Help at hand

[CarolMcl]

Ive recently been diagnosed with lupus and so glad i found this site yesterday. Been back and forward to the GP for three years with a growing list of symptoms but got no where until i had a bad glare up in January. At last consultant visit I was asked to consider starting azathioprine to suppress my immune system but I'm really unsure about this. I've got until January when I'll receive the results of my TPMT levels to decide, would really appreciate any helpful advice. Thanks Carol

[whisperit]

Hello Carol,

I guess that at least you are getting some clarity about what may be going on? What are your reservations about azathioprine? Have your medics offered a clear rationale for their proposed plan? x

[CarolMcl in reply to whisperit]

Hi

At last consultation I was informed that my present medication (hydroxychloroquine) has basically done all it can and it was time to consider other medication. He did mention other drugs but since i now have lung damage, these could be detrimental to me, hence the Azathioprine. I think it's the thought of my immunity being suppressed when I seem to be more prone to illness is what's worrying me the most.

[whisperit in reply to CarolMcl]

Thanks. So I guess you feel that your medics haven't really heard your concerns? Or explored other options with you? It's hard when one is faced with big decisions like this, have so many questions and only a rushed consultation to cover it all. I don't have any experience of aza, but I'm sure someone will turn up shortly who does! x

[CarolMcl]

No, just handed a print out of the drug, bloods taken and told to think it over. I'm actually a psychiatric nurse but in all my years have never came across lupus. Now to be told I have it and to be in a job where you're open to so much, yeah I'm extremely apprehensive. Thanks for listening to me whisperit 😋

[Bakbre]

Hi there Carol

I had exactly the same experience when I was told that Hydroxychloroquin had done all it could and I was put on Azathioprin. Unfortunately it did not work for me and I was then put on Lefludomide which also didn't work. I am now being given Rituximab which - touch wood - seems to be working.

Unfortunately as this awful disease means that your immune system is attacking you, most if not all of the treatments for it work on suppressing the immune system. You just have to take more care of yourself. I know that it must be tricky in your job.

Ask your Consultant about the side effects and the other alternatives and don't leave the appointment without being told. We all know that the consultant is very busy but this is your health we are talking about and he/she should be aware how serious this is.

Good luck.

[CarolMcl]

Thanks Bakbre, appreciate your time. After being brushed off by my GP practice for 3 years I think im actually finding it hard to believe that I do have something real wrong with me. Hopefully by the time of my next appointment I'll have got my head around it and be in a better position to make decisions. Have also been diagnosed with depression which I understand can go hand in hand with lupus, so with also taking medication for that, I'm hoping for some clarity soon.

[Curly1430 in reply to CarolMcl]

Hi carol are u in uk ? X

[CarolMcl in reply to Curly1430]

Yes I am x

[Paul_Howard Partner LUPUS UK]

Hi CarolMcl ,

Welcome to the LUPUS UK community forum. I'm glad that you have found us and hope that you find this a helpful place for information and support.

If you'd like to read more about the experiences of other people who have taken azathioprine, you may wish to look at some of the past discussions about this at healthunlocked.com/search/a...

If you need more information about lupus and LUPUS UK, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

Please keep us updated with how you are getting on.

[CarolMcl]

Thanks for the advice Paul