How are you beating it?

[LaylaLin]

Hi, I am 30 and a new mum. I was diagnosed with Lupus after the birth of my first child 1 year ago. Like most people I almost certainly had it for many years before hand. I live quite remotely and don't know anyone to swap experiences with. I thought the process of being diagnosed and starting treatment (hydroxychloroquine) would help, whilst the rashes have gone I still feel so incredibly run down. My rheumatologist doesn't recommend going up the treatment ladder yet. Today I feel particularly bad hot, in pain and my brain just aches. I just want to know what do you do that helps you function normally again? What tips do you have? Thank you x

[Sara_A]

Would they consider steroids if the hydroxychloroquine isn’t effective enough??

How long have you been in it?? It can take a while to start working.

If ur symptoms aren’t being controlled enough then maybe they do need to look at stepping up ur treatment.

I have been having this flare since the birth of my 2nd baby who is now 2yrs. My first is 5 yrs so I had a toddler during my 2nd pregnancy and was very tired esp in first 3 months.

Then having a new baby and a 3 yr old was such hard work, it still is really and I get very exhausted, I take a lot of different meds 25 tabs a day!! Inc slow release morphine as I couldn’t even pick my baby up my hands were so bad.

Do u have much help at home?? My partner is great as most days I literally am dying for him to get home so I can go to bed with the kids at 7pm!

If it’s just a bit of a blip then I’d ask them about steroids, I’ve had to increase my dose 2 wks aygo and have actually been able to cook t most nights whereas before my partner was lucky to have a meal ready once a week! I usually take 5mgs daily anyway, have for approx 9 yrs and then when worse I increase to about 20 mgs daily.

It’s very hard with little kids when all u want to do is go to bed!

[LaylaLin in reply to Sara_A]

That's really helpful, thank you. I will ask about Steroids. I almost certainly had it before my baby (raynauds, arrhythmia, clotting problems since teenage years), but after baby I feel like it's not well controlled as I still have hair shedding etc. I know exactly what you mean about not cooking dinner, climbing into bed at the first available opportunity. I'll speak to my rheumatologist about steroids, fingers crossed. He mentioned to me before that they don't have good treatment options for fatigue - have you found any lifestyle tips that help? I found if I do nothing all day it can make me more foggy but if I over-exert myself I get a rebound tiredness.

[Sara_A in reply to LaylaLin]

There is nothing that u can take that specifically helps the fatigue but if the meds for the lupus keeps the disease under control that’s meant to help all round.

The steroids seem to give a general boost therefore helping with everything. They are no ideal and I hate having to increase them cos I eat boxes and boxes of cereal as they make me more hungry! But what they try to do is maintain u on the lowest possible dose ie 5 mgs.

I’ve just had to reduce my working hours down even further! I was only doing 15h a week but gone down to 12h a wk so just doing 2 shorter days and starting later in the morning.

[Paul_Howard Partner LUPUS UK]

Hi LaylaLin ,

Welcome to the LUPUS UK community forum - I'm glad you've found us. I'm sorry to hear that your treatment isn't currently effective enough in helping to manage your symptoms. I hope that the advice and support from other members of the community here will be helpful.

We have a series of blog articles which cover various symptoms and other topics and include quite a few self-management tips and techniques. The articles cover things like fatigue, pain, stress etc. You can take a look at lupusuk.org.uk/category/blog/

[LaylaLin in reply to Paul_Howard]

Thanks Paul.