, higher anxiety and although never cry have struggled stopping since Friday. Just weird as I’m never like this. I just feel no one understands and they think I’m losing the plot! 😢

[juneybells]

Hi I've been on Azathioprine for a few years now but do remember when I was first prescribed i was a message in a lot of pain very very sleepy and just down right miserable! It took about 3 weeks to feel anything like normal. Fine now please try and hang in there but call your GP or practice nurse to talk through how your feeling. Hope you feel better soon

June

[Xraytek in reply to juneybells]

I was told that it would take about 3 months before I may notice any changes. I'm only about to start month 2 so I'm still miserable. Good luck to you, hang in their.

[Melirm]

Hi MissFG, I was transferred from mycrophenolate to azathioprine and suffered awfully. It made me feel flu like, weak, sickly, muzzy headed and just down right unwell. When I spoke to the nurse about it they informed me that about 40% of people who try azathioprine don't get on with it. I decided I couldn't carry on and we agreed for me to stop. I went back to mycrophenolate and have felt so much better. If your feeling unwell my advice is to let your Dr or Nurse know asap. They may want to do some blood tests as well to make sure things are ok. Don't just suffer with it. There are always other things to try. Hope you feel better soon.

[MissFG in reply to Melirm]

Thank you! I’m back for my fortnightly blood test Thursday.

I couldn’t tolerate mycophenolate I gave it 6 weeks but just had to come off. I’ve only been on Azathioprine one and a half weeks and still only on a low dose.

I know I’ve got to stick with it. But I’m so down of feelings sick ive been ill for nearly two years and it’s taking its toll. Let alone taking drugs that make feel even worse. But if I don’t find one that I can tolerate or I improve on my future is very bleak as in addition to hashimotos and lupus I have a rare muscle disease. So don’t want to decline quickly into a wheelchair which will be what will happen without the right treatment

[soootired]

I have been taking aza for a year now. I've recently (10 days ago) had my dose increased to 150mg and all side effects have come back. - nausea, tummy upset, headaches etc. Point is, they'd all disappeared prior to my increase. It takes a few weeks for your body to adjust but it does. Each time I've increased it got used to it a little quicker. Hang in there... That's what I'm doing anyway!!!!

[MissFG in reply to soootired]

Thank you think I’m letting it overwhelm me and I’ve been sick for two years and getting worse. Just think it’s all taking its toll on me and taking drugs that are supposed to help but make me worse at first is hard to get your head round. I’m sticking with it as I have no option but going to get positive and focused on helping myself!

Had first physio today feel awful but know it’ll help so I need to think the same with my meds

[Coffeetime]

Hi I've been using azathioprine for about 3 years and my dosage is 225mg now. I had a hard time getting use to it ( just over a month) before noticing a change in how I felt. I would suggest that you talk to your doctor or consultant about how you feel but remember this is a new drug for your body to get use too it won't happen overnight

All the best and I hope that you feel an improvement soon.

[MissFG in reply to Coffeetime]

Thank you on my second drug to trial so need to give it chance I’m feeling more positive with everyone’s kind comments!