Newly Diagnosed

[ChloeScotland]

Hello, I’m new to this forum and was only diagnosed with SLE in late December. I’ve also got secondary triple positive antiphospholipid antibodies.

I’m 26 and I’ve always lived a very active/outgoing lifestyle and have always tried to be healthy so it I’m finding it all a bit difficult to process.

My diagnosis was not straightforward and i seem to get the impression from reading other stories that this is very common. However during my appointment with a rheum consultant he suggested that I wasn’t having an active flare and that I would know about it when I had one and that basically it was by chance they’d done the bloods that identified lupus rather than my presenting symptoms. From what I’ve gathered mine is quite mild and they seem to believe I’ve not had a ‘flare’.

So does a flare mean you have extremely bad symptoms? And that ‘normal’ is just some mild symptoms? Or is your condition supposed to be managed so that you normally have none to minimal symptoms and a flare is anything above that?

This has all left me slightly confused as I struggle a lot with fatigue and have done for some time but assumed this was my ‘normal’, alongside raynauds, cold sores/blisters on my hands/feet, brain fog and joint pain. I’m also hypermobile and the doctor suggested any joint pain was linked to that rather than my lupus. So I’m not entirely sure if these symptoms are normal or are suggestive of a flare or what a flare even is…

I was started on hydroxychloroquine and was on 400mg for three months and then have been reduced to 200mg a couple of weeks ago. These last two weeks I’ve been more fatigued than normal, my elbows and all the joints in my hands have been extremely painful and have been getting worse (have been given symptomatic pain relief) but does this mean I’m having a flare? or is this just my body reacting to the dose decrease? Or is this just lupus and my new normal?

Still very new to all of this and trying to learn but I still feel very confused. Any advice would be a huge help.

Also please correct me if I have said anything wrong!

i have also reached out to my GPs etc but there’s no lupus centres near me and it’s proving difficult to get in contact with anyone with experience with lupus to advise me.

Thank you for taking the time to read

[Sunshine634]

Hello

I'm possibly not the fountain of knowledge that others who reply will be but a lot of what you've said I can relate to!

I've had my diagnosis for nearly a year now I'm 33 and too was started on a higher dose of hydroxychloroquine which I felt made my symptoms a dream to deal with, they reduced them due to my weight apparently you have to weigh over a certain amount to remain on the higher dose but that was my reduction reason and then they added in methotrexate to the mix.

I don't seem to have found a happy medium yet my symptoms do flare up on a weekly basis, my new normal is very swollen sore hands I only have 1 finger I could use as a hand model now hehe

Flare ups - I think are unique to each person and it really depends on how your lupus presents itself. I've read a lot of different symptoms on this forum, and it does seem lupus effects us all slightly differently. I found keeping a diary helpful and taking photos to show to my specialist helped because you can't guarantee when you get your next appointment these symptoms may have settled.

Keep living a healthy and active lifestyle, listen to your body when it's tired! I've gone from high impact exercise 5 days a week to some weeks just a walk. Mentally I struggled with my diagnosis I all of a sudden felt different, worried and scared and a little sorry for myself but it's best to be kind to yourself - listen when your fatigued and allow the rest.

There are lots of resources online to find support this platform being one of them! My experience of GP's is that they have little knowledge and that's not in a disrespectful way they know a lot about everything but the rheumatology specialist are your best point of call - but getting in touch with them is often difficult!

I feel I have rambled with very little advice to be given so apologies I'm sure more will reply with better advice and support but know your not alone in the lupus land, there's lots of us to lean on and if you need to talk then just drop a message xx

[ChloeScotland in reply to Sunshine634]

Hi,

Thanks so much for replying. It’s even just reassuring to hear I’m not totally insane.

I think that’s possibly the same reason for my reduction in hydroxy - I was the same I found the 400mg to really helped! My GPs contacted rheumatology to see what they recommend so hopefully hear from them soon.

I’m sorry you’ve not found your happy medium yet but hopefully you’ll get there! I can relate to the swollen joints that’s for sure and I suppose it’ll just take time and more experience to gather what’s hypemobility based and what’s lupus based.

That’s really helpful about the flares - again I guess it’ll just take a bit more time to get a proper understanding of what my ‘normal’ and what my flares are. Keeping a diary is a good idea I think I’ll start doing that.

I think I struggle with the how much it can fluctuate from day to day and how you can be totally fine and active one day and then not the next. Also quite tricky when you get the classic ‘but you look so healthy’ comment

I understand what you mean about GPs, they’re helpful but there’s only so much they can do without advice from specialists. I’ve reached out to the nurses and hopefully will hear from them shortly too.

Again, thanks so much, I’m beginning to feel less overwhelmed with it all 🙂

[Sunshine634 in reply to ChloeScotland]

Of course you are definitely not alone!!

