Various questions, sorry 🥹

[JLAR01]

I hope you’re all doing as well as you can be 💜 this is going to be a long post so firstly I just want to apologise but any advice would be massively appreciated. I have also, attached a photo of my kitten to put a smile on all your faces, as she does mine on a daily basis 🥹 (scroll to the bottom for the questions if you don’t want to read the whole thing).

Back in February 2023 I developed these really sore red ‘marks’ on my fingers and hands. After months of being dismissed (and diagnosed with eczema: honestly 🤡😭😂) they finally did a biopsy in September 2023 after presenting with various symptoms associated with Lupus (mainly fatigue and joint pain and hair loss at this time) my biopsy came back positive for Tumid Lupus. I know most of you will understand my frustration, pushing and pushing for a biopsy and for no one to take me seriously because apparently I’m ’too Young’ to have lupus and ‘just have anxiety’.

Since having this biopsy, and as time progressed on as did my symptoms. I was finding myself flaring A LOT. Sometimes for days, sometimes for hours, with no indication at all as to what was causing them as stupidly most professionals were giving me hope that it wasn’t lupus but I kept arguing that I know my body and I’ve done enough research to have a suspicion that this could be Lupus. The symptoms I was experiencing were joint pains, rashes, severe fatigue, dizziness, ulcers, hair loss and swollen lymph nodes in my neck.

Anyway, so time ticks on and I’m constantly in A&E, Rheumo kept saying they didn’t receive the referrals and the expeditions sent by my GP but for one and marked me down as ‘routine’ lol. So after chasing this for what felt an eternity I was finally offered a cancelled appointment last month. When I attended, my consultant did say that I do indeed sound like I have SLE also, as I am showing a lot of the symptoms and that he would like to diagnose me using ANA etc blood tests. He started me on Hydroxychloroquine 200mg tablets to take one a day and Prednisolone 5mg to take 4 for 2 weeks then 3 for 2 weeks until I’m reduced down to stay on 1 tablet daily. I also had bloods taken to attempt to get a formal diagnosis - then I got COVID (worst experience of my life 10/10 wouldn’t recommend) 😭😂

Obviously, I haven’t been taking these tablets long and I have seen a massive shift in my health over the last 11 months. I get, that some people have had to wait years and years for something that I only have had to wait a year for and I am grateful for the fast diagnosis and ofcorse, overwhelming support from my amazing partner, but I need support from people who understand. I have recently become very withdrawn from my friends as I was trying to come to terms with the fact that I have lupus, before I involve other people in that conversation. I have now started seeing friends and being open about my lupus so they have a better understanding - but I can’t help but feel like a burden to everyone some times. I have a joint appointment with rheumo and dermatology in march, so I figured asking for support on here first would be a good idea.

So here goes:

1. What’s everyone’s experience with Hydroxychloroquine and have you got any advice about taking this? I know I haven’t been on them for long at all but I don’t seem to notice a single change in anything such as flares, pain, fatigue etc, it’s still pretty much the same.

2. Today I saw on my NHS app that my Anti Nuclear Ab (HEp2) came back “positive fine speckled”. Does this mean my ANA is positive? That I have SLE? Other blood tests have been done but I can’t see the results on the app until mid February. Have I been sat here crying for the last hour for no reason? (Recent blood test results that were out of range were: GGT, Phosphate, Lymphocytes, MCH, MCHC, White cell count).

3. What’s going to happen if I am formally diagnosed? I have no idea what to expect, do we have to have routine bloods etc?

4. How am I supposed to determine what a flare is and what’s triggering them? It seems like everything is making me feel unwell at the moment 🫡

5. I am covered in tattoos, but haven’t had one since my health started getting bad. My lymph nodes in my neck were raised for 6 months following a back piece…. What’s your experience with this? Advice if I do get another?

Sorry again for such a lengthy post, and if you did read the whole thing, thank you 💜🦋

[Sunshine634]

Hello JLAR01

I hope your OK, I'm just over a year into my diagnosis of lupus and rheumatoid arthritis, I can't answer all your questions and the blood results one I'm not sure but I can definitely sympathise with you on many aspects!!

Feeling like a burden- I have this feeling all the time I feel like I've become consumed with my problems and appointments and that I'm not the person I used to be. It's been tough getting people to understand and that has led to feeling a little isolated. I have started writing down the positives of each day and reflecting on them. If it's a bad day I embrace it and think tomorrow will be better. I've had some moments of screaming and crying into a pillow which I'm not ashamed of it helped! You take your health for granted until something goes wrong, but sounds like your on the road to get help.

