As I’m quickly learning, nothing with Lupus is ever straightforward. I’m not yet completely familiar with all the different Lupus treatment options but I can explain my treatment plan and what the next few months look like for me.
Initial Treatment
The first thing the doctors wanted to do when I was admitted was control the inflammation in my body that was attacking my joints, muscles and organs. This is done using steroids, combined with strong pain relief such as morphine. Because my inflammation levels were so high, I needed a 500ml IV hit for three days. As anyone who has ever had to take steroids will know, they are HORRIBLE. I swelled up to the size of a whale; my arms, legs and tummy inflated like the michelin man. They make you very hot – perfect for summer days in hospital without aircon – and they make you very emotional. My body was so incredibly tired but I could not sleep a wink. I am not exaggerating when I say I only had 4 hours sleep over those first three nights, even with sleeping pills! I have the amazing nurses and my wonderful family to thank for pulling me through the steroid turmoil.
Gradually my steroid dose is reducing. Intially to 40ml orally which is still considered a very high dose to be on, and now down to 30ml a day. I will probably be on steroids for the next three to six months so have a few months of side effects ahead of me. The most common of which is the steroid hunger, giving you an insatiable appetite, potentially leading to weight gain. Another side effect? The ‘moon face’. All things you want in the lead up to your wedding…
Joking aside, it’s a worry for me as the wedding gets closer. I am terrified of losing my hair or developing the typical Lupus skin rashes across my face. I am scared I won’t fit in my dress and that my face will look puffy and pale. The doctors have promised me they will do their very best to avoid this, and October gives us all something to aim for. As my friends and family are slimming down and looking amazing, I have to concentrate on being well, being able to walk, and getting down that aisle! But really I’m a lucky bride in that months before the wedding I’ve had the stark reminder that the MOST important thing is that I get to marry my absolute hero and rock. It’s one day out of a whole lifetime together. The rest is just vanity. I have to accept that steroids are part of the life saving treatment for severe active Lupus.
Treating the disease
While steroids are great at treating inflammation, they don’t actually treat the Lupus. Before treatment can start, the damage to organs has to be assessed and stabilised. As Lupus is linked to hormonal activity in your body, organs such as the uterus and ovaries should also be given the all clear before treatment starts. Because I had lumps in my breast tissue, I also had to visit the breast clinic before given the go ahead.
The most common treatments for Lupus seem to have been discovered by accident rather than developed specifically to treat the disease (but more about that later!). Here are some of the treatments I am on.
Anti Malarials
This is generally one of the first lines of treatment for someone who has been diagnosed with Lupus. It is used for skin and joint involvement, muscle inflammation, fever, fatigue, pleurisy, to reduce the development of kidney disease and chronic damage, and for its steroid-sparing properties. It is one of the few licensed drugs for Lupus and there is good evidence for its efficacy and safety. This drug is actually an anti-malarial drug but is great for treating Lupus. I was put on this a few days after my diagnosis and am having my dose gradually increased as my body gets used to it. It can cause damage to the retinas though so I have to make sure I have regular eye tests. Other side effects are that they really affect your stomach so I also have to take a gastro-protection drug called Lansoprazole. My stomach hasn’t been too bad so far but the hydroxychloroquine makes me very naseuous, sick and wobbly on my feet. They also taste vile!
Immunosuppressants
For severe cases of Lupus, immunosuppressant treatment is required. For me there were two options; the traditional immunosuppressant called Cyclophosphamide, which is given by IV infusion or a newer drug called Mycophenolate Mofetil (MMF) which is also used to prevent rejection in organ transplants. Cyclophosphamide can lead to fertility problems so this really wasn’t a route I wanted to go down. Instead, we decided to try MMF. The only problem with MMF is that it can lead to severe birth defects and miscarriage so I have to be super careful not to get pregnant while it’s in my system. Clearly not something on my mind right now, but Henry and I have always hoped to have a family together. Taking this drug will make those plans slightly more complicated in the future, but not impossible. I’ll do a proper post on Lupus and fertility down the line but for now, it’s not just getting to grips with Lupus that’s been hard, it’s also having to make key decisions about my fertility and future with steroid induced brain fog from my hospital bed!
As I start this drug I will be closely monitored in clinic a few times a week to make sure my liver isn’t affected and to see if my antibodies start to come down. All being well, gradually my dose will be increased and my steroids can start to be reduced. In reality it can take up to 12 weeks for it to properly enter your system and start treating the Lupus. That’s why I have to stay on steroids for so long.
Pain
Pain has been a part of my life for months now, but for the first time in a long time I can say it is under control. The steroids have had a transformative effect on my joint pain, and the swelling has really come down. I can actually fit my engagement ring on now! I still get the odd twinge, especially in my hips and knees. I also get a lot of chest pain because the joints in my ribs are inflammed. I’m not allowed to take ibuprofen but I find a couple of paracetamol in the morning and evening takes the edge off.
Life with Lupus is going to involve a lot of learning how to manage chronic pain so I know there’s a long road ahead. But for now, I’m enjoying being virtually pain free and am saying a big thank you to the doctors and medication for making that change happen. Maybe steroids are my new best friend after all?!
Livin' La Vida Lupus 