Diagnosed with lupus 18 months ago

[YellowLego]

Hi, I’m not new to this forum , though this is the first time I have posted. I have spent the last 10 months since signing up reading all your posts and plucking up the courage to finally post!! I’m currently sat waiting in the DSA suite in my local hospital to be taken down for a liver biopsy. I’m quite nervous about it. My lupus journey thus far has been a massive rollercoaster ride, one which I cannot wait to get off if I ever will, or atleast slow right down! I’d started been poorly months before my diagnosis, going backwards and forwards to my gp with various problems. I already had sjrogrens syndrome (diagnosed 2003) Eventually I ended up with pneumonia and was rushed into hospital. My bloods were all over the place , I told them I had sjrogrens , they contacted my rheumy consultant. I was admitted into hospital. I had numerous things wrong, I had an enlarged spleen, obviously struggling to breathe properly, was in so much pain I was on morphine, had oxygen for over a week, on ov antibiotics for a week. My kidneys had all but given up. I was not a well person, so much so they ended up involving critical care unit and had icu on standby, they even called my next of kin as they feared I’d taken a turn for the worse. I had several more blood tests, arterial blood tests. CT Scans, heart scans , x rays. You name it I seemed to be having it. I was pretty much out of it most of time with the pain relief I was on. Eventually the pneumonia started to improve and my rheumy consultant finally diagnosed me with Lupus. He said to me that basically it was like the inside of my body had been ran over by a double decker bus! Still struggling to breathe I was finally able to go home after a fortnight. I could barely walk I was so weak. It took a few months before I’d recovered enough to be able to potter around the house. I’d lost a lot of weight but have since put a lot back on due to the steroids! I’m losing hair but not so much that I have bald patches though is still upsetting as I had long hair which I loved but I had to have it cut short. I was prescribed mycophenalate. My breathing issues are ongoing and are still under investigation. I’d been on mycophenalate for 7 months and felt fine on it but then my liver function started to elivate. They ended up stopping my lupus meds to see if that made a difference. It didn’t. It wasn’t until 5 months later they decided to try cyclosporine which bypasses the liver to see if that made a difference . It didn’t! So hence why I’m sat here waiting for the biopsy. They say until they get to bottom of why my liver functions are elevated they cannot progress with my lupus treatment effectively. Wish me luck!!!

[Spanielmadlady]

Hi and welcome.im sorry to hear you've had such and horrendous journey.sadly you are not alone on that score.im pleased things are improving. I had a kidney biopsy in 2018 and it wasnt anywhere near as bad as I imagined. Good luck and get back in touch once it's over...you'll be fine.big hug xxxx

[YellowLego in reply to Spanielmadlady]

Thank you. It’s good to know I’m not alone with this , but also sad to read what others have been through . But I’ve found over the months reading all the posts how supportive this community is. I’m now back on ward after having the biopsy and though felt a little discomfort wasn’t as bad as I was expecting. Still I’m very glad it’s all over and done with. Xx

[Spanielmadlady in reply to YellowLego]

You are far from alone and we are here for everyone to rant,moan and laugh .the worst bit of the kidney biopsy was lying still for 6 hrs wasnt even allowed up for the loo.Fingers crossed they have some answers for you .rest up now xxx

[LBCradio]

I hope you make a speedy recovery.

Best wishes

[YellowLego in reply to LBCradio]

Thank you . Xx

[MEGS53]

Oh my goodness, you are having such an awful time of it. My heart goes out to you.

I had a liver biopsy a while ago as my LFTs were very abnormal. Having the biopsy wasn't nearly as bad as I'd feared and I hope the same goes for you. My liver function, a year after the biopsy, is back to normal with no tangible cause for the change. I hope this helps.

Please take it very gently for a while until you recover and do let us know how you get on, 🤗🤗🤗

[YellowLego in reply to MEGS53]

Hi, I’m back on ward now after having the biopsy and it wasn’t as bad as I’d expected though I’m still very glad it’s over and done with. Now have to stay another 4 hrs before they’ll let me home. Thank you for your kind words xx

[MEGS53 in reply to YellowLego]

I'll bet you're happy it's all over!Now rest for the next 4h in a lovely NHS bed (yuk, yuk) and take it very gently for the next few days, and longer if necessary.

Let us know how you get on. 🤗🤗🤗

[YellowLego in reply to MEGS53]

Will do. Thank you 😊 xx

[MEGS53 in reply to YellowLego]

😘😘😘

[Tiggywoos]

You’ve been super brave which also means you fit in nicely with the forum warriors ❤️. Be kind to yourself and fingers crossed you get on some decent meds soon to help you. Keep us posted xxxx

[U400TAR]

Aw bless you I’m so sorry to hear you are going through this. You aren’t alone though that’s what I love about this forum we are all here to listen and support. Look after yourself and get plenty of rest and know that we are here for you, wishing you a speedy recovery 😊

[Maddymay65]

hi and welcomesorry you are having such a rough time ,hopefully the liver biopsy will tell you something and you can move foreward. I decided after a particularly bad time in 2014 to try and take one day at a time , i assess every day as it comes and adjust , its sometimes a pain but it helps. Hope that can be of some help here, take care and glad you posted. The forum is a supportive safe place, sending a hug xoxo M

[CecilyParsley]

Oh my goodness what a dreadful time you have been having. I am so very sorry. I truly hope that your liver biopsy goes well. Please let us all know how you get on. Sending you big Cwtches xxx

[April2018]

Hello,I will be holding you in my heart. X

[daffodill2]

You have had a terrible time it must have been awful for you hope all goes well for you today .

[rosebud52]

I hope everything goes well for you, I also had a kidney biopsy and had to lie for 6 hours without moving but fortunately I had a catheter so no worries there, I hope the next time you post you have some good news to share xx