Newly diagnosed just a rant!!

[Sammyb246]

HiNewly diagnosed literally 5 days ago. Was in hospital fir 3 weeks wbc platelets and hb literally 0. Struggled through bone marrow biopsy lymphoid biopsy. Isolated in hopsital due to no immune statements.. really ill with joint pain diarreah fatigue collapses 3 times at home ( I know I should of go a to and e earlier)

Now diagnosed with lupus and hlh. Still not feeling great but much better then originally. Been put on immunsupresents steroids and other meds to try and help. Gave started to feel better today ( feels wierd though to actually be feeling OK after months). Still struggling stomach wise sudden need to go yo number 2 quite often as well as cramps had a endoscopy which waiting for results...

Anxiety issues big time as well haven't struggled with it for years till now scared to leave house in case need the loo plus struggling with weak legs which I worry I will collapse in public.

Thank you if you read just feel like I needed some where to release.

[Hamptons]

it’s ok to be scared, it sounds like you have had a difficult few weeks. I hope you can start to get answers and see improvements.

[Tinkabell555]

I’ve been there and understand what your going through. Had a couple of colonoscopies and was put down to IBS and lactose intolerance for many years. I suspect it was undiagnosed SLE and now I am diagnosed with SLE and properly medicated my stomach issues are much better! Try to manage anxiety with relaxation techniques, challenging your thoughts and behaviours by not letting anxiety and toilet challenges get in the way of your life. If u can accept that u may have t occasionally run to a public toilet it will hold u back less, ur anxiety will lower n u can live how u want to live which will in turn reduce stomach upset! Trust me I’m a doctor haha good luck all the best! Xx

[Sammyb246]

Can u also ask I'm taking 30mg prednisone as well as immunosepresent and other meds. I've been getting barely any sleep feeling completely out of it at times. I've also been getting what I think is a tingling feeling on my face. Is this normal?

[Krazykat26]

You've been through so much it's no wonder you're feeling anxious Sammy 🤗🤗gentle cyber hugs to you right now.The meds that you've been prescribed are probably pretty heavy considering you've only just been diagnosed. With hydroxy there can be stomach/heartburn issues as side effects. Immunosuppressant meds take a while to get into the system as does hydroxy so I'm thinking that it's the steroids right now that are helping you to feel some improvements. When they prescribed the steroids did they also give you a med to take to protect your stomach from the steroids? Usually a stomach protector is prescribed alongside prednisolone.

Welcome to the group 💐This is the best place for ranting n discovering all there is to know about living Lupie life. You're not alone 💜🌈xx

[Sammyb246 in reply to Krazykat26]

HiThank you its nice to talk to people who are experienced and know what's what I do take a tablet to protect my stomach called omeprazole I think

[Krazykat26 in reply to Sammyb246]

Yes that's the one..I take it too. I take my omeprazole in the morning about 40mins before I take my meds (including Prednisolone) . Someone here who's a trained nurse told me that the omeprazole coats the stomach like a web n it's best taken a while before the meds in order for it to disperse. Maybe that could help your tummy issues 🤔 Honestly I've learnt more about lupus here than from any of my doctor's. We live with this 24/7 and although each n everyone of us is unique we can post it here and someone will have experienced it n you'll get loads of tips on how to cope etc. It's a very supportive community 💜🌈xx

[Sammyb246 in reply to Krazykat26]

Thank you so much I'll start doing this tomorrow morning to see if it helps xx