my partner was diagnosed with SLE during pregnancy. We had a little boy 21/06/22 who has neonatal lupus and congenital heart block, he had a pacemaker fitted 24/04/23 so things have been hard. My partners flares are getting worse each time, we did a kidney home test and it came back positive. The hospital have done blood tests and taken urine samples, say everything is normal although she has symptoms of this getting worse. The hospitals words were “until you get worse we won’t do anything”. she’s been having her worse flare up this week, I try to help, I ask her what she wants me to do but we argue a lot for me not doing things when I’ve said I’ll do something and she’s annoyed so does it rather than let me. I keep trying to get her to stop doing so much and rest but she doesn’t listen. We literally have no support from family or friends, not even to help with having our son, I’m self employed and I’m worried what’s in store for the future when she gets worse… she has the mind of “it needs to be done now and if it’s not done right now then she’ll do it”, The hydroxychloroquine make her feel worse and so she’s not been taking them everyday, she smokes, doesn’t exercise or do a daily walk and she doesn’t eat healthy…we have had alot of stress with housing, work and money the past 12months and it’s all making her SLE take her health quicker. I’m asking for help/advice on what I can do, how people with SLE are dealing with everyday life and the conditions that affect routine. I have thought about getting her to try CBD drops as I’ve heard it’ll help but not sure if it will or not.
Any help or advice is greatly appreciated, I want her to see our little boy grow up
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JamesF87
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Hi James, I am so so so sorry to read your post and above all, the diffculties you are all facing. I hope both the baby and your partner recovers quickly.
Couples therapy could help but your partner should/must continue taking hydroxychloroquine. That is a life saver. It takes about 2-3 months to start working. Your partner might need additional medication to control lupus. You must keep close communication with her consultant if you can.
Lupus is triggered by tiredness, sun, stress and birth as well as other factors. Cigarettes are no no. Sleep and rest saves lives. Keeping a bottle of water by the bed help focus on taking hydroxychloroquine on time. My consultant suggested i take two tablets at the same time just before bed. So there is not much movement needed if you place it where reaching out is easy.
Many relationships are tested by SLE. My daughter was also diognosed after my grand daughter's birth recently, joining me and my younger daughter in Lupus journey. Now all of us have it. I shared this to tell you we are all on the same boat one way or another. So please dont feel alone. We have great support here. We never met each other but can joke, laugh and cry together.
I keep our life simple. Less furniture, less clothes, less dishes and turned to minimal living to preserve my energy to do less so that i dont spend hours ironing, washing drying etc, it preserves my energy, and my daughters do the same.
Simple but effective life changes could do wonders in your relationship freeing time to focus on your family. I had lupus and had to earn/care for my family. It is very though. But go easy on yourself. Organise everything the night before if you can. I made our wardrobe lupus friendly. Everything is reachable and simple. Jeans, tshirts dresses, only few but allows me to reach and wash them quickly and gave most our belonhing away, I could not carry the burden. They meant etxra washing, drying, tidying. I now have basic life but i have time to read, go for walks, washing etc
Our diet changed, beef broth(if you eat meat) , fish, kefir, vegatables and rice. Simple but we improved our gut health. And lupus flare can be pushed away with simple but effective life changes.
I only shared our way of battling with lupus. Each journey is different and i hope yours will be easier with few chanfes.
I think love is great medicine, keep giving it to your partner.... and for you, it must be very tiring and confusing. Please dont feel upset if she has a bad day. It is not because of you forgeting something to do. It sometimes feels like we are running a car without petrol and it hurts so much and life gets difficult when one can not move. Spoon story is a great read to understand Lupus if you have not read yet.
Hi JamesF87, gosh! What a lot to take on board in a year! Firstly, I hope your Bonny baby is now doing well. Babies are hard work at the best of times and can put pressure on any family. Secondly, you talk about your wife regarding her health with worse flares, not taking meds etc. it’s possible that having only been diagnosed a year she hasn’t actually come to terms with her illness. I know when I was diagnosed I wanted to carry on doing everything, it was only when the fatigue got the better of me and I had to stop fighting my body that I began to realise I had to change my lifestyle. Thirdly, have you considered how much this last year has affected your own health? Have you spoken to a doctor about your concerns, it does sound like you need some counselling to help you work through your own emotions.
