New to lupus : Hi all I was diagnosed with lupus... - LUPUS UK

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MK83 profile image
MK83

Hi all

I was diagnosed with lupus and lupus N 4 weeks ago so its hard to get my head around it so much fear and anxiety of whats going to happen and whats going to be. Question my self all the time to what my life is going to be like i feel like its going to be ruined by this condition (i dnt like to call it a diease) i have been googling quite a bit and there is so many horror stories my anxiety get crazy. This is the only place where i havent seen horror stories.

My bloods come back really good after 2 weeks of being discharged from hospital. I sometimes feel when i wake up i have a spring in my step then take meds and feel meh.

Im on sted and mycrophenlate atm. Is anyone else on mycrophenlate does it really take 8-12 weeks to kick in?

How long did it take for anyone to get in to remisson?

Has anyones lupus been dormant?

66 Replies

Hi,welcome to the forum.The first thing you need to do is stop googling,there’s loads of information available on the net,but it’s not always reliable.

I stick to Lupus UK And NHS website.thet are more reliable and Not as sensational.

I also look at British Lung Forum as. I also havealing Disease.

You mention being discharged from hospital, I was diagnosed after an emergency admission. It was a shock.

Ihad the lung disease diagnosis first,then after referral to rheumatology,I was diagnosed with the auto immune disease.

Myclophenate took over 4 months to kick in, I take mt steroids with breakfast,as early as possible.

I also take the Myclophenate with food as I find it suits me better that way,otherwise it upsets my stomach.

If you have any more questions,please post on this forum.

There are many people on here who will support you.take care.

MK83 profile image
MK83 in reply to Oshgosh

Hi

Thanks for the responce. Yes we had to call 999 as i couldnt walk or move my skin was pale and so weak and had chest pains. I stayed for 2 weeks until my kidneys stopped leaking protein. Was diagnosed within 1 week.

Im slowly being weaned off steriods been on 45 4 weeks ago to 20 now.

Its nice to see postive people on here and no negative. Exactly what i needed.

Thank you so much. Its going to be a journey i now scared nervous and anxious x

Oshgosh profile image
Oshgosh in reply to MK83

You are on a journey,but there are many people who-have experienced fear and uncertainty around their illness and diagnosis You will get the facts on the forum not sensational headlines.

MK83 profile image
MK83 in reply to Oshgosh

Thank you

Oshgosh profile image
Oshgosh in reply to MK83

Remember o question is too stupid to ask.Sometimes I’ve has symptoms which seemed not to make any ridiculous. Many answers came from the forum,which helped me through bad times.

Take care

MK83 profile image
MK83 in reply to Oshgosh

Yes ...will comment on here with my questions. Trying not to blame everything on lupus at the moment which i do ha

Hi.i have lupus and class v lupus nephritis.ive been on mycophenolate for 18 months now and yes it takes at least 8 weeks to start to work and 6 months for full effect.i also take steroids and hydroxchloroquine. It was initially thought it would take 4 years to put me into remission.Google the spoon theory. Asking on here you will get honest info ..it may still seem scary but its from people who have experienced it and got through it......weve all been where you are now.you will learn your boundries and coping strategies as you go along. Pace yourself, sleep and eat well.if you are prepared to compromise and adjust it is possible to get along with lupus.best wishes xx

MK83 profile image
MK83 in reply to Spanielmadlady

Hi

I have already started my healthy eating etc.

Are you in remisson or ever experienced it?

