I am new here but feel I could do with support 🤗

[NannieB8]

I have been taking Hydroxychloroquine for some time .

January I began Salogen.

This month I began taking Azathioprine and by next week will be on 100.

Has anyone else been knocked for six by this medication please?

🐝

[Hidden]

Yes I started on it 2 weeks, ago managed 5 days then had a massive reaction which I am still suffering from. The hospital told me to stop taking it. I am still suffering horrendous stomach pain and and nausea. Contact your GP or consultant.

[NannieB8 in reply to Hidden]

Hi 'evans'

Thank you for your reply.

Sorry to hear you had such a bad reaction, hope it settles soon.

I will ring the rheumatology team.

🐝

[whisperit]

Hello NannieB8

Sorry to hear that you are struggling. I guess it is to be expected that your body will rebel against taking on a bunch of new meds. Sometimes this is just intolerable, but sometimes there are ways of coping that make it a lot easier, of course.

As @evans say, this is obviously something to take to your doctor, but in the menatime, perhaps we can help.

Could you say a bit more about what problems you are having? Do you think it is one of the meds in particular, or can't you tell? What have you tried so far to ameliorate the bad effects?

Hope you have a good day.

[NannieB8 in reply to whisperit]

Hi 'whisperit'

Thank you for your reply.

Firstly the Salagen (pilocarpine) for the Sjogrens causes chills and flue like symptoms and affects taste and appetite.

I have persevered since January and finally it is working, the glands in my face and neck have reduced greatly. This has released all the trapped infection 😬

Started the Azathioprine almost four weeks ago.

The Azathioprine started 50mg for two weeks followed by blood tests.

Been on 75mg for nearly two weeks, due to up dose Wednesday to 100mg with a blood test.

Each time the dose was raised it took longer to stabilise .

I have felt more flue like with aches, chills and bad head.

I feel as if it has highlighted all my alilments at different times and degrees but never greater than the worst that is normal for me.

Along with feeling extremely lethargic and the mental confusion being so bad I am not driving , although I don't feel up to going anywhere.

I have SLE, Rheumatoid Arthritis, Sjorgrens and asthma.

I eat healthy, take vitamins, don't smoke or drink (only water🙃).

If possible I use natural things to help. Such as the thrush I developed in my mouth, it is under control now.

Hope this is not too much information but has given an overview of how I feel with a view to any advice or help you can give.

Thanks again 🐝

[soootired]

I started azathioprine in December at 50mg and this increased to 100mg in February. I mainly suffered with nausea and occasional diarrhoea with a general "hangover" feeling of being washed out with a mild headache most of the time.

This improved with time and I'm pleased my rheumy waited before increasing the dose because I stopped the majority of side effects before increasing and them starting again.

It took about 6 weeks for side effects to improve gradually to the 50mg then I went up to 100mg on 15th Feb. They came back big time but I began feeling fewer side effects a week ago , so I reckon 3ish weeks for me for my body to tolerate them that time.

Try to hang in there. Look out for the more serious side effects that can happen but remember these are rare.

If yours are similar to what I describe above then they should settle in a while. Maybe ask about waiting to increase though? I'm glad my side effects had improved before going up to 100mg as it gave me hope that the same would happen again and it did in half the time.

I think although subtle, it's having a positive effect on me now, 3 months on. My rheumy is happy and thinks that any improvement isn't down to the higher dose either as it takes up to 12 weeks to take effect so I might improve more!

I hope you feel improved soon. 😊

[NannieB8 in reply to soootired]

Hi 'soootired'

Thank you for your very helpful reply.

Like you my side effects are not allergic but very difficult to deal with.

Knowing that others have felt similar puts my mind at rest but also this information has enabled my husband to help me and in turn cope himself.

Hope you continue to improve.

🐝

[Paul_Howard Partner LUPUS UK]

Hi NannieB8 ,

Welcome to the community forum. I hope that you find it a useful source of information and support. If you would like to chat with more people who have lupus, you may be interested in going along to one of our support group meetings. You can find your nearest group at lupusuk.org.uk/regional-gro...

We also have trained volunteer telephone contacts around the UK if you ever want to chat to somebody. If you would like any numbers to call, please just let me know what area you live in and I can send you some in a private message.