Lupus Lupus Update - New year, treatment, consultant... new me?

Lupus Update – New year, treatment, consultant… new me?

The end of 2019/start of 2020 has been a little rough for me shall I say. At the beginning of December the days running up to our holiday to Lanzarote I had flu-like symptoms. During the trip, I actually lost complete sense of smell and taste which was so strange, I’ve never had this symptom before ever! It was also truly devastating as anyone who knows me knows that I am a total foodie and love to enjoy the flavours of the food I eat, and throughout the whole holiday I couldn’t taste a thing – not one bit of the delicious Mediterranean food 😩! Typical for me, as my senses started to return on the last day haha.

Also, as you know from my previous post, I was at A&E for the first day of 2020 due to chest pains and breathing difficulties which took almost a month to settle down. Until now there has been no real diagnosis, only put down to Lupus/pleurisy causing all of my symptoms (chest pain, arm tingling and pain, difficulty breathing). All tests returned normal and clear (ECG, X-Ray, CT scan), so there was not much the doctors could do but to let me ride it out. I had a sick note written up and was off work for 2 weeks to recover, those two weeks I stayed at my parents house for Harvey and I to be looked after by them (thank you Mum & Dad ♡). I have since made a full recovery from whatever that was!

Since that dramatic episode, a few things have changed with regards to my treatment / medication and specialist consultant, so lets update you all on my current situation. 

My Protein Creatinine Ratio (PCR)

On the 31st December 2019, my PCR which is a test to measure how much protein is leaking into my urine (this is taken from a small urine sample) was at its highest recording of almost 600mg of protein found in one sample tube of urine. Just to put it into perspective, a normal person should have less than 15mg. Once you hit over the 300mg mark that’s when you are seen as someone with a kidney filtration problem within the ’nephrotic range’, although anything over 100 is already a substantial amount, raising alarm bells for further investigations. Clearly the combination of medication at the time was not working, as much as I’d of liked for it to be the solution for me as it was also pregnancy safe, it just wasn’t able to control my protein leak. The next option was a much stronger immunosuppressive medication usually used to prevent organ rejection following a transplant.

As of 31st December 2019, I began my journey (again) with Mycophenolate. Yes I have tried this medication years ago, it was not long after when I had my first pericarditis episode, wether it was down to the medication or not we’ll never know. However that wasn’t the problem I had with this medication, I just hated taking the tablets. They are huge and get stuck in my throat, also this is a twice a day medication – often I would forget one dose as I’m so used to taking all of my medication once a day (as I’m writing this, I have just realised I need to take my first dose!) so I didn’t benefit from this medication fully in the past. 
This time however is more serious, now that Lupus is affecting my kidneys I need to focus on fixing this before it goes too far and damages my kidneys (which would be irreversible). I have been consistent in taking this medication every day, twice a day for the last 3 months and I am already seeing positive results. Slowly but surely my PCR readings have been reducing in number, the last reading being 325mg at the end of March 2020, which is almost half since December. This is a very reassuring result and the plan now is to get my nephritis and Lupus into remission, then hopefully wean off this new medication so that we can start planning baby #2. So for all of you who keep asking me when’s my next, there’s your answer. There’s nothing I want more than to provide you all with another beautiful baby to ‘like’ photos of, but right now it’s just not possible. So hang tight guys, I’m working on it!

Prednisone – the wonder drug

AKA steroids. I call this the wonder drug, as it seems to be the medication everyone gets put on to fix all kinds of problems. It is however only supposed to be a temporary, short term fix as there are long term, sometimes irreversible implications. For me, it is something I have taken since my diagnosis in 2011, almost 10 years ago. The majority of the time, I have been on a low dose of 5mg a day, in times of flares this will increase but be brought back down fairly quickly as the goal is always to get off this type of drug.