Im trying to be optemistic but anxiety gets the best of me. I got this

😀

Spanielmadlady profile image
Spanielmadlady in reply to MK83

Did you have a kidney biopsy and which class do you have ? My kidneys have been stable for sometime now.my kidney specialist was happy at my last check up in april.watch your potassium and salt intake ditch the carbonated drink and alcohol.ive not experienced remission as yet.my lupus ran riot for 5 years before diagnosis so caused alot of issues and inflammation that have taken some time to settle.im not quite sure how they determine remission 🤔 to me I'd of thought it was if the lupus stayed dormant once medication is stopped but dont quote me lol.my bloods are now negative.over thinking doesnt help and doesnt change any outcome so try to relax and go with the flow.lupus is always throwing something new at us.ive just had episcleritis (inflammation of the eyeball) with you guess it...a link to lupus and sjorgens which I also have.stress is one of biggest triggers so you've got to keep to an absolute minimum . Keep smiling xxxx

MK83 profile image
MK83 in reply to Spanielmadlady

I did ive gor class iii. I dont get these classes so assuming its moderate. Everyone tells u different. Some people at the hospital say i have servere lupus some say moderate and some mild. 🤷🏽‍♀️

In hospital i had servere chest infection. Suspected tb in bowls, was really anemic and my liver was inflamed all which have settled now.

I have a colonospathy this weekend to check for tb not looking forward to it at alll.

Ive ditched the alcohol for now. Sad times. Maybr one day i can enjoy a glass or 2

If your bloods are negative dont that mean your in remisson? Its so confusing i tell ya

I have eye issue i got white clouds in the back of my eyes inflamation but there monitoring it and given me glasses.

Oh how life has changed. I hope i dnt develop anything new from this. Lupus give me a break pleaseeeee

Spanielmadlady profile image
Spanielmadlady in reply to MK83

There are 6 classes of LN and the classes denotes which part of the kidney is affected.class 4 is the worst. I have class v which is the membranes of the kidney.i dont drink as it just makes me feel sick which I think is partly due to meds.

My bloods were negative before staring immunosuppressants but I've been on steroids for many years to calm the inflammation. Now it's up to the immunosuppressants to take over the job of calming my immune system.

Many other illnesses overlap and are linked so if you have 1 AI illness you are most likely to develop more.i now have 5 in total ...lupus rarely gives us a break as there are the add ons like photosensitivty. 🙄 x

MK83 profile image
MK83 in reply to Spanielmadlady

I had protien leaking out not sure which part that.. unless i was told cant remember much from hospital as it was all a blur.

Oh great so im expecting more illnesses this is what i dnt like not knowing. But ok hopefully its not serious i cant cope with another diagnose. Meh

Never gona be meds free am i....:-(

Xx

Spanielmadlady profile image
Spanielmadlady in reply to MK83

The body produces antibodies which the kidneys clear out of the bloodstream when there are too many they get deposited in the kidneys causing damage. Where they are deposited denotes the class and extent of damage .You may not get anything else but thyroid issues,b12 deficiency anaemia, sjorgens, RA,fibro to name but a few are also AI illness that tend to go hand in hand with lupus.

I dont know whether you will be meds free in the future but there is help available for many of our symptoms which allow us to function and have a better quality of life.also meds for lupus are also about preservation . ....lupus affects organs with connective tissue...the heart,lungs,kidneys and brain so meds are also about protecting and preserving organs for the future.

Slap on the factor 50 sun cream and lip balm,wear a hat and sunglasses,cover up head to toe (all year) and stay out of the sun as much as possible 😎 xx

MK83 profile image
MK83 in reply to Spanielmadlady

Im anemic and got b12 dif so far lol

Whatttt so that means no holidays ??? Dressing head to toe on holidays deary me

So much info to learn its crazy.

Spanielmadlady profile image
Spanielmadlady in reply to MK83

Travel insurance is affected by kidney disease.if I'm out in the sun without covering up i suffer with joints flaring and I get a bad head after about 3 days indoors it goes.lightbulbs are a culprit too as they also give off uv radiation.a high percent of lupies have photosensitivty and some drugs we need cause it too .I've got b12 deficiency and have injections every 8 weeks.i also have thyroid and sjorgens which affects moist areas like eyes and mouth .

Maxi dresses,wide brimmed hat and sunglasses...you'll look amazing x

MK83 profile image
MK83 in reply to Spanielmadlady

Oh god. .this is great.

Is there s certain temp or is it just normal sunny days in uk??

