Sorry for a "question" first post. I don't know anyone else who has lupus in "real life" (or, if I do, I don't know it!) and I was only diagnosed in August, so I'm very new to this.
I was referred to Rheumatology and diagnosed with SLE and APS in August, after having repeated infections and low neutrophil counts over more than a year. I also was hospitalised with a suspected small blood clot on the brain in March last year, h and had frequent migraine-type headaches ever since. I'm taking Hydroxychloroquine and daily Aspirin and also had a steroid shot in December at my last appointment (cannot remember what it was called...).
I've had a UTI all week and haven't responded particularly well to antibiotics. Today I called the GP because my urine was very foamy and bloody and I had a bad pain in my back and was feeling quite unwell. They advised me to go to hospital and I've now been admitted for IV antibiotics.
I haven't had an opportunity to ask many questions yet and I guess what I'm worrying about is...
Could it be connected to lupus?
Could it make the lupus worse?
And... how long it will take me to recover and till I can go home? My manager is eager to know if I'll be able to work Monday.....
Thank you in advance!
Written by
Alrac94
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Hi Alrac, welcome to the forum. Sorry to hear about your troubles, it can be really worrying receiving a diagnosis and navigating all the complexities. I also have SLE and APS (or at least the antibodies for this, I haven’t had a blood clot). I also have lupus nephritis which is when it goes to the kidneys, but this is very mild fortunately so the medication I’m on is to protect my organs from lupus doing any damage.It can be scary and unclear what’s happening, even now two years on my diagnosis I’m learning things. So take your time and seek out information from the lupus U.K. website/ charity, make friends on this forum, speak to your consultants in charge of your care too they will be able to help. I think the infections are related to lupus yes, as well as medication you’re on make you more susceptible to infection also. please take your time with recovering and try not to be pressured to return to work quickly if you’re unwell! Take care and good luck xx
Just to add I’m also a female of a similar age, so I can relate to the normal worries your probably having, so any questions feel free to ask about my journey. There are also local lupus groups that meet up every few months to discuss and get valuable peer support. This is really helpful! Also despite having these diagnoses I live largely pretty well with lupus, I’m able to work full time, enjoy a good social life with friends and family and I also have a little girl who is 8 months old, so when you get the medication and care right you can largely live well with lupus a lot of the time try not to worry and just look after yourself and be kind to yourself! Xx
Thanks so much for your reply and sharing your experience! It is nice to hear about someone living well with lupus, having a young child and a full time job, etc. I also work full time and have an active - and often quite busy! - social life and I hope it will be able to stay that way. I'm fortunate in that any fatigue I experience is quite controllable, and I don't get too much in the way of joint pain and so on. I'd also like to have a family - I had a late miscarriage last year which could have been APS-related, but now it's being treated I'm hopeful.
I'm hoping the antibiotics are starting to kick in - I got very feverish and sick in the night but have had some fluids and antisickness and I'm feeling a lot better now.
I'm 🤞I'll be okay for work next week. The senior person on my team has been off sick most of the week - they have a long-term issue - and I don't want to be off too and for there to be a lot of stress on my manager, or a massive pile-up of work.
That sounds good that lots of your symptoms are controllable! Sorry to hear about your late miscarriage that must have been awful, I think that is common with undiagnosed/untreated APS, so you should be absolutely hopeful now that things can be kept under control and you can have a family I was very closely monitored n had even more medication/ injections than pre pregnancy, despite a bumpy ride me and Sophia are both fine and came out unscathed she’s perfectly healthy and beautiful and it was one of my biggest fears when I was going through diagnoses. It is awful when your going through acute stages of the illnesses/flares but sounds like u seek help promptly which is good, I hope u feel better soon. It sounds like u are conscientious n don’t like to let people down (sounds familiar) but try and make sure you are equal priority too! Sometimes I have felt sorry for myself occasionally through this journey, why me, angry, sad, but a lot of the time it’s just given me strength that I can overcome anything life throws my way and also to appreciate the small things I’m grateful for every day, when I’m feeling well, able to exercise, able to get outside n enjoy nice walks with my family so it isn’t all bad xx
It's really inspiring to hear about how you live so well with the condition, in spite of the difficulties. It's what I hope for too, but I'm still early after diagnosis so I'm conscious that I'm still adjusting. The consultant advised to see how things are in 6 months before thinking about trying to conceive again, so that's what we're planning to do. Tbh, it was quite difficult with the late mc (I was 18 weeks) so we wanted to wait a bit anyway.
I'm back from hospital this afternoon but due to go back for a follow up on Weds (not sure what the plan is with that!). I'm still feeling a bit grotty, but hoping that with a restful evening I'll be okay for work tomorrow... Annoyed that I just lost my weekend entirely though! 😒
I am so sorry to hear you have been so unwell and hope that you are feeling better and make a full recovery very soon.
As regards your manager being eager for you to return to work, I attach a link below to our publication about working with lupus. Should you want a hard copy of this, you can request one through our website. We also have a publication for employers which you can also download or request from the website, in case you think this may be helpful for your employer.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
try not to worry and just look after yourself and be kind to yourself! Xx
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