Recently diagnosed, hoping for some good news!

[HettieBoo]

Hi

First of all, sorry about the length of my post.

Where do I start? I am looking for some kind of good news or positives - it all feels really doom and gloom at the moment.

My 17 year old son was diagnosed with Lupus in November 2024 following a drop in his platelets and some marking/bruising. He was already under a haematologist, following a string of ill health winter 2023/2024 and some abnormalities in his blood. He also has an identical twin brother who was diagnosed with ITP (low platelets) in 2021 and then antiphospholipid syndrome (APS) in July 2024, so autoimmunes are ever present in our house!

Anyway my son was started on Hydroxychloroquine in December 2024 following his diagnoses, he was also on Eltrombopag to increase his platelets as they have been at less than 10 since November.

After a consultation just after Christmas with his rheumatologist at Nottingham it was decided that he would have a 3 day steroid IV and IVIG infusion to both increase platelets and start getting the Lupus under control. He was booked into the day ward for 3 consecutive days, however before this could happen, following a routine Friday evening appointment / blood test with his haematologist in Lincoln he was admitted as his face rash was bleeding and not stopping and he had a mouth full of ulcers.

I guess before I go on I should say that his very vigilant haematologist is an adult consultant at one hospital (Lincoln), where as his rheumatologist is a children's consultant based at another hospital (Nottingham) , in a different county and neither are particularly local to us!

Although his low platelets are driven by the Lupus he has both consultants involved as his issue crosses over and APS and Lupus are quite closely connected so there is a chance that both of my boys could end up with both health issues.

So after a night on ward being monitored etc, they started him on the steroids on the Saturday morning and my incredibly frustrated son and I settled in for a little stay!!! He had the steroids on the Sunday too, then on the Sunday night my son started complaining of a burning sensation in his finger tips and a deep itchy feeling in the bottom of his feet, his achilleas were also hurting all day but we put that down to the fact that he is a keen long distance runner and had not been out for a few days. He started running the cold tap on his fingers however after speaking to the Dr on the ward she said to warm them up and provided thick socks for his hands and feet. I think we got an hours sleep that night. The next morning the nurse came in and started his third and final steroid IG. The intension was that they would do the IVIG that day or the next however just after the IG was taken out, my son started writhing about in what looked like extreme pain. He could not lay down, sit up or walk around The pain he felt was in his chest and radiating out and across his back. His blood pressure shot up too, they did a heart trace and CT scan of heart and abdominal area. After paracetamol, which did not touch it, he was given morphine. His haematologist came to see us and said that his platelets had gone up to 57 but they could not explain the pain so he was being transferred to his rheumatologist as it was probably Lupus related.

He was transferred the next day, 24 hours later his platelets had dropped to 32 and the plan was for IVIG to be done at Nottingham under the supervision of his rheumatologist. Because he was an "inmate" they did scan and test everything which they had planned to do in a string of appointments so that in some way helped. There was some abnormalities on the heart trace done in Lincoln but Nottingham were happy with what they saw? And as his platelets had gone up he was discharged a week later without the IVIG.

Following his stay and huge amounts of steroids, he was put on oral steroids and MMF as well as continuing his other meds. However since coming out of hospital my son has had various aches and pains like calf muscles, feet/ankles and jaw. He has also come down with a cold. He was told it would take about three months for the MMF to kick in and be fully effective but I think what he really wants to know is, if once his MMF is in his system his life can return to normal. He wants to be able to return to running regularly and not ache and feel tired all the time.

It honestly feels like a kick in the stomach every time he comes to me to tell me something hurts or he feels rubbish. He is currently working towards his A-levels and learning to drive and would like to go to university but is just so worried about how much this illness is going to take over or affect his life.

Again, sorry for the lengthy post but this is all new to us / him and it has all happened incredibly quickly. Anyone with any advice / knowledge or anything they would like to share would be gratefully received.

Thank you. ☺️

[Potatoheat]

Hi HettieBooCan't offer any solutions to you but just to say so sorry to hear your sons news. It must be so frustrating for him and you just when the world is his oyster so to speak. Poor lad. I hope you find some solutions soon and he can get back to a more normal teenage life .

Is there a Lupus Centre of Excellance near you rather than a plain rheumatology consultant? Sometimes rheumys are not too up to date with Lupus.

Don't forget us crazy lot are always here for a chat . ❤️

[Treetop33 in reply to Potatoheat]

Echo this. I have APS/Lupus and am connected to Bath (before that, Guys). They are much better than any experience with local hospitals.