We are all in it together! I get told all the time you look well its frustrating but I probably would have said the same to someone if the shoe was on the other foot. I've decided to do some fundraising and raising awareness in my work place which is beneficial for my own knowledge and also spreading the word in a positive way!

I think lupus awareness day is the 10th of May and there is something which suggests doing something daily from the 1st until the 10th to raise money, my plan is 10,000 steps a day which hopefully will be achievable 🤣 we will see but thinking my negative can be a positive xx

[Maycontainnuts]

hi Chloe, just sending some love as you set out on this confusing and frustrating journey. I can only speak from my perspective, every single one of us experiences this blasted condition differently though obviously there will be symptoms in common and there is plenty of overlap of symptoms with other AI conditions which often makes diagnosis difficult. As I have always understood it (but I’m 64 so I may be operating on information since revised) ‘mild’ lupus refers to a manifestation of the condition where skin and joints are involved, ie no organ involvement. There may or may not be progression to organ involvement over time. Hence the necessity for monitoring of organ function through blood tests & other investigations. Whatever symptoms we do have can wax and wane in response to environmental factors such as stress, sunlight (even certain types of indoor bulbs for some) and all the usual culprits of ill-health such as diet, lack of sleep and exercise. You are starting from a good place as you are an active health-conscious person - keep it up! I was unable to tolerate hydroxychloroquine and had to come off it after a few years but I suspect will need to revisit soon, I know it offers certain protections eg cardiovascular as well as dampening down joint symptoms and alleviating fatigue. Only you will be able to work out what constitutes a flare as our blood markers don’t always correlate with symptoms (well, mine don’t anyway sometimes I feel rubbish but my bloods are ok. Note, never normal, but stable). Personally I find fatigue as the biggest indicator. It was explained to me that all our immune system is on overdrive - fighting non-existent threats - so our body is bound to be exhausted. So keeping stress to a minimum is a must to reduce the time our body activates the fight/flight response which floods our body with stress hormones. A important factor of our wellbeing lies outside our control - access to a good rheumatology team - this is a postcode lottery and I for one don’t have the financial means for private care. I hope you are fortunate in that respect. I’ve had to learn to become assertive in my dealings with my GP. I ask for double appointment slots and exemption from the “one problem per appointment” rule due to the nature of AI conditions being a constellation of symptoms. Your rheumatology service may have an email/telephone advice line but if it’s anything like mine, chase up and be patient. I’ve found heaps of experienced voices and supportive kindness on here. It’s a steep learning curve Chloe, you’ll need crampons All the best x

[ChloeScotland in reply to Maycontainnuts]

Hello,

Thanks so much. That’s definitely helped me understand it all a bit more. It’s not affected any of my major organs (yet) so think I am classed as mild luckily. I guess it’ll just take some more time to try and figure out what my triggers/flares etc are - although I think stress is defo one of mine so I’ll maybe need to be more aware of what’s stressing me out and ways to manage this.

That’s really helpful explanation that it’s a case of trying to minimise the overactivity and stress of our immune system. I think I need to teach myself that it’s okay to take more time to rest and that looking after my health needs to become my top priority in a way that’s different to those without autoimmune conditions.

So far the rheumatologists I’ve seen have been helpful but might need to do something similar and get a better relationship with the GP so that if I need longer appointments due to all the different symptoms etc they understand a bit better.

Thanks again, I definitely think I’ll benefit from this platform for support ☺️

[Chris21]

Hi chloe, youve got 2 great explanations already! ive been on 400mg hydroxychloroquine for years, they wanted to reduce it to 200 the explanation was because it can affect eyes ( you must see optometry and get checked yearly) i tried for 4 months but ended back on 400 as joints hurt too much.

when i first got diagnosed, it was the fatigue, that was the most difficult, i found my eyes were ‘too heavy’to keep open. also i found that other auto conditions crept in as ive got older. all manageable one way or another. my idea of a flare is when my joints really hurt or my glands swell slightly (means im tired) i think the bloods show when its active by being highly out of range.

this group has a great bunch of people that can give lots of advice on their own experience and dont be afraid to ask any question, even if you think its a silly one. you can also have a rant if you need to, weve all been there and understand what youre going through. also look at the publications that lupus uk have, they help make sense of some of the things that you might not understand. x

[ChloeScotland in reply to Chris21]

Hello,

Thank you, that’s very reassuring too. I’ll see if my symptoms ease off over the next couple weeks/months and if not I’ll maybe ask about stepping back up as long as it’s safe for me.

That’s helpful to know about what you class as flares even though I appreciate they’re all very individual. I guess with more time I’ll get an idea as to what’s my baseline and can figure out flares from there

I’m definitely learning how kind everyone is on here and how willing they are to share to allow others to learn/gain assurance.

