Azathioprine/Lupus/Sjogren's

[Hollydebs]

Had my 6 month check today at Rheumatology & my consultant thinks it's time for me to start Azathioprine. He has requested my usual blood tests and an additional test that will show if my body will take Azathioprine as if something on the test comes back as too low it wouldn't be suitable, all went over my head to be honest.

I have Lupus & about 6 months ago I got diagnosed with an overlap disease of Sjogren's. I am struggling with my fatigue at the moment really drowsy & lethargic & the aches & pains are escalating. Only work part time luckily but on the days I do work due to the tiredness I am having to concentrate so much it's causing brain fog & headaches, hence the consultant re: Azathioprine. Bit confused as presumed the next stage of drugs would be if there was organ involvement but cross fingers that's not an issue at present.

Would appreciate anyone's input here. Admit to being nervous re Azathioprine.

[littleeffie]

Reading the side effects is enough to send most running away including the increase of cancer and possible allergic reactions BUT I started them,despite having already been through cancer and having awful reactions to many drugs I am so glad I started taking these.

I have been taking them for a few years now and they have made such a difference .

I make sure I get the Imuran brand as the any old brand Azathioprene cause me problems .

I also take them after food and strongly suggest you to do so

For the first 2 weeks I suffered awful headaches and nausea but persevered thankfully and the yuk side effects stopped and only reoccurred for a week to 10 days at each dosage increase.

It takes awhile as with most lupus meds to show its good side and improvement in your day to day but they have given me back some quality of life and the regular blood tests are a price worth paying to have this improvement.

Everyone reacts differently to meds and has their own version of lupus so I can't say how you will get but the above is my experience of Imuran (Azathioprene)

[Hollydebs in reply to littleeffie]

Is Imuran the newer version or like a generic brand?

Thanks for your comments always seems so daunting.

[littleeffie in reply to Hollydebs]

Imuran is a specific brand of Azathioprene .

No probs .

Daunting describes all new meds rather well ☺

[misty14]

Hi hollydebs

Sorry to read you've been struggling with your health, glad your Consultant wants to help more by putting you on Azathioprine. I have been on that drug twice over the years and found it very helpful. You'll start with fortnightly bloods then if ok monthly thereafter. It can affect your blood counts but regular bloods will pick this up quickly and we all react in different ways. This was the reason I had to stop it but I had taken it for several years before it became a problem. It's a case of weighing up risk versus benefit and it sounds like you need the benefit more!. Hope it goes well for you. Keep us posted X

[Hollydebs in reply to misty14]

Thank you for taking the time to reply.

I'm so grateful to get others opinions especially, if like you, have been on the meds previously.

It does worry me but if it will help I know I have to try it or live a half life which isn't living at all.

Suppose all rests on the blood test results to see if the drug is suitable 😥

Xx

[misty14 in reply to Hollydebs]

Hi hollydebs

Good luck for your bloods to see if Aza is suitable. If it's not there are other immunosuppressives you could try, methotrexate or Mycophenolate which is well tolerated and effective!. It is a big step in treatment going onto these drugs but they're well monitored so any problems are picked up quickly. Keep us posted. X