Multi-organ failure problems

[LottieLou96]

Heya there 😊

Trying to keep positive atm I always find a way, but not able today to go into work due to back pain and abdominal pains. I'm aware some of it is sciatica,and nerve pain and muscular inflammation due to previous trauma, and I know I am a bit tender usually in my flank region in particular. But this last few days, boy oh boy, it's been relentless. And the tenderness of the kidneys, liver and spleen don't bear thinking about.

I just feel quite similar to the other times my organs have given up the ghost for a while, but don't know if it's just bc my medications are too much for them to handle. Or if it's just the lupus raring it's ugly head on me.

I know it sounds stupid to feel as if my organs are.packing in. Makes me sound a bit nuts. But probably warrants talking to some whether that be my rheumi or gp. However, the previous times, no one really did anything until I ended up in hospital.

I can't walk at the moment or sleep from the pain, not ideal when I have an active job in ED. Managed to get some strong painkillers but it hasn't eased the pain which is a bit concerning. If anything I think it's made it worse.

Last q of rant, can HCQ cause damage if the organs are already poor functioning and very damaged.

Bless ya all, Lottie

[Spotty-ewe]

Hi Lottie, I’m VERY sorry to hear what you are going through! 😫 Please speak to your GP or consultant and if they don’t appear to take you seriously remind them that you ended up in hospital last time and you are therefore understandably very worried. You shouldn’t be going through all that with no help. Let us know how you get on. Big hugs 🤗🤗💕, Spotty.x

[LottieLou96 in reply to Spotty-ewe]

I spoke to my GP, unfortunately he wasn't too helpful, I can't complain, he just doesn't really understand the multiorgan involvement lupus can have. He gave me cocodamol and diazepam for the radicular element of the pain, but only just feeling slight relief once I doubled the dose. As I thought NHS 111 aren't interested because there are no red flag symptoms for my pain, bc they are looking for cauda equina which I know I haven't got. I have had radicular/sciatica pain for many many years but it has never prolonged this long. With such a worsening of kidney, liver and spleen pain. I've held off the HCQ for 3 days that has seemed to help a.little but I get the brain fog and visual disturbances back with vengeance. I don't really qualify for hospital unless I don't feel my legs or start bleeding profusely. So for now I'm told to hang tight and follow the physio instructions to go to the gym, I'm like I can't go to the gym rn.

We will see, I'm gonna need to adjust the dosages of things maybe going forward

God speed

Lottie

[Spotty-ewe in reply to LottieLou96]

So sorry to hear your GP was of no help Lottie. Once you feel better it would be a good idea to drop off some literature provided by Lupus UK to your surgery. If you have a practice manager contact them and ask about providing info for the medical staff and patients. I did that and it really helped.But to get back to your problem now, I see you mentioned to Cecily that you plan to phone your Rheumy hotline. That is a brilliant idea. If they can’t advise you I don’t know who will. Wishing you all the very best of luck and hoping and praying you feel better very soon. 🙏🏻 🤗xx

[LottieLou96 in reply to Spotty-ewe]

Yes good shout indeed,

I did do that at my last practice, but only recently went up this way, so this practice is new to me. I sent a host of documentation at that time on the even lesser known familial CLE, and some docs on SLE. I also had a 10yr blood result analysis and graphical representation at how my bloods had worsened over the last ten yrs. Even without immunosuppressants my WBCs and complement proteins barely register. It's a long standing jk that I literally have no normal immune function yet I work with very sick patients. But youre right the lupus UK stuff is a good read for those not in the know. Thankyou 💖

[Spotty-ewe in reply to LottieLou96]

I hope it helps, but in the meantime I hope you get the help you need and begin to feel better. 🙏🏻

[CecilyParsley]

Hi Lottie, you sound seriously unwell and should call for an ambulance in my opinion. You need more help than a GP can give you lovely. If it is your back then you need support with that but if, as you suspect it is an issue with your organs you really do need to be seen as quickly as possible. Please let us know how you get on. Big gentle hugs xxx

[LottieLou96 in reply to CecilyParsley]

Thanks for the hugs CP, I spoke to my physio, not too helpful, and well the strong analgesia isnt touching the spot. I will ring my rheumi hotline and see what they suggest. I really do hate.going to ED, previous experiences in hospital have given me some anxiety over ever going in again as a patient

[Hidden]

Call an ambulance or better still a taxi to hospital as it will be quicker.

[LottieLou96 in reply to Hidden]

I just don't want to call wolf, because I know ED is so busy.

[Hidden in reply to LottieLou96]

Think I sent my last reply somewhere else ...... bit of a poor user on these web thingies (they’ll never take of) 😆😆😆

[Hidden]

Not worth the risk in my humble opinion.Different story but early on in covid lockdown I injured my leg exercising at home. Thinking it was just a strain I didn’t seek help...... now I have a permanent limp, can't, drive or stand for long and when my company later closed due to covid I couldn’t get another job as a result.

Hard lesson learned now out of work, in pain, limp and no money! Go to hospital!

