Lupus through lockdown and Lupus awareness month
Here is my story of my experience of Lupus through lockdown of finding a balance between being seen and treated, staying safe and not bothering the doctors too much.
For the longest time, I have felt at ease with my Lupus. My main issues had always been fatigue, rheumatoid arthritis, Raynaud’s phenomenon and a butterfly rash on my skin. I felt content with my treatment and well controlled.
It is always mind blowing to me how I can feel OK, yet my blood markers and urine samples tell a completely different story. It’s one of the crazy sides to Lupus and other auto-immune conditions. It’s invisible not only to the public eye, but it also is to me half of the time. To know that it is affecting my kidneys is so terrifying, however not being able to see or feel the day-to-day struggles of my kidneys is the most scary part. As it is not something visible or physical to touch, I often forget what’s going on inside, it gets pushed to the back of my mind. Then round comes my next consultation and it brings me back to reality. A reality that my kidneys and possibly other organs are not functioning properly. A reality where my future health is unknown, how long I have until it gets worse, how bad will it get, will it even get worse (probably!)? So many unknowns that absolutely no one can answer for me.
To be honest, the way | feel right now is the most I’ve every worried about my future with Lupus. It just feels as though it’s one thing after another. My desire to have another baby feels like it’s getting pushed one step forward, 2 steps back, or possibly it will not happen at all. This is something, if it happens, that I will have to learn to accept. I am extremely grateful to even have one baby boy and for him to be an awesome little dude, I couldn’t be more proud of him and his growth into his big personality.
So a little update since my last post in January where I spoke about battling the nausea I had been experiencing from a new medication I started, Tacrolimus. Amazing news – the combination of Tacrolimus and Azathioprine are working extreamly well. It has significantly reduced the protein found in my urine and kept my kidneys stable. The nausea has mostly gone, I still get bouts of it but nowhere near as bad as before.
The other good news is that it is safe in pregnancy, which gives me hopes and dreams of having #2. A medication that works well with me, AND is safe in pregnancy, I hit the jackpot! It has been 3 and a half years of trying to find the right combination of medication to stabilise my nephritis and get my body ready for pregnancy. I have already spoken to the fetal medical consultants, my rheumatologist and nephrologists way before covid started about this. They all are aware (however not exactly that keen) of me wanting another baby. They say they have been traumatised from my last, but will do everything possible to help me have amother successful, healthy baby. So long as my Lupus is in a stable place, they are happy to go ahead.
Something I haven’t spoken about on my blog, is that I have been suffering from a fungal nail infection affecting my right thumb only. It began in October 2019, I had been told it would clear itself and not to worry. I spoke with my GP also who prescribed me with a topical nail lacquer called Amorofine, this didn’t help at all.
I won’t upload a photo as it’s gross, but it basically looks like the top half of my nail was completely white (like the tips of your nail).
However in March 2020, it began to turn a black colour, I immediately saw the nurse at the walk in, who told me it will grow out and not to worry. Due to lockdown I hadn’t been able to see my consultants, all face-to-face consultations had been cancelled in place of phone and video appointments. I explained in my next couple of telephone/video appointments about my nail, however as they are more concerned with my kidneys and lupus, and I was not in any discomfort nor was it spreading, it was not a priority.
In January 2021 I contacted my GP who spoke to me via telephone, I gave nail clippings in for testing and didn’t hear any results back, however they did prescribe me with a drug called Terbinifine, this also didn’t help.
As with everything going on in the pandemic, I didn’t want to bother the doctors or nurses with something I believed to be minor. It wasn’t until May 2021 after having my first face-to-face appointment with my Rheumatologist that I finally got a referral to dermatology and my first appointment received in July 2021. The dermatologist said that the clippings from the GP didn’t show what sort of infection I had, therefore they took another sample which after a month we received the results. The original medication from the GP was for the wrong type of fungal, I took that for a good 4 months for no reason, on top of that it could have affected my liver as that is one of the side effects. Who knows eh!
Anyway, now I am on the correct treatment, I am currently 3 weeks in an so far I do think it is working. The only downside is that this new medication called Itraconazole interferes with Tacrolimus, and has significantly increased the amount in my blood stream which has in turn reduced my kidney function to below 60%. We are working to balance this out, so I have reduced my tacrolimus to counter this, it is too early to tell if it is enough, we may have to reduce it more in future. But I’d say it’s a win? Hopefully the reduced kidney function is just a temporary issue fingers crossed!
Apologies for this ridiculously long post, it has been a long time since I wrote an update so there is a lot to take in.
To summarise: I seem to be on the right track towards stabilising my kidneys, stabilising my Lupus and on the path to possible being able to have another baby. For now I will enjoy and appreciate what I have, that is my awesome baby boy, amazing family and friends ♡
If you have any questions regarding my Lupus, treatment or anything else do not hesitate to drop me and email, or DM on instagram. I will do my absolute best to reply, I love receiving your messages and knowing my blog is helping other people out there.
I will end this post here with a photo of Harvey and me 🙂 I hope you enjoyed reading!
Speak soon & love to all,