My daughter recently diagnosed with Lupus was on 3 weeks of steroids along side hydroxychloroquine. Whilst on steroids started to feel better but symptoms returned in weeks are finishing course. Reviewed yesterday and confirmed Lupus back and gave another 3 weeks steroids and added azathioprine as long term.
She is suffering most with nausea and no really eating, smell and seeing food makes it worse which is problematic at work. Reading up could be lupus effecting intestines - but also side effects from the meds - but is there anything that docs can do to reduce the nausea and allow her to start eating again to achieve a balanced health diet, and allow work to not be an issue?
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smeackles
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Did you mention it at the review yesterday? If not it is worth contacting the Rheumatology department that your daughter goes to - perhaps speak to the specialist nurse. They would be the best to advise her about the nausea as it is in everyones best interest that she starts to feel she can eat. I do hope you reach out to them and that the symptoms start to subside. Do let us know how you get on.
Thank you so much for your reply. My daughter is over 18 now and went to Wednesdays appointment on own (I usually try and go). She did talk to them about it along with the other symptoms. Since she was especially bad that afternoon and clearly still impacting her 24/7 I have suggested her to contact Rheumatology again and not wait for the next phone call they said they would arrange with a specialist nurse. I fear that since it is still doing damage, and has not been brought under control since it kicked off, it is attacking her intestines which does give nausea and loss of appetite as signs. She gets woken in night feeling sick - having not eaten much at all, so this stops her from eating healthy balanced diet and keeping strength up working 10 hour days. We are new to this as only started in March and luckily diagnosed in June. But finding it not easy to feel she is being monitored well as no current idea when she will hear from nurse or be seen again. I have stressed to her she has to fight her own corner sadly and let them know this is a big problem. Just hope that after the steroids finish (which last time worked great) the hydroxychloroquine at least starts to show its beginning to help. Thank you.
I would reassure your daughter that, in my experience, the hospital would much rather know that there are significant issues and support you in dealing with them earlier rather than later. The emptier our tummies our when taking these meds then the more likely we will feel side effects. I know that I always take Hydroxycholorquine with or straight after a meal. You are right that we have to fight our own corner as some services are quite overwhelmed and they are dependent on us raising an issue and not letting it rumble on. Alternatively, suggest that you speak to your GP - they often have a direct line to Rheumatology advice line and may be able to help you, alternatively they might be able to offer something to protect the tummy. Good luck.
Thanks Rosie - yes certainly highlighting to her they would prefer to know before it goes on too long. She always manages a little food with the tablets, but know she is struggling to eat around that. Have to say her anxiety and being overwhelmed is off the charts, but I understand that is very much a symptom aswell. Long battle ahead but we will get there.
You're welcome. When she is ready she might find it useful to join our merry little group here. There are others around her age. We are all at very different stages in learning to live with Lupus, some are recently diagnosed - others have lived with Lupus for decades. It really doesn't matter because one thing we all have in common is compassion, experience, knowledge, care and a deep understanding of what each other is going through and I would hope that she would find it very supportive.
Absolutely - I have paid for a joint membership for us to Lupus.org and jumped on here from there myself on seeing the forum. Even though I am not the one going through this - I am feeling supported already.
She thankfully has a break from work coming up and will be back home soon for a week - going to talk through all this with her then.
Great, I think supporting family members is so important. I often read posts to my husband so that we gain information / support together. It really does help. x
Lupus UK has a dedicated young people's worker and they have an info pack. They are very supportive too. The number for head office is 01708 731251. I do believe there's a young person support group too that your daughter might be interested in. 💜🌈🦋Xx
I've just had another thought about your daughter and rereading your post a couple of things have come to my mind about her tummy issues. When she's prescribed steroids is she also given a medication to protect her tummy? I take prednisolone and Omeprazole alongside it which is a stomach protector.The other thing is what brand of hydroxy is she taken? Some of these brands can upset the digestive system such as Bristol or Ipca. If this is the case your daughter could ask to be switched to Zentiva brand as that is gentler on the stomach. She would have to ask to get Zentiva brand written on her prescription to ensure that she gets that brand every time. Xx
Thank you for this - very relevant and god to know. I am not sure what brand steroid she is on right now, but will ask and let her know all of this.
To be fair when on the short courses of steroids she is able to eat better, it seems when she finishes and is left on Hydroxychloroquine is when it got worse, and having just started last week alongside 3 weeks of steroids Azathioprine we are wondering if in 2 weeks when steroids are done it will get as bad as it has again.
But something for anti sickness or to protect the stomach makes most sense. When she was younger (pre diagnosis) she was never really ill, but only had a stomach issues every so often that things like omeprazole helped. So perhaps her stomach could still be delicate to this?
Thank you for your reply - every bit of knowledge helps.
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