Il have to maybe not do hair removal laser then to be on the safe side

Spanielmadlady profile image
Spanielmadlady in reply to MK83

Normal uk weather factor 50 all year.its uv levels rather then temp but hot spells are the worst thankfully we dont get many where I am.i know some on here cant go out until after dusk so my photosensitivty is minor by comparison .headscarves are great when it's too windy for a hat .dont have that issue as I no longer have armpit or leg hair ..its just disappeared 🤷‍♀️ xxx

MK83 profile image
MK83 in reply to Spanielmadlady

Thats so strange is that because of lupus or just?

Spanielmadlady profile image
Spanielmadlady in reply to MK83

Hair loss can come with lupus and I've been asked by rheumatology in the past but just thought of my head in which case no...... other areas didnt dawn me 🤦‍♀️.You can still do things with lupus...just in a different way xxx

MK83 profile image
MK83 in reply to Spanielmadlady

Ohhh i would love for ny body hairs to fall off but unfortunalty its my head and eyebrows.

Oh well it will come back.

HiI was diagnosed in 1992 with lupus and Sjögren’s syndrome. I went through the same feelings as you are. As previously said, stick to reading info from lupus uk and nhs. This is a very supportive forum😊

MK83 profile image
MK83 in reply to Josiah150767

Thank you x

We’ve got you cocker, I’m new to this and did exactly the same as you, I was one neurotic nutcase and then I found this place. It’s a wealth of knowledge without a doubt, but everyone’s warm, friendly and they understand, they even made me sit back and laugh at some of this shit! Welcome to your new disfunctioning family x

Haha love that...never been in a disfunctioning family before.

You all seem so relaxed about it. Its so nice and makes me feel better.

Thank you so much.xx

Don’t get me wrong I have my moments, I’m more like a swan, graceful on the water surface but my legs are going like buggery! Xx

Just wanted to ask does hair falling out ever stop?

pattypatchwork profile image
pattypatchwork in reply to MK83

Hi, I lost a lot of hair last year, there was that much each time I washed my hair that I had to clear the plug hole at least 3 times just to get the water down it . It's seems to have stopped now thankfully.

MK83 profile image
MK83 in reply to pattypatchwork

Yeah im the same loosing it its quite brittle and breaks ive choped it really short now. So i hope it stops soon 🙏

I had such beautiful well maintaned boack long thick hair 😣

Smudge4465 profile image
Smudge4465 in reply to MK83

Hi, I’m going to jump in here! First of all welcome! Welcome! Welcome! I was admitted by blue light. Was an inpatient for many weeks in ITU, Burns unit, then recovery ward. I have the rare lupus Bullus. 3 years later after much recovery I’m feeling the best I have felt in 10 years. Honestly!!!! I was originally diagnosed with fibromyalgia but then several years later blue lighted and that’s what made the diagnosis. My point is, I cried when they told me I had lupus. It can at times be a challenging journey but it’s about the support of everyone that is around you that will help you get through. Yr consultants, your hospital, and those who love you. We as a forum are also here. We have the experience. Happy to help anytimeTry to be calm, and best wishes. Hope that helps.

MK83 profile image
MK83 in reply to Smudge4465

Hii

Wow thats along time. Sometimes i think to myself they diagnosed me quick 2 weeks. My symptoms started in feb. I cant wait to feel my best i hope its sometimes soon.

I want the old me back happy confident socialble and always laughing. I suppose i can be like its my own attitude towards it.

Xx

Smudge4465 profile image
Smudge4465 in reply to MK83

From yr comments I would think you are in a good area for hospital support. You will find on this forum that many of those with lupus have been through a journey of 5 years plus. Lupus is complex and each individual person is unique with its symptoms. If you are blue lighted, which no one wants of course, the issue has to be dealt with

and our lupus centres of excellence are very good at that in my experience.

Check that yr hospital is a centre of excellence for lupus maybe? Lupus Uk will be able to confirm.

