Azathiaprine success stories

[Jessie_2014]

Hi all

I am due to start azathiaprine (assuming my bloods come back okay). I was originally encouraged by this. Every day is a battle for me and I often feel like I am not as well supported as I could be so I was of the attitude that this could be the drug that really helps and that it is absolutely worthy a try. However when I've been reading about it am really concerned. Mostly what I've seen is negative and the thing that concerns me most is the side effect of fatigue. Fatigue is absolutely my worst symptom and it takes over every aspect of my life. The thought that this could become even worse is a real blow.

Does anyone have any positive stories they could share? I want to be hopeful but feel a little scared and overwhelmed. I'm only in my 20s and have suffered for 10 years. I need some hope that medications may work for me!

Thank you for listening

[Bee1london]

Hi, I was in the same dilemma about aza so understand how you feel about it. I didn't have any increase in fatigue when taking it. In fact my fatigue improved because it reduced a lot of my other symptoms. It was like an absolute wonder drug for five months for me. Then my docs increased the dose and it started to make me vomit everytime I took it so had to stop. Hope you experience an improvement in symptoms too if you decide to try it.x

[Jessie_2014 in reply to Bee1london]

Hi Bee1

Thanks so much for replying. That is really good to know thank you for sharing . It's such a shame you weren't able to continue. I hope you have found somehing else which is beneficial! X

[Melba1]

Hi Jessie, I felt the same as you when my rheumy said I had to start immunosuppressants but I felt so rubbish all the time anyway (especially the fatigue) that I decided it was worth it. I react badly to lots of drugs so had to try a few (including AZA which most people don’t have a bad reaction to but I couldn’t take it) but now I’m on methotrexate and it’s made such a massive difference to my life. After about 7 weeks the fatigue started to lift and now I feel almost fine which I just couldn’t imagine. I am thankful and grateful about 10 times a day that I can have a normal life again and I think it’s entirely the methotrexate.

I’d definitely try it. I’m about 20 years older than you and didn’t get lupus until my 30s so can’t imagine how horrible it must be at your age to watch everyone else having the energy to do things. Hopefully AZA will make a massive difference to you and if you get side effects which you decide are worse than the disease then my advice would be to keep trying different immunosuppressants as we all react differently to different ones and the right one for your body may put you into remission and allow you to have a normal life.

Fingers crossed it works well

X

[Treetop33]

I can't stand the fatigue either and was about to be put on this drug by my rheumy. Then I started on LDN and it has really helped (with two things, fatigue and sleep). It's available on private prescription. Saved my sanity it has.