My conditions are not under control at the moment but there are other medications which can be used to help. Speak to your specialist about your flare ups take pictures to show them and keep a record of things it may help you find a trigger but also show the specialist what your dealing with.

I was given hydroxychloroquine 1 tablet a day at the start they upped it to twice a day when I continued to flare up but they removed it I was gutted as it was the best I had been but I didn't weigh enough to be on that dose. I now gave hydroxychloroquine and methotrexate I'm a bad example because still struggling but they will help you get the right balance!!

Tattoos- be careful I have a few and my last one I thought had gone wrong in some way but our bodies react differently to things with our condition I would seek support from a medical professional about the swelling!

Nothing really happens when your formally diagnosed I've remained under the same specialist and have regular bloods due to the methotrexate, I felt relieved in a way that I could say this is why and it enabled me to approach my employer for support at work. You get classed as being vulnerable and that's about it from my experience

I'm still coming to terms with it all and it is overwhelming but reading posts on here helps a lot communication with people who can sympathise not empathise is great! I have tried to carry on doing everything I have always done there are days when I can't but I accept that it is OK. I do boxing and my main problem areas are my hands but I still go I've just spoken to my coach and he's made adaptions for me, I still put my gloves on I just hit a sponge instead of a bag hehe I still go to the gym I still go out with friends but I get it it's like a little cloud of rain waiting to pour, don't be afraid to say your having a rubbish day those who care will understand and those who don't well that's not your problem

Sorry long reply but sending you love and we can row the same boat hehe xx

[JLAR01 in reply to Sunshine634]

hi sunshine ☀️

Thank you so much for taking the time to read my post and reply.

I can absolutely understand the screaming and crying into the pillow - many times have I done that and you are right it did help!

Thank you for your advise on flare ups. I have been and remain to continue taking pictures of my flares, but still difficult to determine what causes them as I’m still trying to live a ‘normal’ life. I’m pretty sure I’m starting to go through the grieving process of the old me and keep waking up just expecting to feel better - but we all know that isn’t the case. I’ll get there I think, slowly slowly. But I know I need to learn to be kinder to myself, and accept that I’m not going to wake up full of beans like I used to. I’ve started writing a journal every day and each day write down something I am grateful for 🥹

I never knew you had to be a certain weight to take more hydroxychloroquine! But it does reassure me knowing that there are other things they can give me if this doesn’t work - thank you.

I think I’m going to speak to my consultant about tattoos when I see him in march, as I want a tattoo to symbolise my lupus. When I had my back piece done my lymph nodes in my neck swelled so so bad had ultrasounds etc which also helped to get me to push that I have lupus. I’m just scared that should I have another one it’s going to cause me to be so so I’ll. I have spoken to my tattooist who is massively supportive and states that she does tattoo other people with Lupus - so I guess that’s reassuring but just wondered how others with lupus actually got on so I have a little idea of what to expect lol and whether it’s worth it 🥲

Thank you on clarifying what happens once diagnosed. I was pretty sure nothing much really happens but hard to say as everyone is so different. Do they complete regular medication reviews with you? I have reached out to my employer as soon as I was diagnosed with TL and they are aware I am under investigation for SLE but honestly, they’re not massively supportive and they’ve started treating me differently which isn’t nice.

I agree, this is such a help this forum. There’s been so many posts I’ve read that have helped me massively. I’m so happy to hear you’re still doing the things you love, that’s massively important I think. Oh 100% those people that are going to be judgy about me having a bad day don’t deserve to be in my life anyway 😂

Thank you so much, I really appreciate you taking the time to reply and for your support 💜 well get There eventually! X

[Sunshine634 in reply to JLAR01]

Going through the grieving process of losing the old me - this is exactly how I feel at times I've been trying to find the words to explain the feelings but that's exactly it! My partner asked me recently did I want to do the great North run and j burst into tears, old me would have jumped at the chance but current me knows I can only cope with short intervals and yes its a win but recently running is a no go and an hour max of exercise with breaks is best for me I'm pleased with that but that's a great statement thank you xx

Medication reviews- yeah I've been having 3 monthly reviews with my specialist but they have just sent instruction to my GP so I can get my tablets from them rather than the hospital. And I have bloods every 3 months now although I've had some bad flare ups and new symptoms so bloods have been monthly. I've found rheumatology specialists and nurses take you seriously and really listen and worry when you flare but GP's are less sympathetic but maybe because they have less knowledge of it. I hope I don't lose my specialist she's been great!!

[soul22 in reply to Sunshine634]

Hi

Sorry hear all your going through

Been there ,can be alot of anxiety at beginning

Bless you

Right so firstly hydrochlorquine takes quite a while to kick in full dose is 200 mg twice day but a lot rheumatologist won't give that in UK anymore.

