I’m pretty sure alone, I keep my local pharmacy in business. Think I’m exaggerating?… Look at the picture below. This is just an example of me picking up my monthly meds, in fact, some of these supplies don’t even last a month.
23 is the daily number of tablets I take and yet, I’m sitting here with a leaflet about a new drug ‘Azathioprine’ and ice packs on my swollen joints that are preventing me from walking today. Azathioprine I’m told is an alternative to the chemotherapy drug Methotrexate, which my consultant is reluctant to put me, due to the fact that if I accidentally became pregnant… I would have no choice but to terminate the baby. However, scary thing is, my blood count might mean I have no choice but to start taking methotrexate. On the bright side, I know I’m no where near ready to be popping out a family anytime soon, so we won’t need to cross that bridge for a while (I mean, we’ve not even made it down the aisle yet… jeez hold your horses!)
At my recent Lupus consultation the nurse made a joke that my blood test request form was more like a shopping list, due to 10-15 items being ticked out of a possible 20! After taking the first 10 tubes of blood from me, with the nurse chuckling “only 1 more litre of blood to go”… I couldn’t help myself think, thank god my other half doesn’t have Lupus, he would have been passed out on the floor by now! Trying to convince him just to have 2 jabs for Mexico and an annual flu vaccination was a seemingly impossible task… (he had to have a lie down for a good 15 minutes between injections before we could continue and he almost broke my hand in the process from squeezing it too hard!)
Due to the amount of medications you are on, it is important when you have Lupus to have regular blood tests to check these medications aren’t detrimental to you in anyway and to also monitor your organs functioning levels. These blood tests could be as regular as every 2 weeks for the first 3 months, so if you’ve got a phobia of needles it’s time to contact a hypnotist now!!!
At a Support Group for Young People with Lupus, I recently attended in London, I also found out that due to our Lupus and being on a concoction of pills, we should NEVER have any live vaccinations! I actually remembering arguing with my old GP about this who insisted I have one done and I got extremely ill as a result (grrrrrrr!). So if you have Lupus and you’re travelling to any exotic destinations which require jabs, make sure speak to your Lupus consultant, rheumatologist or Lupus nurse about this, because chances our your General Practitioner and local nurse won’t have a clue and will give you false information! Always make sure you ask your specialist to write a letter to your GP explaining what jabs you can and can’t have, with a list of medications you are currently on. In high risk countries you may be required to stop your medications for a few months before just to have the required vaccination.
One of the most difficult things about taking a large quantity of pills on a daily basis with Lupus, is that many people get ‘brain fog.’ Brain fog is where you start acting like you have Alzheimer’s because you can’t remember what you’re doing or what you’ve just done. On numerous occasions I’ve turned to my partner and said “What date is that event again?” he’s replied and then two seconds later…. “What date is that event again?” I have completely forgotten that I’d just asked that exact same question and quite often my partner tells me I have an attention span of a goldfish! I’m pretty sure he feels like he’s living with ‘Dory’ from Finding Nemo half the time and although that sounds amusing I can assure you it’s not when you can’t remember whether you’ve just taken your pills or not!
I’ve lost count on the number of times I’ve had to call NHS 111 to explain that I think I’ve taken an unintentional overdose because I can’t remember what pills I’ve taken… interesting conversation to have as you can imagine!!! Despite numerous people telling I would benefit from a weekly pill pot, I am yet to find one big enough for people with Lupus!
Although it might be really daunting staring at the numerous pill bottles on your shelves and wondering how on earth you don’t rattle when you walk… it’s good to know that although Lupus is a really rare condition without a cure, we do have numerous ‘options’ when it comes to finding a suitable medications to manage your condition. It’s just a case of trail and error! It is important however to remember that medications such as Hydroxychloroquine can take up to 6 months to get into your system. So hang in there!
It’s also worth noting that although you didn’t hear this from me… from my experience, being on a significant number of medications means your nights out cost significantly less, because you are pretty much wasted from the first ‘Cosmopolitan or Sex on The Beach’ you indulge in! Enjoy! xoxoxx