If your wife is not feeling well, encourage her to go to the doctor, if hydroxychloroquine isn’t helping there’s plenty of other meds that can help. I’m not quite sure why you would do a kidney home test, are you in the uk? As for trying Cbd drops what does your wife think?
Please continue to reach out here, we are all supportive the best we can and there is also lots of help and advice from lupus uk. Wishing you all the best. Chris x
Sounds like you’re doing your very best in a really difficult situation especially having a new, very poorly little baby. 🙌
You clearly care deeply for your partner & precious little son…..
You’re a superstar for coming on here, it’s a great place for information, support, and good old fashioned camaraderie….even if you don’t necessarily find what you’re looking for, hopefully you will have lightened your load somewhat - most of us have many battles & challenges with this disease.
The 2 Health Admins Debbie Kinsey & Michaella Smith are mines of information & I’m sure they’ll happily & helpfully point you in the right direction for resources useful to you and your partner. …. Look down the right hand-side & you’ll see them under ‘Moderation Team’/‘Contact Us.’
There is a helpline too - Being newly diagnosed, (let alone all that you’re both dealing with!), can be overwhelming and it is early days in the Lupus journey all 3 of you are travelling on.
Maybe, with some encouragement your partner might consider coming on here, (just to read others’ stories or even access the Helpline).
There’s so much I’d like to say to you but my reply is already lengthy & you’re a busy chap! 😀
Perhaps Hydroxychloroquine isn’t the right medication for her, I could not tolerate it at all & had an adverse reaction to it quite soon after starting it; What suits one doesn’t necessarily suit another! I thought it was awful stuff & will never take it again 🥴
There are many other medication options but if her Rheumatology Team don’t know what you know, ie they’ve not been told of her & yours struggles, then they obviously can’t help 🙃….Be persistent, as tiresome as it is….
Assuming she’s seen a Rheumatologist, there is usually an Advice Line as part of the Rheumatology Service; Contact them by phone or email & if they’re like mine, they WILL get back to you…..Don’t suffer in silence 🤐
GP should be able to advise, help, support & sign post to appropriate services, agencies, charitable organisations all of whom can assist all 3 of you along your way. x👨👩👦x
My husband sometimes speaks to GP on my behalf if I’m having a really bad day which eases the stress of it all ….. Just a thought x
Wishing you all the best & hope things soon start to improve x 🌸 x
JamesF87, welcome to the LUPUS UK forum, I am so sorry to hear about your family's recent struggles with diagnosis for your partner and baby. I can see you have received some great advice and responses, however I will still include some information below that could be useful.
We have a regular online support group for parents/guardians of children with lupus, you can find the information about the group and how to sign up using the link below:
I have also attached a link to our publications page below, which include information about caring for someone with lupus, how to improve lifestyle/habits, types of medications and the impact of lupus on the kidneys:
I know that Turquoise-1 mentioned our helpline... however, so that you have it, the number is 01708 731251, and it is open Monday to Friday 9am until 5pm. I am also happy for you to ask for me on the helpline or email me directly at michaella@lupusuk.org.uk.
Rest every day as much as needed helps a lot. If she doesn't rest she'll get over tired and more stressed. I sleep and rest for a couple of hours every afternoon. If I don't I feel awful and dizzy so I don't fight the tiredness any more. If hydroxychlorouquine makes her feel sick, try another brand. Most of us have changed brand usually to zentiva or blackrock hydroxychloroquine as many of us can't take Bristol labs or ipca brands, we just feel sick on it. Absolutely no smoking!! Can't stress that enough. Perhaps she's in denial maybe about the Lupus it's hard to get your head round but she needs to have a good consultant rhuematologist and talk through everything and how to handle the future. Lupus uk have a helpline to but she needs to speak to a professional about dealing with this illness. Lupus uk have lots of local groups. We have a zoom meeting every month and face to face meet ups where you learn so much from others in the same situation. Talking to others in the same boat helps so much. There are many podcasts about lupus you can listen to to educate yourself and help your wife. Lupus uk has some and birdbath.org.uk has several. You may need to learn to encourage her to look after herself. You have a young child and she needs to stay as healthy as possible for them and you. I hope things get better for all of you.
