Recovering from Lupus

[yakamalayo]

Hi, I'm a Lupie mum - my darling daughter was diagnosed 6 months ago and is doing pretty well, but it's scary. At the moment I do most of the reading and research - sort of trying to protect her from it I guess, and she just wants to try to get on with life as normal as possible, revise for exams, etc., not spend hours trawling the internet. I'd really love to read some inspiring stories of people who've recovered or had long periods of remission, so I can understand the positive possibilities and not get totally bogged down by fears for the future. Obviously any thoughts on what contributed to the recovery would be gratefully received. I realise that people who have recovered and come off drugs, or aren't in the midst of Lupus at the moment, may not be active users of the forum, so I mustn't get depressed if there aren't many replies! Any positive stories would be much appreciated!!!

[anxious44]

Hello how old is your daughter ? My daughter was diagnosed at 16 after suddenly becoming unwell, the last three years have been interesting ! She is now doing very well, she has a great consultant. Lupus uk have a brilliant guide for schools, she has extra time for her exams and rest breaks which has been brilliant - let me know if you need any info.

[yakamalayo in reply to anxious44]

Hi and thanks so much for replying. My daughter was diagnosed at 17, although she is 18 now. She is about to sit her A levels and has been given the extra time and rest breaks as well which is brilliant. She was with a shockingly bad Rheumatology department in Leicester to start with so we have transferred to Birmingham - Professor Caroline Gordon - which is much better. Is your daughter still studying or is she in the world of work?

[Hidden in reply to yakamalayo]

Hi yakamalayo, I am also being seen at Leicester and having a shockingly bad experience too. I am thinking of asking to be referred to see Prof Gordon too, would it be worth it? Did your daughter have to wait long to be seen and who did the referral - the GP or hospital consultant? Sorry to pick your brains but am sick and tired of being treated badly and like a hypocondriac!

[yakamalayo in reply to Hidden]

Hi. It was actually quicker than we thought. She was under Dr Sheldon in Leicester and he did one referral but her GP also wrote a letter requesting a referral, so I'm not sure which triggered the response. Definitely worthwhile.

[Hidden in reply to yakamalayo]

I saw Dr *******, and he was useless and horrible. He actually told me I was taking up too much of his time! Thanks for this, I will ask to be referred on my next appt.

[Bronagh2015]

Hi Lupie mum, I really feel for you, I think we would much rather suffer something ourselves rather than watch our children suffer it. I got Lupus when I was 29, I am now 48, and can honesty say I have had good quality of life. I had 2 young children at the time and had only being married 6 years. Now I have had awful flare ups and been in hospital many times but I have also had great times when I went to Florida and did all the theme parks etc. my advice to you would be just let your daughter get on with her life and deal with things as they come. You and her will learn as you go along and honestly there is life with Lupus.

[Joyjo]

I was diagnosed at 16 and am now 38 with a child and a full time career. I have had many flare up over the years, but most were in the first few years of diagnosis. Now I am able to recognise when a flare is coming and adjust my lifestyle and medication. Around 18/19 years old I was clubbing non-stop and living reckless which caused a lot of flare ups, but I soon realised that was not a good idea. I had two other cousins who were diagnosed with lupus around the same time. One died aged 21 the other had a kidney transplant - that made me really get serious and look after myself properly.

I took a bit longer to finish my degree due to hospitalisation but I made it and am now a secondary assistant Head Teacher in a large inner city school. After uni I travelled around the world coming home every three months for hospital appointments and prescriptions. Although I do live with everyday pain, I'm just used to it now.

For me the only major disability has been having children as a had a major flare up in the late stages and after pregnancy. As a result I have only had one as I am fearful of going through that again.

As a lupus daughter I would say don't downplay the effects of lupus to your daughter as she may resent it. My parents did this to protect me but it made me feel like they did not recognise the pain I was going through.

I wish your daughter well and hope that she is able to cope well with her studies. Please ensure that you inform the school SENCo, so that they can make the necessary applications for Exams Assess arrangements and Special Considerations.

Also make sure that your daughter is educated about lupus so that she can recognise potentially serious complications if they arise.

All the best. Xx

[yakamalayo in reply to Joyjo]

Hi Joyjo.

Great to hear that you are managing a really full life despite the disease, and especially that job, which must be incredibly full-on and stressful!

My daughter is now 18 and I am very aware that this is her disease and she needs to 'own' it and take responsibility for it, so I've pulled back from my initial, super-protective response, and I totally understand what you are saying about that. It's been incredibly hard for me to first flip into super-protective mode and then having to let go of responsibility for her faster than if she hadn't been ill. My son didn't leave home until he was 20 and the transition in the parenting role was much slower, whereas this has felt sudden and painful - and she's still at home! She'll be going off to Uni in September though, which will be another major transition.

Your cousin's situation sounds horrific and must have been very traumatic for everyone and an enormous wake-up call for you.

Luckily DD has always been very healthy and is doing what she can to support her health, so she is completely gluten and dairy free, avoids refined sugars, and doesn't go out partying/drinking too often (although Uni coming up...!). I'm assuming this is helping as she is doing really well at the moment. She is also managing not to get too stressed over her A levels, which is brilliant.

I'm sorry to hear about the problems you had with your pregnancy and afterwards. It is something that I am very aware of as I know my D wants to have children (plural!). But there's no point in worrying about everything now - we (she) will just have to cross that bridge if and when she comes to it.

Best wishes xx

[Joyjo in reply to yakamalayo]

How is your daughter doing?

[Razoo]

Hello Yakalamayo, how are you mummy? I feel for you that your poor darling has this dreaded disease, but there is life beyond it. I had been pretty much in remission for about 6 years with the odd niggle of pain here n there. But the last 2 months it has flared up, I just wish I knew what started it back up again. It's awful that your daughter has got it at such an important time in her life. I hope she has understanding friends. I got sick when I was 16, with a disease called Myasthenis-Gravis, an Auto Immune disease, then I got Lupas 17 years ago just after I had my daughter.

As for what contributed to recovering somewhat, I have no idea, I wish I did though as I would keep doing whatever it was. Since Id been in remission I had been under a Rheumy, so if I am in a heap of pain I take 10mg of Prednisilone. But one i find a Rheumy that takes an active interest in me, I will see what other options are out there.

Please say hello to your daughter and give her hug from me please.

Keep fighting and winning. You are a great mum doing what your doing. But being a mum of a child with an illness is heart breaking.

Take care.🍀❤️

[yakamalayo]

Thank you for your note. My daughter's best friend was diagnosed with MG a couple of years ago and has been pretty bad recently. There seems to be less known about that than Lupus. She's been on medication but it is not doing the job. Then after several falls which she couldn't get up from for a while she has been put on steroids, but it seemed to still get worse after that. Perhaps the diagnosis isn't right after all. What medication did you take for MG? Is there a similar forum for that as this one is for Lupus? We're trying to support her as much as we can as she has less family support I think.

We're really hoping that my daughter's gluten and dairy free diet (and pro-biotics) will create the foundation for her immune system to heal itself over time. At the moment she's doing really well, but you just don't know when things might flare, or get worse. But then they can presumably get better too, so we have to remain optimistic!

xx