I've heard that Men, when they get lupus, get it much worse. That said, for most of us after first diagnosis we tend to stablise a bit and bump along on management doses of meds. It's important to identify triggers - everyone has them - which can cause flares. Stress is a huge one for me.

I feel for you. My daughter was diagnosed with a congenital condition last year and it continues to break my heart x

[HettieBoo in reply to Treetop33]

We have read so many pieces of conflicting research, that is why I wanted to post on here. My son is super fit, being a long distance runner but I think what I wanted to know was that once we get over this initial BIG bump, his life will be ok. He will be able to do the things he wants to do, maybe a little less often but they won't be completely off the cards. I am hopeful that with some little changes that will become his "new norm" he can be like every other 17 year old boy and not let this take over.

[Treetop33 in reply to HettieBoo]

Maybe. My experience is that when your body gets an autoimmune it's saying no to something. With me it was stress, doing to much, overexerting and overworking. It's what causes a flare for me, so I assume it had something to do with the cause. But other causes are viruses (and everyone has had Covid a lot), genetics, toxic exposure, pollution etc. So you need to pay attention to what causes a flare - what was he doing a day to three days before a flare - and adjust. Everyone with autoimmunity needs to pace (see spoons theory), and that is key to some kind of new normal and perhaps remission.

Realistically, however, it's best not to imagine that the adjustments will be small and he can get back to normal. You have to understand the illness in order to survive with it. And ultimately, you have to learn to accept what you can and can't do. Currently, for example, I have a temp job that's four days a week. It's too much, and threatening to cause a flare.

It's very hard for a teen to accept. But he will.

[HettieBoo in reply to Potatoheat]

Thank you Potatohead. I feel at the moment that he is getting excellent support from his team of rheumatologists at Nottingham and because we are rural Lincolnshire I am not convinced there will be a Lupus Centre of Excellence near by but I will certainly have a look.

[smeackles]

Hi HettieBoo

I am sorry to hear the complicated battle your son (and yourself) are in the middle of right now. I will say - there is obviously no good stage in life or age to have an autoimmune disease thrown at you. But as a mother of a 24 year old who was diagnosed last year, having finally found her first job 2 years after leaving uni she had worked so hard for - it really does feel cruel, as the impact and severity of this every changing disease is unknown, and they have their whole future ahead. I still to this day wish I could take it from her and have it myself.

We don't have the added complications your son has, and we are still (nearly a year down the line) trialling to get the meds right to get it under control. We have had our moments (last Thursday night at Bath RUH A&E) - but I will say she has kept going and has not taken a day off unwell (struggled on occasions and been sent home once) but has not let it stop her so far. She desperately loves what she is doing and there is nothing else she wants to do, so it has given her focus. As a mum I am ever fearful each day it could change and a flare up be debilitating and throw things off track - but thats the mum element and I am just praying that it doesn't stop her future dreams. From personal experience determination goes a long way - not letting it beat you and know you are working towards getting in control is important.

Obviously with the right consultants and balancing the right medications is key to this. I have been told the meds for the immune system do take at least 3 months to start doing their thing. We're on Hydroxychloroquine, Azathioprine & Prednisone to name a few, but I hope your son feels some level of normal soon and try and keep positive mind set that it won't win, he will.

x

[HettieBoo in reply to smeackles]

Thank you Smeackles, your reply was lovely, from one mother to another who both wish they could just take this horrible thing away from their babies (however old their babies are!).

My son is very determined, I honestly believe the only reason he got here in the first place, following twin pregnancy complications, is because he is just really stubborn!

I think after the initial shock and some adaptions, he won't let it beat him but it is just rubbish that he and your daughter are having to go through it at such young ages.

I do think we are "lucky" in some ways, they were already keeping an eye on him because of his brother and because of that he was diagnosed in weeks, where as so many others take years and years to be diagnosed. He is on a cocktail of meds, MMF and Prednisone both for Lupus, Eltrombopag for the low platelets and then Iron and Omeprazole to counter all the others?!

Your words have gone a long way to feel that there are blue skies ahead and we just have to keep plodding towards them. Has your daughter struggled mentally with all this? I think in some way the mental side has been the hardest for my son, the whole "Why me?" thing and him not knowing how this will affect him long term. As a parent we say it is going to be ok, we can get rid of the scary monsters but this one is always going to be under the bed if they peep but with your words, I feel like I can probably at least cage the monster and maybe even tame it!!!😂

Keep us posted on how your daughter is getting on, it is fab that she is not allowing it to ruin something she has worked so hard to achieve, it sounds like she is determined and bloody minded too, not bad skills to have at all.

Thank you again and take care.

