So I was diagnosed in July this year with lupus and I'm trying to learn how to live with it. My symptoms were so bad that I had to miss some days at work. Then the consultant gave me some medication that worked well on month one but now all my symptoms are coming back. Obviously they are (consultant) busy and they can't see me every two months as expected. So, I'm trying to do the best for myself and improve my diet and fitness. However, any kind of motivation goes away as soon as I feel tired and foggy (which is most days at the moment). I read stories of people with no flare-up for years just by being "healthy". I was wondering how much of it is true and how to not give up? I don't really know what to ask or say here, I guess I'm just trying to learn more about Lupus and see how people cope with it....
New to lupus : So I was diagnosed in July this year... - LUPUS UK
New to lupus
Hi hope your well. Welcome to the lupus club. It’s not all doom and gloom.
I was diagnosed in 2021 and with my meds and healthy eating I’ve been in remission since then: So it definitely possible.
Feel free to message me for any advice. X
Hi, well that's really good to know. Thanks for sharing this with me. That gives me hope. Some days it's hard to think it's possible to feel better so really thank you 😊
Hi 👋
Sorry to hear of your diagnosis. This is a good resource for you to get support. I’m presuming you have Systemic lupus erythematosus. Unfortunately it affects us all differently and now two years on from diagnosis for me, it’s affects me differently now than it used to. If the symptoms are coming back for you then the meds are not working and the doctor needs to try you on something else / a higher dose. There isn’t a one medication fits all and often it’s a trial and error process. Some meds might not agree with you or you will have a spell of feeling good, then a flare up comes. A good supplement to take is Vitamin D, I take two tablets per day (2000 IU). Also sunlight can exacerbate symptoms so make sure you cover up and wear high factor sunscreen when you go out (even when it’s not a particularly warm day). I use a Factor 50 face moisturiser as part of my normal daily routine now. Try to get as much sleep as you can, I know my symptoms are much worse when I’m tired. If you can do some exercise and eat a healthy diet that will help you greatly. If I get a flare up of the rash on my face I use Bepanthen Sensiderm cream which calms it down.
Don’t give up. Be prepared to try different things until you find something that works well for you. I know it’s disheartening but you’re not on your own.
Thank you so much for taking the time to tell me all of these. Yes you are right, I have SLE and I already do most of the things you mentioned. I was recommended to take the same vit D (2000 IU) but once a day. I struggle to get the sleep I need as I work full time and also have to look after my daughter (although sometimes she's the one looking after me 🙄). Good to know about the cream for the rash on face, Thank you for your support and I hope you'll manage to overcome all your symptoms eventually
Hi, unfortunately lupus is different for everyone so there's no one cure fits all. If the meds you're on aren't working don't be afraid to stand up and say so! Medication can be increased or changed to alleviate your symptoms so don't ever feel you have to put up and shut up. I am one of the lucky ones in that I have flare ups which are totally debilitating but then long periods of remission where I lead a normal life. Last Christmas I could barely move but after 9 months on Hydroxychloroquine I feel great and walk 5 miles a day. Certainly a healthy diet and life style helps but there is no way of predicting when the next flare will come. All i can say is do not feel guilty for hassling the doctors and consultants until they get your meds right!
Hi, thank you for sharing your story. That gives me hope. I guess I'll just have to be patient until I get the right meds and it sounds like I'll have to wait for another few months for the hydroxychloroquine to properly kick in! I'll try to follow your advice and stay as healthy at I can and keep being patient 😊
Hi Mandino, welcome to the forum! No two forms of lupus are alike, and no two individuals with lupus are alike either, so our illnesses manifest in different ways. What works for some may not work for others. What would probably be helpful for you is to work out your ‘baseline’ with lupus: what does a normal day feel like, versus a day when lupus is flaring (symptoms are spiking).
For me, a baseline day looks like joint pain, fatigue and brain fog. Probably some rashes and sores going on. These never go away, they’re kinda ‘as good as it gets’. A flare, on the other hand, looks like acute and severe pain, trouble walking or standing, vomiting, unable to eat, unable to wash or dress myself, unable to work, and probably going to hospital.
It will take some time to work out what your baseline and flares look like. It might help to write symptoms down or maybe keep a diary. When you look back over the past few weeks or months, that will give you a basic idea of your patterns. But bear in mind that with lupus, one does well to expect the unexpected!
It’s possible to have lupus and still live a (somewhat) normal, productive life. I currently work part-time, am involved in church ministry, and pursue creative passions—as lupus allows. But this can change at anytime. Sometimes I am disabled for days, weeks or months. Things may get better for me; they may get worse. All I really know is how I am feeling right at this moment!
Hope this helps. Hang in there; with time, most of us do work out a way of living with lupus.
Hi, thank you so much for sharing your story. It really sounds like a good idea to keep track of the symptoms and see if there is a pattern. I read that flats ups could also be triggered by good? I knew about the sun but apparently it can be different for everyone. I'm still trying to understand these new "feelings" in my body. Just like today... I want getting great, sick, but went to work hoping it would get better. But it got worst and I was sent home. I find it very embarrassing because at can't tell anymore if I am okay or not.... I guess I'll learn with time.Thanks again
No worries. Yes, sometimes I go to work figuring I’ll be OK, and I end up going home. But other days, I do make it to the end of the day. Each day is different. I’m not triggered by sun, but I am triggered by heat. Took me years to figure that out, but now I can see there’s definitely a pattern with getting overheated and flaring. Hope your patterns start to emerge and make sense for you soon.
Hi Mandino974
The early days are almost the worst for the struggle to finally get the right meds for you. I am here as my daughter (24 years old) was diagnosed in June and we are still on the "journey" to reach the right meds. As she is still currently suffering worsening symptoms we are being seen within 3 weeks of last appointment - partly maybe due to their causing a delay in starting a second medication setting her back 2 month.