MK83 profile image
MK83 in reply to Smudge4465

Im at QE they have been amazing. I have a healthcare provider so whenever i have something going o or experiencing something different i just call her.

I have noticed that its taken people a long time to be diagnosed and thats were the organs are effected more when no treatment is given.

The renal department is where i have my apps and they were suprised within 4 weeks my bloods were back to normal with treatment but thats just me reaponding to the meds well im guessing.

Xx

Smudge4465 profile image
Smudge4465 in reply to MK83

Funny you shud say the QE. That’s my second home!!

Best to chat one to one maybe?

MK83 profile image
MK83 in reply to Smudge4465

Yes that would be great :-)

Hi and welcome to the group x

MK83 profile image
MK83 in reply to svfarmer

Hi thank you :)

Hello, you’ll find this forum supportive and very informative. I endorse other replies about stress and taking care of yourself in every way to minimise the impact of the disease. I have Stills Disease not Lupus but take each day on its own. When I wake up I assess the worst feelings of that day and simply live accordingly - it helps a lot. Have a good day 😉

MK83 profile image
MK83 in reply to stillsdisease

Hii

This is the kinda attitude i want to develop. Im new so maybe i need to give it time and it will come to me

stillsdisease profile image
stillsdisease in reply to MK83

Take your time and settle in to it so to speak. I don’t know your age but it’s a whole new way of living to embrace and really helps you deal with everything, although there are bound to be crying days but that’s fine and an equally good coping mechanism 😀

MK83 profile image
MK83 in reply to stillsdisease

Im 35 still got my whole life ahead of me always question myself why me.

Im glad i found this page. Was reluctant to come on here because all the bad stories but this has made me realise i still csn live my life but with a new best friend lol

YES YES YES YOU CAN 😁

MK83 profile image
MK83 in reply to stillsdisease

:-)

Hi you sound like me ........ I’m still the same now 12 years in ! DO NOT GOOGLE!! In those years Ive had x2 flare ups which were bad but definitely manageable with the same medication has yourself . I’m very new to this forum in fact just a week - flare up as happened. With me because we are all different I found I was on tablets for quite a while steroids are decreased but mycrophenlate for approx 18 months BUT I went 4 years in remission until now 😑 😞 The best advice I can give you is be patient..... I wasn’t but I’ve learnt how to Adopt healthy living and eating and do things in moderation . Believe it will get better cause it will cut out all processed snd salty foods I still have a drink but in moderation BUT we are all different. Over the years my consultant has been fantastic and I’ve done what he’s said with brilliant outcomes. I’m hoping things will get better for me too x

MK83 profile image
MK83 in reply to 445600

Haha when i was 1st diagnosed that all i did 5 times over i wpuld read the same article. So in remisson do you feel your normal self again how u felt before lupus??

I do enjoy i drink but im off it for now. I love a good take away but staying away from all the junk and healthy and hoping for a remisson. One main job is to try not stress so much.

This post has given me hope thank you so much xx

445600 profile image
445600 in reply to MK83

I’m not gonna lie to you I’m not the same person BUT WAIT b4 lupus I was working 55-60 hours pw and I travelled the country north to south. I had a very stressful demanding job. So I changed jobs a much better work lifestyle balance and all is good . I hate exercise but I’ve just completed NHS C25K but I’ve been advised not to exhaust myself because I’ve relapsed. Hopefully by weekend I can get on my medication and things will improve I have to wait because of my COVID jab. Normally I do have a drink at weekends and have the odd takeaway and I go on holiday to sunnier climates but we are all different. You will be better but it will take time . I have had quite a number of years medication free living a new normal life it can be done . Keep in touch good luck on your journey! X

MK83 profile image
MK83 in reply to 445600

Ahh thank you. Glad your meds free thats my aim and goals.

Ahh thats amazing hope you enjoyed iy but booo with the relapse.

