Lupus very demanding

Hello all

Lupus is causing a major issue in my family. My mum was scheduled to have a colonoscopy appointment in Manchester and I was meant to drive her there. Unfortunately I woke up with a headache, I thought it was my glasses so I put on my contact lenses.

I wasn't feeling too good but I thought I could manage. By lunchtime I got home took my medication & told my mum i was going upstairs to lay down abit b4 going to pick my son from school . I wanted my mum to rest while she prepares herself for the procedure. I set my alarm for 2.30. My headache was getting worse I felt sick. When my alarm rang, I got up used the toilet, I tried to see if I could go pick my son up. I was in agony and knew I can't drive in that state. I had to call my mum to get him.

My situation got worse so we realised that I can't drive her to her appointment and I can't be left on my own. So she called the clinic and canceled the appointment.

My mum and son has sacrificed a lot due to my illness. it is sad that one cannot predict what will happen in the next minutes. It not only affects life but it affects the life of those around me.

Is it possible that being off steroid for a couple of days can cause a flareup? I ran out of my steroids 4 2day and all hell was let loose. I am bit worried I may have a chest infection, bcos my coughing is bad but my dentist gave me some antibiotics bcos I also have a gum infection. Hopefully this will clear the cough too. Take care and God bless



39 Replies

  • Hi Ike, it could be that you already had inflammation, the non steroid intake & the stress/anxiety of your mum having a colonoscopy could be contributing to your current symptoms.

    As someone who lives with Lupus SLE & 9 other health conditions, I keep a diary of symptoms, when/lifestyle changes that may trigger them & look for similar patterns as this many be the cause. It's important to try & take meds as same time everyday as the body gets used to the pattern & you know how the body is affected by meds at those times, any unusual/missing intakes will affect your body if its starting to flare.

    Also taking addition temporary meds, eg. Antibiotics will affect the way you function. In the U.K. (Hopefully in every region) there is a NHS short part-time course "Expert Patients Programme" for those living with long term health conditions, how to manage them thru. analysis, diet, lifestyle & exercise).

    Think you need to understand how Lupus affects your daily life so you can adapt. Glad you shared this on our forum as we, who live with Lupus or others, all have to go thru this.

    Last yr, I had a Colonscopy & although not the most inspiring procedure (esp. not without Anaethstic), having a camera tube stuck thru my anus to view my colon on screen wasn't traumatising, esp being as I'm used to things coming out - not going in. Plenty of lubrication works wonders. Results were negative. Hope they are for your mum too.

    Wishing you a speedy recovery x

  • Thanks alot

  • Seems like everything is traumatizing to me. My doctors told me I can't go off the steroids cold turkey that he can bring on some sort of heart palpitations or something so it's real important to be weaned down step-by-step so please don't ever let your steroids run out and I've noticed over the years of reading this forum the UK people have a lot of ways of a better information and better rheumatology believe it or not, than the us.

    Forgive The typing errors I'm using voice dictation as my hands of gotten too swollen to do much.

    I'm not even a candidate for the new drug benalysta because of a past liver problems. So I feel your pain literally every night when I say my prayers I pray for all of you on this board

  • Dirh. I meant ad about the main point, of your post. My family does seem to suffer the most consequences any trauma emotional from moving her from people being mean in my head real or imagined can set me off on the spiral

    And I turn into the biggest crybaby. They live in another state so they don't see me physically disintegrating they just think I'm Looney Tunes but I seriously have begun to think that all my mental issues maybe part of the lupus.

    I was sexually harassed assaulted by some old geezer a few weeks ago and for some reason it triggered something about my past and I became suicidal and then heading towards a nervous break down and I needed a psychiatric care

    Which is now interfered with my Christmas plans but I have to take care of myself first and this is ridiculous I'm tired of this stupid disease!!!

    You are very blessed to have a family that understands you

  • Hi Cctexan3, you've been going thru a lot. Be kind to yourself. Last yr, I was so Anaemic I stayed at home alone cos I was so weak & fatigued. I ate some tasty food & drink, relaxed, watched TV & gave thanks to the Almighty that I'd made it another yr. it was very enlightening but I wouldn't do it every year. Do what you can when you can & be kind to yourself. God bless you!

  • Thanks. I decided to do just that.

    Actually I had a psychosis event again and psych put me on different meds. So I'm no fun right now

    Turns out two of my meds interact with each other. And the pharmacist is the one who caught it , three weeks later so I am in a bundle of joy. I just wish my family would understand .my daughter and I had a little tiff about it last night.