Currently, I have been on Prednisone 20mg a day since October 2019, this is quite a long time for me and since January I have been experiencing a new symptom from this which I will talk about in a moment. Firstly, I’ll talk about the most obvious and common symptoms:

The usual weight gain and prednisone ‘moon’ face have been present since not long after I started the higher dose, that’s a given and something unavoidable when on steroids, I know this will return to normal afterwards so I try not to dwell on it too much. However currently I am double chin galore and can’t find the right angle for photos, so you won’t be seeing a lot of my face on social media until it’s back to normal 😆. I have gained around 1.5 stone since starting this higher dose, it has taken me a lot of will power to not eat everything in sight (I could of gained way more if I lost total self control), as this medication just makes you want to eat and snack every 5 minutes. It will also take a lot of will power and hard work to get rid of as weight loss is not in my genes, however coming off the medication will help jump start this itself usually. The moon face will also fade as the Prednisone slowly reduces. Here’s some comparison shots of my face, first set is October 2019 – December 2019, second set is September 2019 – January 2020. I tried to find photos taken in the same angle and expression to give a better comparison for you all. As you can tell, my face is wider and cheeks are more rounded, but you can still make out my signature pointy chin just about! I also would have a huge double chin if the angle was slightly lower – surprisingly I tend not to take photos from these angles 🙃.

Cushing’s Syndrome – Another new diagnosis

I first noticed symptoms in January. I noticed stretch marks appearing on the inner sides of my legs and thighs. These have only gotten worse and are now more visible extending from the bottom to the top of the inside of my legs. I have also gained stretch marks on my back, bum and armpits (weird right, who knew that was even possible)! Another symptom I have been experiencing is high blood pressure (BP), this is unusual for me as my blood pressure has always been on the lower end. Then one day it jumped to be in the ‘high’ range (it was 152/108 to be exact, on 10th Jan 2020 – just a week earlier it was considered low, which was my normal) and it really scared me. My doctor advised me to buy a BP machine to keep an eye on it, which I have done. It still remains much higher than my normal, but within a normal persons range, so I am OK for now.

After speaking to my friend who also suffers from these symptoms, she helped me realise that I could possibly have Cushing’s Syndrome, something I had never heard of. I mentioned it to my consultant who has confirmed that I have developed this as a result of long-term high dose prednisone, but has assured me this will revert back once I reduce the medication. Yep another one to add to the list, I hope I get a reward for checking off so many conditions 😆.

Cushing’s syndrome occurs when the body is exposed to high levels of the hormone cortisol for a long time. Problems this can cause are Osteoporosis (bone loss/brittle bones), type 2 diabetes, high blood pressure, infections, loss of muscle mass/strength. Most of these are also a side effect of other Lupus medications and / or Lupus itself, so sometimes it’s hard to figure out the cause when so many things overlap.

See below for photos of my stretch marks to show you what I’m talking about:

Unfortunately the stretch marks are here to stay – I will continue to bio-oil the life out of them, but the stripes will never fade fully. On the plus side, this Cushings will go away once I lower my prednisone dose. Just last week I have been allowed to reduced to 15mg a day following the good news of decreased protein leak, which I have been so excited about. I can’t wait to get back down to 5mg or to stop all together which is of course the aim of it all, and to have my body and face back. First things first though, get my kidneys under control – then deal with the rest.

A new specialist referral

As my Lupus continues to increase in complexity, the team of consultants looking after me decided it was best to refer me to a more specialised Dr of Rheumatology who has more of a specific focus on Lupus. I met this Dr in January and she is absolutely lovely and seems to know her Lupus stuff. As I’ve said before and always will, I am forever grateful for the care I receive at the hospital through the NHS. With what started off with a doctor is now a whole team of different departments looking after me, I have been told many times that my case is reviewed in their weekly meeting about the most complex cases and what to do about them – I guess I feel special? The consultants, doctors and nurses have gotten me through almost 10 years of Lupus and are continuing to find the best treatment specific for me. It looks like things are on the mend on my end, so lets hope this continues 😊.


That’s all for this update, I’m sure unless you live under a rock, you are all aware of what is going on around the world with regards to a particular virus. I just hope everyone is staying safe and social distancing properly so that we can get back to ‘normal’ as soon as possible. Being extremely vulnerable myself, it is a scary time and I am most definitely staying in. We will get through this, just try to enjoy this quality time you have at home whilst it lasts, I know I am! 

Until next time, keep smiling!

Ruby 


*Disclaimer – I am in no way an expert, these are just my personal thoughts and opinions.

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Emma Hayes

There I was in a hot yoga studio with plenty of bright natural light and bending myself into pretzel like positions for the very first time.

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