It’s really reassuring knowing I’m not alone in this 😌

[Brackensmum]

Hi Chloe, you've had some superb replies and there's not much I can add other than try to keep your spirits up. When I'm not in a flare I tend to suffer from fatigue, mouth ulcers and skin rashes but all in all still lead a normal life. I have 2 cocker spaniels and over 2 acres of garden so I do keep very active. My flares have tended to affect my liver with off the scale readings, jaundice and unbearably itchy skin but the flare I'm just coming out of gave me totally debilitating joint ache and peripheral neuropathy for 10 weeks. I gave in to steroids for the first time while waiting for the hydroxy to kick in. Then about a week ago I woke up and I could turn over without pain. Comes to something when you rejoice at being able to pull your own knickers up!! So flares do differ but I'm incredibly lucky that I have good long periods where I can live a normal life. Just listen to your body and never feel guilty about lying around doing nothing!!

[ChloeScotland in reply to Brackensmum]

Hello,

Thanks for sharing!

I’m glad to hear you’re still able to live a very active life and have long periods in between flares despite the flares themselves not being great.

It is definitely confusing how quickly it can change day to day and how the symptoms can completely change as well but I suppose the more I learn from others the better prepared I am.

Yep, the learning to not feel guilty about needing to just rest and take it easy will defo take some time but I’ll get there. Need to just make sure I’m putting my health first and everything else after that

Thanks again and I hope you feel a bit better soon 😊

[Wizz13]

Hi Chloe, diet is usually the biggest trigger for symptoms for me. I’ve had lupus 7 years and know which things make it worse. An indicator of flares are worsening of symptoms and you can flare to different degrees. I’ve been in an active flare for 4 years which means my anti dsdna (disease activity) levels are very high. So clinically I’m in a flare. Over the past 4 years I’ve had low levels of symptoms and very high levels of symptoms. It’s so variable and largely depends on stress levels, how well I’ve slept, what I’ve eaten etc. I have followed the goodbye lupus protocol a few times and always seen improvement in symptoms and bloods. Even cutting dairy and gluten from your diet massively helps. Whole foods, cut refined sugar etc. That all helps. My problem in the past has been sticking to it. But I’m now at the point where my organ involvement has got bad again that I have no choice but to do all these things and stick to them. I believe the illness stems from the gut - there’s lots of info out there on leaky gut and autoimmune disease. I wish someone had pointed me to that a lot sooner which is why I’m sharing here. I wish you better x

[Gm131987]

I cant advise, but I just wanted to say I am new too. I was diagnosed UCTD two years ago and a month ago during routine maintenance blood works they picked up a positive lupus screen, ana and rheumatoid factor for the first time.

This has shocked me as at the time and past 12mo i felt i was actually getting 'better'

However, since then it has gone downhill, i am now going through an awful flare and it makes sense that they found those results.

Still, i feel shocked disappointed and scared. You aren't alone. My flare symptoms are painful and swollen hands too, also very bad hips knees and ankles. Ulcers and raynauds are worse and fatigue on a next level. Sleeping very heavily. I dont know if this resembles yours?

I am fairly young too and also lived a very very active healthy life. I feel the same way as you about accepting these changes and mourning the life I had before, especially as I am a mum of two.

Always here if you want to chat or just plain rant!!! Take care, Grace x

[MusicalFurbaby]

Hi ChloeScotland, sorry you’ve been having such a bad time with pain and fatigue, not to mention the general confusion about what on earth is going on! I too have hypermobility but I also definitely have lupus; I believe the two are correlated. But it is definitely possible to have both.

I am on 400mg hydroxy which unfortunately has not helped at all with joint pain or fatigue (but has done wonders for my rashes and sores). Reducing your dosage could certainly result in worsening pain, compared to the pain relief you were experiencing before.

A ‘flare’ just means worsening symptoms. It could be a mild flare, where the joint pain, for example, becomes more noticeable, or it could be severe, where you end up in hospital. I have plenty of mild flares which last a week or two, and fairly regular major flares resulting in hospital visits and time off work. Flares are often very difficult to work out, and it often takes me a few days (at least) to figure out that yes, this is probably a flare. Blood work can also help to confirm a flare: my C3/C4 tends to drop when I’m flaring. ESR and CRP can also confirm, but these tend to stay pretty normal for me. Remember, normal bloods don’t mean you’re not flaring! But positive results can confirm a flare too.

Your current symptoms could well be a combination of a flare plus reaction to a lower dose of hydroxy, but you might never really work out which is causing which. The bottom line is take care of yourself, and go back to your rheumy if you believe your dose needs to go up again, or if you are concerned about your current flare/symptoms. Look after yourself 🌻🌈