So steroids is to cover till it kicks in,if not enough rheumatologist can add azathioprine, methotrexate etc as combination dmad( discease modifying management) treatment.

Don't apologize long post it will be that was to begin with.

Hugs ,boxing very tough on hand arm joints bless you but if can do no excess pain then why not

Mines long journey I've overlap or

Sle & rheumatoid arthritis & fibromyalgia & Raynaud's & clotting problem & osteoarthritis

Started she 17 rheumatoid arthritis many years later butterfly rash while waiting see rheumatologist.

Lupus and mixture of auto immune conditions in my family on my late father's side.

I seemed get most of them unfortunately

Ana is anti nuclear antibodies test

There's others you require two positive so many weeks apart.

Previous advice anyway

Sun block all year round as I react to lights,sun I get solar fatigue skin gets inflamed fast factor 50 I started at factor 30 that helps

Pacing yourself helps fatigue.

Listen to your body meditation is great tool to relax deeply lying down eating high antioxidants foods is great for lupus low GI foods just Google it my rheumatologist nurse studied nutrition advised me this.

So blueberry raspberry cherry broccoli carrots you will get puffy face on the steroids make sure you take with meal in morning or they would keep you awake.

You may feel bit hyper agitated to start it eases.

Hope helps im 52 diagnosis at 34 rheumatoid arthritis diagnosis 17 no organ damage my new hospital checked all my organs.

You will do urine tests probably each rheumatologist appointment it's fast way watch for urine infection and inflammation in kidneys.

As a preventative measure then can treat fast if issues.

Lovely meet you

Fatigue I used traffic 🚦 light system

Laundry red high energy

Cleaning red

Changing bed red

Light dusting amber

Paperwork green

Light trip shop green

You get to see which task affect fastest and how

Don't do two red tasks one day if can help it sit take breaks

It's tip rheumatoid arthritis friends have me works with any condition where fatigue is a problem.

Good sleep water fruit veg all. Help

Ps it's advised don't take high strength vitamins c or zinc or echnicea they cause lupus to become overactive to much stimulation to immune system lupus can go to a bit crazy.

Advice from my rheumatologist

[Florence91 in reply to soul22]

Brilliant reply - would endorse most of it from someone with Lupus SLE diagnosed in 2007 after years of symptoms. I am still taking hydroxy and prednisolone, now 78 and active. There is life with lupus but it's a real struggle esp in the beginning and if you pick.up an infection, when I often need extra medication. I did have methotrexate for years plus another immune suppressant but they stopped some time ago.Wishing you well.

[soul22 in reply to Florence91]

ThanksI'm recovering ovarian Endo cancer two complications require more surgery.

So not allowed methotrexate due to slow healing dehissed wound that had sepsis and repeated infections.

Steroids I can't have much I get shingles every time plus infection sinuses.

So just hydroxychlorquine need more thk u for reply nice to meet you

[Florence91 in reply to soul22]

You're welcome. It is complicated but usually the medics - rheumatologist figure things out eventually & at times it's trial and error because of the other conditions. All the best to you

[soul22 in reply to Florence91]

Yes definitely is,thankyou

[invisibleme]

hello

I was diagnosed with SLE almost a year ago now, so I understand all of your fears and struggles.

Did it have a number next to your ANA blood test? Something like 1:200? There are different levels to it being positive. In the past I have had 1:80, 1:100, this time I was 1:1280 and I am also speckled. I think to have a definitive diagnosis of lupus you also need other blood tests that are positive but as you have had a biopsy that is positive that should help. Although I have read that there is just skin versions of lupus that are not SLE. It’s very confusing 🙈 I have also seen, some people can be diagnosed on symptoms alone, I think it very much depends on the doctor you see. Can I also ask about your white blood cells, are they low? I for example have chronic neutropenia, I know some have leukopenia. If your white blood cells are depleted that is seen as another sign it’s lupus.

I have found hydroxychloroquine to be amazing, it’s given me so much function back, I am on 400 (so two tablets twice a day) I take steroids daily for another condition and will be on them for life (I do not make very much cortisol) but I take hydrocortisone not prednisone. I would only take steroids for as little time as you can.

I had a tattoo in December on the back of my neck, healing took a little longer but I was lucky that I had no problems, I also currently have swollen glands in my neck (not tattoo related) I think it’s just a lupus thing. It’s hard to work out what makes you flare, that I think comes in time. Just seeing what works and what does not.

I have to admit I being awful at remembering to use sunscreen and I detest wearing hats but if I do not I get blisters on my scalp.