I can do this. Give me a year and il be the same as you (wishful thinking) i need a holiday. This rain is depressing

Enjoy your evening :-)

Ignore all the horror stories about lupus and put trust in people who are qualified to deal with you, as they will talk y through your particular circumstances and discuss the plan to help you. By doing this y will in time become calmer about having lupus. Lupus doesn't define who you are and don't let it stop you living. I have severe lupus and gone through some challenges but It's important to listen to the qualified drs.

MK83 profile image
MK83 in reply to Philosophy1

Thank you

I need to learn this. When being diagnosed 1st thing i asked is am i going to die or be in a wheelchair the rest of my life he laughed at me and said no my dear we have very good treatments you will have a normal life. This was all horrow stories i read to had that pic in my head lol

Philosophy1 profile image
Philosophy1 in reply to MK83

There is never a silly question. There are treatments for lupus. As I said I have severe lupus and with treatment I have returned to living a normal life with check ups and treatment. Put trust in drs eg rheumatology drs and most importantly focus on what they tell you your particular situation is and plan for treatment and follow advice given. I too reacted like y when I was first told I had lupus but it's important to know that so much can be done to help you. Stay positive and don't listen to scare stories as it won't help the lupus or your anxiety.

MK83 profile image
MK83 in reply to Philosophy1

Your right. I can do this.

Thank you for taking time to reply to me :-)

Your welcome. Take care and remember things will get better even if it doesn't seem so right now. Take one day at a time

A point I missed was focus on what you can do not what you can t do. This is probably the most important lesson that I learned through the challenges, albeit it is so logical. E ven if it is something small, because by doing so, you focus on trying to be positive instead of feeling desperation about the current situation and how it is impacting you. Take care

MK83 profile image
MK83 in reply to Philosophy1

This is very good advice.

Thank you

Hi there and welcome Just wanted to comment to hopefully give you some reassurance. I was diagnosed with SLE 41 years ago and have been on steroids together with combinations of other meds throughout that time. Back when I was diagnosed obvs there was no internet info and very few people had heard of lupus. Initially the outlook looked very bleak, but I was a child and refused to be limited and I suppose just had to get on with it. To me now I don’t really know a life without lupus. What I would say is listen to your specialists advice, but also learn to listen to your own body. You will learn to know if somethings not quite right often before any symptoms appear. Don’t ever think you’re being a nuisance, if you feel you need help ask, and always advise your specialist of any symptoms, even if you think they are unrelated. Everyone with lupus is different, I was told no sun and stuck to this for many years, but then gradually introduced my skin to sun, now years later I am able to tolerate sun with factor 30, but again I have to be careful and read the signs. Sorry I’ve gone on a bit here, but basically want to say that I’ve obviously had my flares and hospital stays over the years and good days and bad days, but generally I’ve managed to live a fairly normal life and it hasn’t held me back. Please feel free to ask any questions at all, as I say everyone is different and has different degrees of symptoms. Learn what you can and can’t do, push yourself, but learn when to take it easy, and keep smiling:) Hopes this helps!

MK83 profile image
MK83 in reply to LTLL

Hello

Thats so reassuring that youve lived your life. I worry what if no one marrys me, what if i have kids etc. There is so many what ifs, but i guess il learn along the way.

My doctor said im being to impatient and its only been 4 weeks but thats me soooo impatient and expect miracles lol

Thank you so much for reassurance. Coming on this group has made me think differently.

Thank you

LTLL profile image
LTLL in reply to MK83

Ah bless you, well I have a wonderful understanding husband and have always had full time jobs. I’ve not had kids (just step-kids), and I’m sure you already know that can have it’s difficulties but many lupus patients do. Nothing wrong with being impatient- it’s better than putting your head in the sand! Lol Keep that determination to live your life as you want to.

MK83 profile image
MK83 in reply to LTLL

Thank you so much for the support 😀

LTLL profile image
LTLL in reply to MK83

No problem, this site is great I only joined a few weeks ago and never spoken about lupus to anyone outside my family before, so this is new to me to, but everyone is so friendly and supportive :)

MK83 profile image
MK83 in reply to LTLL

Yes had a very warm welcome 😀

Welcome MKA31.