    Thank god for my husband who doesn't judge. I'm trying to get surgery for neck and back... and had postponed it til husband was off bc the psych meds are so heavyweight

    Merry Christmas yall

  • My dear sorry you're going through all this. Try and get the help u need b4 Xmas bcos it won't be much of a Xmas celebration if ur unwell. I also think I am stressed bcos of Christmas trying to make it near perfect for my mum and son. some sort of saying thank you to them for enduring with me this year. My dear we can only do what our health let's us do. Crying is OK it helps let out the steam but please get professional help asap. take care & God bless .

  • The last message from me was about last yr.

    This yr has been challenging in different ways as went thru Cancer with 2 loved ones at same time & lost dad (Liver) & best friend (Breast).

    I'm a Cancer survivor as well as living with 10 health conditions so it's taught me that life is short & to find joy in the simplicities of life. Luckily my health hasn't been too unstable, although there were dys I thought I was losing my mind (from stress).

    Hope my immune system is getting stronger & praying I can enjoy Xmas with my fam for the 1st time in 6years without Lupus being active. Either way I'll give thanks by the grace of God, I've made it another yr X

  • In all things give thanks my dear. On my 30th birthday, I didn't want a force but that morning my mum decided to invite one more family. My mum did the catering. I found myself just looking at my guests and d children running around. All I could think of was how greatfull I am to be here with friends and family. Since lupus I just learnt that little things are all it takes to be happy. like being able to walk unaided, hold my sons hand, drive him to school, cuddle him in the morning. I cherish those insignificant things bcos more than half of the year am in hospital.

    I pray this Xmas brings happy tidings for you and your family . Let give HIM(God) thanks for He is all in all.

    Have a blessed Xmas shopping.

  • Oh that's happy news about your remissions!!

    I pray everyday for you guys

  • I am not on remission yet but I like to take advantage of my good days, when I get them.

  • So sorry youhave had this bad experience, Keep strong, Dont give

  • Thank you

  • Thank u for prayers. I am on the benalysta treatment, have my infusion on Monday. horrible the pain we put up with.

  • Hi Ijeaslike

    Sorry to read your having such a tough time with your lupus. I'm sorry to say it but mags is right. You mustn't run out of steroids as you can't miss a dose it can affect us. Saying that you were probably flaring anyway because of all the stress. It's horrid when you want to give back to a loved one and lupus gets in the way!. I'm sure your mum's colonoscopy appt can be re scheduled and if really needed you can phone patient transport to book a driver or is there a friend who could take her or pick your son up for you?. I hope your better soon , you've had a rough year this year. X

  • She has reschedule for next month hopefully it will be in Bolton not Manchester. I don't have friends, my best mate is in the US, I have parents 4rm my sons school that I chat with. I also feel insecure talking about my illness or asking 4 help bcos of my illness. I am not ok at all . I tried to put the Xmas decoration today. very slowly too slowly cos I had no energy. I feel so low am so sorry .

  • Hi Ijeaslike

    You've had a rough year with your health no wonder you feel so low and you must be worried about your Mum as well. Here's the number to ring for patient transport in case you might need it. 0345 155 1009 it's open from 7am -6pm mon- fri. Glad your mums appt is now at a hospital nearer to you and not too long an extra wait. I'm sure in an emergency you could ask another parent to pick up your son!. I find it very hard to ask for help but have had to start learning recently and it does take a weight off sometimes!. Maybe it could be a New Years Resolution for you. You do it to a degree on here so wouldn't be that hard in practice!. This time of year is an added stress as well when we're not well it's harder to cope with!. I do hope you feel better soon. The 20 mg steroid should kick in soon, how long have you taken that dose?. X

  • Hi ije, there are still plenty of days til Xmas so pls don't stress yourself or panic. I used to be able to do 20things at same time, all in one dy. Now I just put my health/symptoms 1st (as have to) & have to prioritise everything else. If you do a bit of Xmas decorating bit by bit, eventually you'll be finished by Xmas & if not it doesn't really matter. Hope someone will help you.

    Do you have a local Lupus Support Group, you can join? If you contact Lupus UK, they can help you find one.

    Be kind to yourself & accept your limitations (for now) rather than stress yourself out.

    Xmas decorations are lovely (esp for kids) but the real spirit of Xmas is the season of goodwill, love, kindness, thankfulnesss for life, etc.

    Hope you get the support you need x

  • Someone pointed out recently that in refusing to ask for or accept assistance from others, you are also taking away/rejecting their opportunity to help. Not everyone is up for it - but there are lots of lovely people who do want to help others. They may even have noticed - but feel too shy to offer in case you are offended.

    As misty says - you and your mum are as entitled to Patient Transport as anyone else. It isn't the most comfortable sometimes but it picks you up and brings you home, even if you may have to wait around a bit. YOu do have to ask in advance of course - but it does then take away the stress of worrying if you will be well enough to do it.