X

[smeackles in reply to HettieBoo]

Yes it has impacted mentally, part of this was due to the higher doses of Prednisone they had her on, it might have been a faster acting aid to symptoms - but its own side effects sent her anxiety through the roof. There was nothing I could say to alleviate a problem or situation, 20 suggestions were all wrong and could not talk her down or up. They added Sertraline and that made a big difference to that.

The profession she has gone into is one where you finish one job and have to find the next - not your average role - so that adds pressure and I think some down time between them may allow more worries in. This first role was for 8 months and her first break between jobs is coming up now - but only for a few weeks. She got diagnosed 2 days before starting - I think that saved her a little as she threw herself into it and didn't really go there on what might be ahead. That was me, have tried to find out all I can to help here (hence being on here often to ask for advice or see how others are doing.

I think there was a little luck for you in such a fast diagnosis - I've read here many struggle for a long time to get help and suffer along the way. We were luck too in that the rash started in March and was treated as rosacea, then impetigo and thanks to a locum GP recognising it as lupus she was sent to hospital and diagnosed in weeks.

I think stubborn accompanied with determination will take him all the way 😂 like you say good traits to have an vital in our kids journeys. Wishing all the luck in the world for him to be running again and living life as fully as he can & to your other son, with his challenges too.

This is a great place for support and help. Always someone with a supportive kind word to help lift you from the lows. xxx

[WinterSwimmer]

Gosh, that all sounds so frustrating for him and beyond scary for you. I can only say that MMFworks really well for me (I’m taking Cellcept not other one). I do still get a lot more tired than normal people. The more I do the more achy I am at bedtime and I cannot say that I am completely pain-free… But I swim outdoors all year round, and in the pool as well during the winter months so that I can get some distance in. At the moment I am regularly swimming 2K (I’m 65) and there is no reason why your son should not get back to his running once he is better. At university, he should make his disability known and he will get special adjustments, which may be important if he gets unwell and cannot meet his deadlines. Fingers crossed the MMF will work for him.

[HettieBoo in reply to WinterSwimmer]

Thank you WinterSwimmer, your response gave me lots of hope. You are a better person than me swimming outdoors all year, I love the sea and we live on the east coast but I can not bring myself to get in in the winter 🥶.

At the moment, and he is only just up to his full daily amount, the MMF seems to be working. He is definitely more tired but he managed his first track night on Tuesday, not a full session but he had no aches or pains after or the next day, so that made him smile. And has done a few local road / beach runs under either mine or his dad's watchful eyes, as a just in case. As I have said previously he is stubborn and bloody minded so he won't let it beat him, but he does have to learn to maybe pull it in a bit and rest if needed.

He had his bloods done today for rheumatology, something about checking levels, I guess that is to see if the MMF is starting to take affect so I am hopeful I will hear soon on those results.

Enjoy the swimming, let's hope the slightly warmer weather arrives soon for you!

😁

[WinterSwimmer]

Seriously not better than anyone - I promise you. Just determined to have my life, as your son is by the sound of things. Yes, he will need to learn to rest when necessary and that might be a long road (it took me years of anger and resentment to accept that sometimes I just can't do what ever it is I want to do). And I have traded off a lot of stuff I don't much care about for the things I do care about. I rarely do nights out, for example - because I prefer daylight and being in water to being in a pub or club - and I can't do both. Your son will learn what is important to him and the extent of his capacity for doing stuff. But I am so glad he is getting some relief and can do some of what he loves. That's massive. Long may it continue. xxx

[Sunshine634]

I'm sorry to hear your sons journey has been so difficult and painful.

I am currently writing a personal blog unsure where to share but noting down all the changes I have made since being diagnosed 2 years ago.

I went from gym 3 times a week, doing the 3 peaks, boxing twice a week, long walls, short runs but was a very active person. I have had periods where this has still been possible but I have had to learn to listen to my body. I have biological Infusions, hydroxychloroquine and methotrexate- when I'm good I embrace it, when I'm struggling I try and embrace that too. I can't lie it is frustrating at times and I won't lie I have struggled with the transition.

I have maintained my full time job, I work in care and in a management position so can be stressful at times, I sometimes think if I did a less stressful role I may have more energy after work but I love my job so it's a little sacrifice I make.

The mental health side of things, grieving the person you once were, thinking why is this happening to me is hard. And I wish I could offer some support to your family on this but I am still figuring that out myself 🙈

Trying to remain positive and enjoy the little wins and when you feel great do what you love, but when your flaring or feeling pants, listen to your body and give it the rest it needs. Don't be hard on yourself I think that's the biggest thing I would say.

I hope your son funds his happy medium, it's not impossible xx