But it is clear that they work up from the mildest immune suppressant rather than hit it hard from maybe a step or two up on the medical scale. This to me as someone only watching a loved one suffer and live with this, is unfair as long term damage (sometimes possibly permanent) is happening.
I would say from our limited experience to most people on here - you have to fight your corner and be heard if things aren't working and you are struggling to cope whilst the medical side is still being trialled and adjusted.
I am praying that we get there too soon, as the symptoms in our case just keep on coming and new ones occur month on month.
But this forum has helped me understand and be able to support my daughter better and everyone sharing their knowledge and experience who is and has lived with this vile disease for many years is an incredible resource. They are so kind to share and give advice and support so this is a great place to be and not feel like you are alone in this.
Hoping you get to see a consultant soon and can get the medications adjusted to try to combat this.
Hi, I am so sorry for your daughter but she is very lucky to have a mum like you. My own mum doesn't seem to worry that much... what keeps me going is my own little family here. They are so supportive and understanding! You probably are one of the best thing to help your daughter in her journey. I'd like to talk about the meds with the consultant but I can't... I saw him once and since it's even impossible to talk to the secretary. I had to beg my gp to reniew some of my meds. At the moment it's just a waiting game and I feel that, at this rate, I'm no where near to finding a treatment that would work well enough on me. It's quite distressing to be honest.
I'll keep an eye on this forum/website. I have learnt a lot from it already.
Thank you for sharing your story with me and best of luck for you and your daughter 😊
Goodness - I feel so much for you in that position - I can't understand why your consultant isn't keeping you on the radar and monitoring how the meds are - since this appears to be every changing and with flare ups always room to have to adjust.
I also don't know if its a bit of a postcode lottery for care (offensive that that can be the case). I do feel somewhat blessed that my girl is under the rheumatology at her local hospital which has been monitoring her and she even has a phone number to leave messages for rheumatology nurses to handle, filter back to consultants and that has been a reassuring aid to her. I truly think you need to make your voice heard if you can - you cannot soley rely on your GP to handle your Lupus care. Please do shout from the roof tops if you have to, sadly we are all an NHS number in the scheme of things no matter what and fighting your corner is almost always necessary.
Im glad you have the support and care of your own family, cannot imagine anyone going through this totally alone - that would cripple me.
Please take care and thank you for replying, every conversation on this is a help to us all. X
If your medication your consultant gave u is Hydroxychoroquine it will take a few months for you to have a good effect I presume you are at a 400mg dose and then when down to 200mg after 6months. They normally calculate this according to body weight usually. As for me , I was non 200/ 400mg dose but currently this has stopped due to my eyes they don't know if it is due to my hereditary or the drug. This has happened before .So, back to you , if you said you have tried to improve your diet, what do you mean by that? Do you know that there are foods that lupus patients cannot have and that it flares their immune system up?
I still don't take garlic , mushrooms and I am still allergic to multiple of antibiotics. As I come up with rashes. When I have tomatoes , depending on types of them some causes inflammation and some causes just fever /sweats. I only have small amount of it . Just to make sure I have enough Vit/nutrients in my diet. I also do take multivitamins and multi minerals tablets. And high dose of cal and Vit D. Vit D taking it is important if you have lupus . This is due to my bones density issues . I am not old I am in my early 50s. And also have degenerative spinal and displacements , Bronchiatistis and heart murmur, Sjögren's diagnosed recently,
Just diet is not sufficient. To keep you healthy. Yes, lupus is known to make you tired and lethargic and gives you brain fog. It is very common thing for all lupus patients to go through that, it is something you yourself will need to adjust and your body to learn and get used to and you need to learn how to adopt and cope with the tiredness and listen to your body. Meaning when to sleep when your body asks you to don't fight it . You sleep as you need to . You will feel much better . Some days you might not feel half as refreshed and feel that you need more sleep. If you do , after what you have done when you woke up go back to sleep more you will be surprised how much your body needs all that sleep.During my early stages of my SLE, I used to sleep at least 16 - 18 hours a day. Yes , it is alot of sleep. It was succumb with my migraines as well which creased gradually with in a month of taking it.
All I can say is not one person is the same everyone is different when it comes to SLE .
Rest well ,sleep well and take care my dear xxx☺️❤️
Hi, thank you so much for sharing your experience with me. I've started to take hydroxychloroquine just over 2 months ago so I suppose it's not working very well yet. I'm only on 200mg but don't have to reduce it (at the moment). I didn't know food could trigger the symptoms until recently. The issue is that since I'm running out of meds, the symptoms are just getting worse over time. I can't see the consultant to discuss this yet so just have to wait. It's not like I'm having flare ups, but more a constant state of pain and fatigue (and feeling sick!) so it is very difficult to see any correlation between my symptoms and anything else at the moment. Thanks again and I hope that you'll eventually reduce your flare ups even more
Don't let yourself run out of meds !! I am surprised that you are on 200mg . When. I started on it initially I was put on 400mg for 6months then reduced to 200mg but it was of no good then the only solution to stabilise was to get me on 200/400 alternative days. It was very oblivious when my dose reduced to 200mg as my pain and fatigued Increase so did my brain fog. I basically made sure I ruled out all goods that effected me first made sure that was clear . That made huge difference in my joints and fatigue. Currently I don't get any joints pain or much fatigue only time I get it is during my flare ups- it is a burning sensation I get in all my joints and I get very tired for a day or so and the brain fog is really bad Apart from that the rest of my joints is ok. My current main issue is my hip and back which I am getting sorted out . So hopefully once they are sorted . I should be good as "new" 😂 famous last words until something else crops up...
Btw I was diagnosed over 12 years ago.
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