  • Yeah I totally 4got that. normally use have to arrange it 48hrs b4 hand. I wasn't aware that I will breakdown. I was resting all week thinking I was conserving energy to be able to make it on that day . but it just didn't work out. next time I willhave a plan B.

  • You don't say what dose of pred you are on - but you must NEVER stop taking it suddenly as when you are taking pred your body stops making its own natural corticosteroid which is essential for your body to work properly, particularly in stressful situations. That is the reason you are told to taper the dose slowly if you have to stop taking it, it is so your body starts to get back to normal on a "staged return to work" if you like. So it is perfectly possible it was the lack of pred alone that made you feel so ill.

    If you run out of pred you can always get an emergency supply from the chemist - ask to speak to the pharmacist not the counter staff and explain what has happened. They will give you enough to tide you over until you can get a new prescription. The same applies if you ever lose your pred tablets. If all else fails, call 111 and ask for an appointment with an OOH doctor or even go to A&E. It really can be that urgent.

  • I am on 20mg. I will never make that mistake again. How do I cub the eating am so worried of Pilling the weight. I try soft exercise in the morning and swim once a week. That what I can handle at the moment . I am very low at the moment. thank you .

  • No - that is a lot of pred to just "do without"! No wonder you felt awful - your body was having a real attack of "steroid withdrawal" into the bargain.

    Cutting carbs drastically has helped many on my "home forum" avoid too much weight gain and I lost 36 lbs by cutting carbs. It also helps reduce the craving you get for food.

    There is a thread on here somewhere from ladies from this forum who are losing weight using the Slimming World diet - they are doing amazingly!

  • I will check that. I have stopped cards but I occasionally have a sandwich and I just took a new liking to pasta and cheese bake (is that bad).


    If you use the search lupus UK box at the top right and search "weight loss slimming world" there area load of old threads telling people's experiences.

    How much carb someone can eat varies - if I eat more than just salads and above-ground veggies I either don't lose weight or even gain. But other people can eat some. Whatever your diet - if you gain weight it isn't working for you!

  • I can just read the comments. I am scared of giving updates of my weight. I feel I will jinx it. I know am paranoid but I can't help myself.

  • No-one wants to know your details if you don't want to say - it's how you feel that counts! But people will encourage you - and it is cheaper than a slimming club!

  • Thanks

  • Like a few have mentioned you shouldn't blame yourself, not easy coping with lupus. Is there nobody else who could have taken your mum to the appointment, or maybe a taxi which I have to use going to our hospital as no parking spaces. Stress only makes matters worse so cut yourself a break, and we have all been there. Have a good Christmas.

  • I just wanted to be with her after the procedure. Her appointment letter said she should come with someone . Next time we will call a taxi.

    Thank you and merry Christmas

  • Yh to have anaesthesia, your mum will need someone with her during procedure & after for 24hrs to make sure she recovers ok.

  • It's quite unusual to have a full anaesthetic in the UK - but you are often sedated. Here in Italy we don't even get sedation - it's fine. I went alone although I didn't drive - my husband dropped me off and I called him when I was finished.

  • Sedation/anaesthetic drugs are similar. Not sure which as I was told this by the medical pro's just before they started the procedure which is why I didn't have it as I hadn't planned for anyone to stay with me overnight.

  • You can be sedated but conscious, anaesthetic means you are out for the entire procedure.

  • Yh well, my point was that her mum will need someone to stay with her to receive the sedative anaesthetic drug. I'm going by UK procedures/policy.

  • Its frustrating when we can't accomplish what we are needing to take care of. I understand, my hubby has had to help me the significantly the past three years, even having to get doctors sign papers, that was hard to accept.

    I have RA, psoriatic arthritis, and diagnosed a few months ago with sjorgens and lupus after sepsis and major lupus Rash. I'm learning like you its a battle. I went shopping today, the first time in months, I'll have to rest. Please rest when you need it!

    I am also experiencing a sinus, mouth ulcer in sinus so have had to be on two antibiotics. Not looking forward to the thrush coming soon, maybe it won't come this time. I feel for you and my prayers are with you and your mother.



  • Thank you

  • I'm really curious about this because I read that you should not be on steroids, unless your doctor deems it ABSOLUTELY necessary? If put on them, it should not be for an extended period of time. Have you tried any other meds that just did not work? I was first put on Methotrexate (both pills and injections) without much success 😞 I'm now on Plaquenil and have seen improvement. Hope you get well!

  • I am on all of them. steroids works quicker especially during flareup. I have been on plaquinel, am on methotrexate but on hold at the moment bcos am neutropenic. My dr promised to take me off steroid when am stable enough . They intend to resume methotrexate plus belimumab which am on now. My issue of neutropenia makeso it difficult to be on any Meds. bcos my blood country always drops. But I pray they start reducring d steroids by my next appointment in January .


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