I empathise with you. You are not alone! I too was recently diagnosed. Please try not to be scared. From what I have read most people live for the same time as the average Joe the hard part is managing it.

My nurse has pointed out to me that I need to plan what I'm doing more. For example if I want to go for a walk them ensure you rest for an hour upon return. This is very alien to me as I used to be go, go, go all the time! And I enjoyed lots of outdoor exercise. She said if you plan your day well with rest inbetween then the flares won't wipe you out completley. So I am trialing this.

It may help you if you try not to google. Personally, I stick to speaking to my rheumatology team at the hospital if I have any concerns or questions. I do use the NHS lupus site. I have also joined LUPUS UK and just ordered the encyclopedia for Lupus patients and their families. If you quote the code on the Lupus site you get a 30 per cent discount. The paperback works out to be £21.91 After discount and including postage. I am waiting for it to arrive.

The main thing is to remain positive (easy to say I hear you reply). When I feel a bit fed up I remember there are many people worse off than me from young to old. You will have good days and not so good days, try to take each day as it comes there is no pattern to it.

Please feel free to contact me. And remember your warrior cape is firmly attached even if you can't see it!

Take care.

💪🕊

MK83 profile image
MK83 in reply to PositiveT

Hi

I do feel fed up especially on days like this. Nothing to do. It sadens me that im always go go go and never had to plan. I hate planning. Its gona be different meh. I was so energetic and gym goer etc

My mum says the same there are people who are alot morw worse off. Your lucky to be here which is true.

Mehh hopefully over time i will accept it. I hope i do.

Thanks

PositiveT profile image
PositiveT in reply to MK83

Hi ya, of course you feel fed up. We are only human! And remember it is YOUR pain and YOUR feelings so sometimes even the most positive person has a blip. I get you like to be spontaneous we all do at times. I have found it does really help though. I decide before bed what I'd like to do the next day and then think what CAN I do. For example today I put washing on the line (really hurts my shoulders), then I went for a walk (had to stop several times), rested at lunch for an hour (feet up on the sofa), then I went to the tip ( had to leave myself plenty of time to get stuff in car) and finally I rewarded myself for all the little jobs by sitting on the sofa. I feel proud of my achievements. The tasks do not have to be big. Little things will boost your mood! I get outside every day to cheer me up. Even if it's sitting in the garden. Allow yourself to do nothing. This is something I am still getting to grips with! But it has improved my morale and in turn helped my family too. I used to run so to make me feel better I wear my running clothes but walk instead.

Don't beat yourself up! It's early days and each day can be so different. You are an amazing human being never forget that!

I am here for you. Go and make yourself a hot drink and have a biscuit!

😘🌻

MK83 profile image
MK83 in reply to PositiveT

Ive started doing more now like house work etc to i washed up for thr 1st time since march today lol more days go on the more stronger my body gets which is good. Ive introduced weights now. Just need to build the confidence to go for my walks again out the house by myself. The joys

I cant drive yet until i get glasses. I have cotton wool bits at the back of my eyes so my eyes are so dry and blurry. But they say itl settle down be patient.

I feel like that they say that alot "itl get bettet dont worry" lets just hope hey

Im going to have my covid jabs and then get back out there craving a good laugh with my friends in a nice resturant.

Yes that's the spirit! You go! A meal with friends will lift your spirits. You've got this. I can see your cape is firmly fixed. Sorry to hear you have to get glasses for your eyes. I wear glasses for distance and have noticed a change since the Spring. I only had them checked in September. Hey ho that's life. They have told me to hold off having the second jab just in case it makes me ill again. Just have to carry on being careful. I am avoiding shops but have been to a tea room outside with a friend. Not sure I feel brave enough for indoors yet. Chat again soon! 😀

MK83 profile image
MK83 in reply to PositiveT

Yes mine is for distance aswell i can read close up

Yes i got this thank you so much for your time.

Speak soon xx

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