Lupus 2020 Lupus Nephritis Journey Update.

2020 Lupus Nephritis Journey Update.

Lupus, lupus, lupus nephritis. Where do I begin.

My last update in April I left you all on a good note that my PCR (Protein-Creatinine Ratio) had started to reduce. The amount leaking had reduced from a whopping 799mg to 325mg. Please refer to my previous post here where I explain in more detail about PCR.


Just a month later in May, in my next sample, it had gone back up to 544mg. As you can see, you must expect the unexpected with lupus, so I’m glad I didn’t get my hopes up, not just yet anyway. After increasing Mycophenolate slowly to the maximum dose, it was only keeping my nephritis stable, not improving it.

Could high blood pressure be a contributing factor to Lupus Nephritis?


It was suggested that the high blood pressure I had been experiencing is causing further inflammation in my kidneys, which in turn is causing the extra protein leak. Because of this I have now started Ramipril, a high blood pressure medication. Since taking this, it has helped my high blood pressure, but it unfortunately didn’t help with the protein leak situation.


An intervention was needed.


The doctors and I had spoken about this “add on” medication previously, this is the next step before attempting another biological infusion. If you recall, I had a bad anaphylaxis reaction to the last infusion, therefore doctors are extremely hesitant to try me with another. Especially as this new one is very similar to Rituximab. Here is a link to my first and second post talking about my infusion experience. 


Tacrolimus (Prograf)


Tacrolimus is phase 5 of the fix my kidneys plan. I have now decided to add phases to this whole tackling my lupus nephritis story as it is taking a little longer than I anticipated. I thought this may help you guys, and myself not to get lost in the journey.
Here are the phases so far:

Phase 1 – Feb 2018 – Increase Azathioprine to the maximum dosage

Phase 2 – Nov 2018-Aug 2019 – Treat with Rituximab infusions

Phase 3 – Jan 2020 – Switch to Mycophenolate Mofetil (MMF) due to anaphylaxis reaction to Rituximab

Phase 4 – June 2020 – Add in Ramipril high blood pressure medication to reduce kidney inflammation

Phase 5 – Aug 2020 – Add in Tacrolimus


I am currently taking Tacrolimus (Prograf) which is most commonly used as an ‘add on’ medication in addition to other immunosuppressant therapy like MMF or Azathioprine. It is again used mostly in transplant patients to help stop the body from rejecting an organ transplant. It works by surprising the T and B lymphocytes (white blood cells) by interfering with the reproduction of these cells. This in turn slows down the formation of new cells and therefore achieves the ultimate goal of suppressing the immune system. 


I have been on this medication since the beginning of August 2020. The first month was rough, I had extremely bad nausea, I struggled to eat much. I also had bad stomach pains, and a frequent need for a bad no. 2 (sorry for the TMI but just trying to keep it real!).

I have also noticed red blood spots (possibly Purpura) on my arms that come and go. I’m not quite sure what is causing this but it has only started since taking this medication.

Purpura (red blood spots)

I am now entering month 3 of Tacrolimus and have been slowly increasing the dose until I reach my maximum. This maximum depends on my body and how much is absorbs, so everyone is different. I have been having weekly blood and urine tests to keep a close eye on this because if there is too much in my system it could in fact damage my kidneys.


Even considering all of these side effects, after just 2 weeks of starting this medication, my PCR had halved. Yes, HALVED! How amazing is that. This is the first drug to actually have such a huge affect on my protein leak and I am relieved! Luckily the side effects are starting to settle now as my body has adjusted, I do still have the effects but a much more mild version. Lets hope this is the wonder drug I’ve been waiting for!


Alopecia (hair loss)


With stronger medication comes another side effect I haven’t yet spoken about on my blog. I have been experiencing alopecia since around May/June time. My alopecia is sparse and spread out, so if you saw me in the street you wouldn’t know any different. However for those closest to me they have noticed that my hair is thinner and there’s small gaps where you can see my scalp more. Especially when compared to my old thick, wavy hair. I think it has also changed the texture or my hair, as it is now very flat with little volume, and less curly than before. 

Here’s 2 photos I took today, as you can see I have a lot of baby hairs sticking up and at the front of my face. My hair is also falling very flat to my head unlike before it used to poof up with value and frizz.


Lupus nephritis – a roundup


That’s all I have to update you on so far for my Lupus nephritis journey. Ending this post on a positive, the medication seems to be working well. I am still slowly increasing the Tacrolimus until it is at a higher level in my blood work. Let’s hope this is it! I will leave you with this photo of Harvey and me at New Brighton 🙂

Thank you for reading, I hope everyone is doing well, until next time.

Much love,

♡ 

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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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