I have read staying away from garlic is advised as it activates the immune system. So be careful as someone previously said about what supplements you take etc, because we do not want to bolster our immune systems as it will be more active.

Just be kind to yourself, give yourself time and pay attention to your body. We will get there with care and attention to ourselves and remember sunscreen <<< I need to remember this one 😂😂

[Milkybarkid]

On my 21st birthday (a long time ago) I came out on a rash on both arms and my legs. Eventually it disappeared and a couple of years later I started being asthmatic, which involved a change in job, which felt a bad thing at the time as I was a hairdresser but in the end was the best move I could have done and financially. Fast forward to 1992, I took redundancy because I didn't want to travel more than I was doing at the time, and got a similar job. Suddenly I was having trouble with swollen joints, really tired but I always seemed okay in the morning. Eventually I got so bad at work that I had a blood test, and of course everything was on the floor. My doctor told me it was either one thing or another and I was too young for the 'another'. Steroids followed before I was weaned and then 'Hydroxi' and eventually that went down, currently three tablets a week. I think they have found that a regular dosage keeps it away and so far I have never had a bad experience since and I'm now 77. Everybody is different and I was always told mine was mild. My main annoyance is the brand of Hydroxi issued. Zentiva, perfect as is Black Rock Pharma, any others and I get a rash on my neck, which only goes when I get the 'good' brands'. If you can keep it under control there are a lot worse things to have and you can certainly live a normal life although I do belief stress is not good for you. I remember when I was first diagnosed the doctor had to look the symptoms up, now I know at least five people in my village that have been diagnosed with SLE and there are probably a lot more. Main thing is I only go out in the sun with a high SPF on to avoid any flareups. In the scheme of things, there are a lot worse things to get.

[Lucymay]

Ihave been taking hydroxychloroquine for 15yrs, and it does take sometime to really get going. I have blood taken every 8 weeks but i cant say whay causes you to flare. Rest and try not to get anxious as this will set off lupus, as well as many other things. I gave to keep out of sun light and uv bulbs ect. But not everyone is the same. Have you been put on pain relief and amitriptyline as these help with sleep . I hope some of this will help you. Keep on the site to get loads of help.

[Marlena84]

I am so sorry It is happening to you. You didn't mention your age but I am assuming you are grown up and in women lupus can develop quite early so I don't understand Thai explainetion that you are to young. I was diagnosed 12 years ago with fluid in my lungs, kidney biopsy followed with 8 doses of chemo. But now I am happy and healthy as I can be. Working with children and functioning normally. 1.I was given hydroxy.. For my skin problems specifically, so I am thinking that you need to wait for diagnosis to be given more medication to help with other problems. For me next to hydroxy was high dose of predni. Aspirin as my lupus is one with possibility of blood clots. Plus of course mycophenolate. And that combination put me back to my feet.

2. Can't really help you here

3. Yes. I am on regular blood test from my nephrology and rheumatology clinic plus GP is requesting blood test every couple of months to before repeating my prescription.

4. Listen to your body.. This is what I can say. For me winter and wet months are the worst, plus avoid sun by all costs. But obviously everyone is different so like I said,listen to your body.

5. After my diagnosis I've got myself 12 tattoos sooooo I don't see connection. Lol x

If you need anything else or support or to talk anyone pls don't hesitate to contact me. Good luck.

[JLAR01]

thank you all for your advise 🤍🤍 you’ve all said some really helpful things that I’ll definitely take on board!

[MusicalFurbaby]

Hi JLAR, thanks for your post and for asking these questions! Sorry you’ve been having a hard time with it, it’s all so overwhelming sometimes and it can be hard to imagine what life with lupus looks like.

I take Plaquenil but we had to change my dose, so it took probably 4 months for me to feel the full effects. So if it’s been less than 1-2 months, hang in there! If you don’t notice any benefits, it’s important to tell your rheumy so they can either adjust the dose or try something different.

Life with lupus looks different for everybody, so it’s hard to say what to expect. Regular bloods do seem commonplace, at least for the first few years, and certianly when you’re flaring. Which brings me to your next question! Defining a flare can be more complex than it sounds, because every flare can be different, making them elusive and misleading. Sometimes, for me, a flare looks like a bit more pain than usual, or more mentally ‘spacey’ ie. brain foggy, or more fatigued at work. It can also look like new symptoms, or symptoms that are bad enough to warrant strong painkillers or a doctor/hospital visit. Tricky, isn’t it?

Often, my lowkey flares last a few days, so if things seem to improve after a few days I put it down to a flare. Severe flares are far easier to spot. Can’t breathe for six months? Flare! It will take a while for you to learn your own body and style of flares, so try to be patient with it and pace yourself. Lots of self-care during this time!