Very sorry to hear of all you are going through and hope your partner has the support of a good rheumatologist as that is key.
The rheumatologist guides drug treatment, including if there are side effects.
I had rough start on hydroxychloroquine but then under my rheumatologist started back on a lower dose and built up. Then the drug worked really well. The prescription is for Zentiva brand and I take it with a big meal, usually with smoothie or milk as I feel that helps my gut.
I was only diagnosed last year. Twice I have been on short courses of steroid and that helped bring the worst symptoms under control.
Keeping a journal helps
Mine is done on squared paper on which I draw out seven bars, one for each day of week, and split bars up into 24 hours.
Contacting Lupus UK for advice was a game changer - they put me in contact with a local group. Some meet using Zoom so it does not matter where you live. Even if you are a few counties away.
hi James just wanted to say I’m so sorry this is happening to you and your partner, great advice from LalSD so I won’t add anything more - hope things improve soon xx
hey James you’ve had some fantastic replies and what a lovely partner you are reaching out . Keep talking and definitely keep posting when you have questions as often the knowledge on here is as good as the GP 😉. I won’t say things get easier but things become more manageable and you’ll both start to feel a little more in control. If you are in the UK there is great support now for anyone who wants to stop smoking . Take care xxx
Bless you for being such a good partner, sending so much love ❤ to you your partner and your little baby 🐤 xx
Hi James
I am so sorry you are going through all this, that your family is -but am pleased you’ve reached out. I can hear the stress, worry and upset in your message. You’ve had such great advice and I’d just add something, in case it helps you.
As far as irritability and how your partner gets at times, absolutely don’t take it personally. You’ve a lot of stress and struggles and this make a Lupus flare worse and last longer. Flares can cause irritability and make you feel like you can’t think straight, things don’t make sense fully, so then you’re not thinking logically and can be irrational. For some this can happen when a flare is lasting and you can’t get out of it. Believe me, when you feel like that you can even argue with yourself! Plus, a massive part is the frustration of feeling so ill, the not willing to ‘give in’ to the Lupus, the fear of what’s happening to you. So, when your head in that place plus you feel poorly but there’s jobs to be done - the only way to deal with it is to push on through it get on with it. Yes, it’s irrational, but you can’t think of another option - it’s almost like proving to yourself you’re not ill really, but yet you know you really are ill! The effort that takes is immense and you feel worse and it makes the irritability and irrationality worse. You’ve seen the cycle - but I hope this helps explain that it’s not to do with you.
Hydroxychloroquine isn’t good for everyone. It can affect thoughts and make some people really irritable, especially if it’s making them feel worse. The side effects for some can be like having a flare that doesn’t go away and generally be really unwell on them. Plus, if your partner isn’t taking them often, your body doesn’t learn tolerance to the drug. It takes around 4 weeks or so for side effects to either level off or go but it takes 3 months for the drug to work-if it does. But some of us just can’t tolerate it. I speak from personal experience, I can’t take them. So, definitely call the rheumatology department and let them know what’s happening. Make a list of how she is now, and also if any extra symptoms started after taking the pills. How long she’s been like this.
The immediate thing is Hydroxychloroquine, the ongoing flare to initially sort out. Then, you both need some support, either as others have said from Lupus UK, (or if you felt it’d help via a self referral counselling as you’ve a lot of difficult stuff to cope with). I’d leave the CBD of now personally, and as for diet and smoking - yes, it’s important but not immediately, that’s something when your partner is in a stable enough place to deal with those.
Things won’t always seem this bad. It’s not a certainty that your partner will get worse, she may improve and level off once she gets on the right medication to control the Lupus. Don’t panic at the moment about the future, try to focus on the next step.
Post again if ever you’ve questions, however small, there’s always someone here. Plus, if ever your partner wants to vent her frustrations or fears or has questions, it’s a safe space (she couldn’t say anything we’ve either never felt or heard before!).