[Pumpkin2009 in reply to Hidden]

That is so sad. Your advise is good. I think we so many times we think when something is wrong it will get better as well as not sure how we will be treated. Unfortunately, waiting too long can be harmful. Take care.

Healing hugs.

[LottieLou96 in reply to Hidden]

Sorry to hear that happened to you. You are right in your advice. I think its likely both flaring back injury and worsening organ function at the same.time. I will speak to NHS 111, and see if they can assist better. I know I work in ED, but I have a fear of staying in hospital which is difficult to overcome. Blessings and hugs

Lottie

[Hidden in reply to LottieLou96]

It was my own silly fault, but life changing.Let us know when you get good help or feel better 🤗

[StriatedCaracara]

Blood tests and urine test - what do these show Lottie?

[LottieLou96 in reply to StriatedCaracara]

Heya SC, haven't managed to get bloods/urine test done at the GPs, bc they ain't being too helpful. Spoke to the rheumi hotline who said to stop my HCQ for a few days, just to see if things settle or get worse, and would like bloods/urine tests etc, down there.

So I'll try and make my way down Edinburgh way when I can, I do have some additional scans next week to look at all that jazz (kidney/liver/spleen), im sure my rheumi could refrain from calling it a 'salvage mission', but I don't think I can make the journey (140miles) just yet. I wish my rheumi was in Aberdeen, then I could have my bloods and urine etc done literally where I work.

My bloods and urine weren't great from last time, but again they haven't told me in what way, so not too much help. You know what they're like on the whole. Anyway I can't complain, I'm still here, God keeps me going and a heavy dose of pain relief haha. Well at least it means I can get up to get a cuppa of Yorkshire brew.

[StriatedCaracara]

Can your rheumy request tests that could be done at your GP surgery?

In the same health authority I think this is possible in England?

[LottieLou96 in reply to StriatedCaracara]

Different health authorities I'm afraid. That's the problem at the moment. I'm half tempted to walk into work and just ask them to take my blood work and urine dip.

[Alida_Bennett Partner LUPUS UK]

Hi LottieLou96

I am sorry you are feeling so unwell at the moment. I would urge you seek the help of either your GP or your consultant in relation to these symptoms and your questions in relation to Hydroxychloroquine.

Below is a link to a blog article which has lots of advice in regard to getting the most from your medical appointment, including advice in relation to second opinions, referrals and what to do if you are not happy with the treatment you have received, which I hope you will find helpful.

lupusuk.org.uk/getting-the-...

I hope you can get the support you need from one of your doctors, but if you are unable to see them, then please dial 111 for advice or 999 as appropriate.

Kind regards

Alida

[LottieLou96 in reply to Alida_Bennett]

Thanks Alida for your advice and response.

I know that the most sensible, prompt option would be to seek urgent treatment. It doesn't help that between NHS boards in scotland they don't share their hospital information and there was the loss of all my medical info from England, accept the few bits I have by email or written correspondence. It fails to paint and accurate picture to my GP and NHS staff up in Grampian.

I have spoken again to my rheumy and I'm awaiting a phone back today from her, with the possibility of moving my scans forward alongside blood tests to acknowledge any acute problems.

In the end I'll be alright, I'm just taking time to recooperate.

BW

Lottie

[Alida_Bennett Partner LUPUS UK in reply to LottieLou96]

Hi LottieLou96

Unfortunately we know from our members just how difficult it can be up in Scotland. We have volunteers up there who work very hard to raise all these issues with the various Boards but it all seems such an unnecessarily frustrating process. Meanwhile, those in need of support and/or treatment have their lives made even more difficult.

I do hope you hear back from your consultant - keep us posted and let me know if there's anything more we can do.

Kind regards

Alida

[LottieLou96 in reply to Alida_Bennett]

Hey Alida,

Sadly not heard back from my consultant but after some days without taking HCQ my kidneys and liver feel alot less acutely damaged. I'm re-cooperating slowly. But I couldn't get the GP to see me in person or get.bloods/urine.

I was so convinced I'd have to ring 999 and have a stint in hospital. Because it was really unbearable. But thankfully as I say it's improving.

I also haven't had a seizure since stopping HCQ. I hadn't realised the link, between starting HCQ and an increase in my seizures. So I don't know if there's a link there. Unfortunately not taking HCQ though makes the pleurisy flare and the brain fog return. Again though this is less worse than the issues experienced this last week or two.

So I'm blessed and hopefully more things will change for the better.

BW

Lottie

[Roarah]

If you have suspicions of organ failure ask for a CBT with a metabolic panel. Organ damage shows in blood work not just scans. Simple and cheap way to rule out things. Good luck.

[LottieLou96 in reply to Roarah]

Yes indeed it often does, I've unfortunately got another week's wait for bloods from my GP. Since off the HCQ I am improving slowly in the kidney and liver department, but my rheumy over telephone has told me to recommence it and talk to her in two weeks time to see if it's got worse again. Thankfully I can get my GP to do some bloods as I say in a week. It's frustrating with.my history of acute on chronic renal and hepatic failure that they won't take it a bit more seriously as any admission I've had in the past has required at least 1+ month of inpatient treatment and gets me away from my work which I enjoy.

BW

Lottie