Hi James,Sorry to hear, you are going through really tough times at the moment. With a baby having SLE and a wife /partner It is not going to be easy until she recognises her limitations of what she can do and what she cannot do until then you have to step back and let her do what she can. And then let her ask for help. She is also going through a denial stage of wanting still to do everything herself and things has to be just as how it should be like it was . But with SLE and a baby , one thing you have to realise you and your health and the baby comes first everything else around you takes secondary . Things will take time to adjust trust me I have had this illness for over 12 years this will be my 13th year and i still have the tendency to over do things on a good day. But we all learn the hard way. 😊
Spacing out your day today chores. Trying not to be too rigid with your chores. For example:
If you set your washing day for Mon and Tue and you feel extremly tired those 2 days or a week you can still do them another day the washing will still be there it is not going to go away.
Just do a small load when you feel up to it. Do try to do a huge washing load space them out over several days . Do one a day or 2 a day. Things like Hoovering(left my husband to do those now😉) and ironing (I gave up those ) , cooking and baking I do cook when i am up to it.
Now , majority of SLE , have food in tolerance to certain food like garlic ,mushroom and tomatoes.
I cannot have garlic and mushrooms but I can have non acidic toms- home grown ones. If I have garlic or mushroom I swell up and get very inflamed and feel that I am burning up.
The other thing you will find is she might be intolerant to gluten or certain food which is causing her urine to come up with that results. Because I had that for a long time and they tested it and it came back neg and at the same time I was having continoues diarrhoea. So decided to stop gluten in the afternoon, found that no diarrhoea in the afternoon. When I totally stopped gluten , my urine cleared up. I was also getting pain on my right side and abdominal the moment I came off gluten all pain cleared and inflammation cleared. Drinking water is very important, i always have a large bottle of water with me even at night and where ever i am. She should be drinking at least 2-2.5liters a day.
It will take a while for this all to take in to action . You will need to do your own experiment which food is suitable for her. The right and healthy diet is important. Lots of green, and bright coloured veggies,fresh fish, meat, cheese. And multivitamin.With vit D make sure she has her sunglasses when she goes out and that she is fully suncreamed when she goes out as well with SPF 50+( best ones is L'Oreal and french brand cannot think of the name )brain fog that is another one you will find she will have trouble getting words out some days, making any sense.
I know it is alot of think of and being in the sun is important getting you Vit D wearing sunshade and hat. Always protect your eyes and your skin at all times.
Your partner /wife should have been adviced to stopped smoking when she was diagnosed with SLE and started with Hydroxchoriquine it will take at least 3-4 months before the effects kicks in . Also depending on the dose she is on.
It is very important that she stops smoking as it can effect her lung in long term as now she is immune compromised.
I dont smoke or drink but I have a lung condition and my SLE and it effects me day to day what I do.
As for CBD , has she been given any pain relief like paracetamol and tramadol and entroxcib(Arcoxia) , Nortriphyline any of those choices of pain relief were they offered to her??
These should be her first choice before trying the strongest drug. CBD is only option when pain is the extreme and you really need something to calm it. I would not go down that route unless it is absolutely necessary as it can be very addictive once hooked meaning your body is used to the drug and no other drug will work .
CBD is used primarily for patients who are having Chemo and those who are at their end of life . There are specifics list for those who can use CBD . Unless you are thinking of buying it from out side the NHS getting it from the NHS there is protocols .
I was offered CBD and I turned it down flatly because I know the side effects what it would do to me and I will not be able to function bad enough on my bad days when I am extremly tired. But to be on CBD no thanks. I said flatly No to the consultant. It was even offered various drugs instead of my current drugs I said to them No dont change my drugs as I am stable and they changed it with out my consent when I found out yes i was not happy least to say. All it back to normal now.
So I hope , you can get your wife /partner to come here to chat here it would be good for her mentally and giving her the additional moral support she needs and educational support too. There is so much here both of you can learn from here .
So ,hope this is not too much for you to take onboard if you have any more questions feel free to ask way.
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