I am now on so many medications that I honestly cannot remember what they are all for, or even when I am meant to take them. I have finally succumbed to buying a daily tablet holder, something I have been putting off for a while. This way at least I wont forget which tablets to take and when, plus I don't have to carry around different boxes all of the time.
So what medications am I on? As with anyone with an autoimmune disease I need a combination of different drugs to manage both the symptoms and the disease progression. For me, as with many of us, I tend to think only of the ones that take away the symptoms and tend to blank it fro my mind that I will have to take tablets for the rest of my life. For this post I will cover DMARD's (Disease Modifying Anti Rheumatic Drugs), NSAID's (Non - Steroidal Anti Inflammatory drugs) and Steroids. There is of course the dreaded immuno -supressant chemo medications, as they deserve a whole post of their own.
Each of these medications has it's own battery of side effects that you may or may not experience, some of which need to be monitored by your specialist. So I have been collating a list of the side effects I have experienced for certain drugs and how to tackle them if they do arise. I need to state, there will be no medical advice here and if you experience any side effects you should always mention them to you doctor!
NSAID'S - Naproxen
Oh the good old Naproxen, sometimes you are a god send and sometimes I curse your name. Naproxen is an anti inflammatory that I take 1000 mg of a day. It was first prescribed to me at stage one of diagnosis; as soon as my swollen ankle presented itself this is what they gave me....although at a much lower dose.
At first I didn't experience a lot of unpleasant side effects, but once they upped my dosage....hello heart burn. Oh my word I have never had such bad heartburn and I know you will be sat there thinking "take some antacid and get on with it", trust me it was not as simple as this. With any cocktail of drugs, there are some medicines that you just cannot take together and my disease modifying drugs meant that taking antacids was out of the question. So writhing in agony in bed I decided that I had had enough...I mean what kind of painkiller causes more pain....crazy!
So I turned to the only remedy I could think of....a good glass of milk. As milk soothes and lines the stomach I felt this would be the best thing to try. I started to take all my medications with a glass of milk too, just to see if that would avoid the burning. Now, many of my medications can only be taken with food but when you have heartburn eating is the last thing on your mind. To combat this I started dunking a small amount of bread or ginger biscuits in a glass of milk before I took my tablets. Since then I hardly experience any heart burn at all.....try it, it seriously works!
There are also some drugs, such as Lansoprazole that can help if you are desperate, so speak to your specialist if this is the case.
Hydroxychloriquine (Plaquenil)
DMARD's are an evil necessity, they are the drugs that keep our disease in check and help us with the symptoms. They help to keep flare ups at bay and get your immune system to try and do what it is designed to do...rather than attack you! As you can imagine though, they are not the most pleasant of drugs, they are strong and fairly toxic. It is because of this that they come with a whole host of side effects and hydroxy is no stranger to these.
when I was first put on Hydroxy I was literally terrified, I mean, a drug where you actually have to go in to see a nurse to go through the side effects.....that doesn't sound good! Although I understood the necessity of them, I didn't want to take something that would make me feel terrible on top of all the other symptoms I had. So, we had the chat about the drug, what it does and the glorious side effects including the fact that they can (in some cases) ruin your eye site.....oh dear what have I got myself into here. Then I was handed the prescription and sent home to start taking them.
And then this happened.....sat at my desk at work, having a meeting with two colleagues and I get tunnel vision in one eye and blurred vision in the other. I tried to hide it as best as I could, but eventually I had to tell them that I simply couldn't see my computer. Needless to say, for around 45 minutes I was so afraid that my vision wouldn't come back that I forgot about the pain....maybe this is how they work? Eventually though it went away, leaving me with a blinding headache and nausea. I stayed in work, but my head pounded for the rest of the day and needless to say, I didn't want to take any more. It's bad enough being afraid of the disease, now i have to be afraid of the medications too....perfect!
The first thing to mention here is that when you take these kinds of drugs, including Methotrexate, you need to be monitored to make sure that you are not going to have any lasting damage from them. So don't be alarmed if you have to have many eye tests, kidney/liver function tests and full blood counts. This is normal. So once I had experienced that first wave of blurred vision I rang my specialist nurse straight away, she explained that this is very common and booked my in for a check up. Since the first time, I have experienced this over and over again, sometimes lasting 30 minutes and sometimes for hours. It's scary and the headache is horrendous but I have learnt to cope with it.
Starting with lying down. A couple of weeks ago I work up to double vision, all I could do was shut my eyes and wait for it to pass. Don't beat yourself up about this, it happens. On top of this, avoid caffeine, it will make it so much worse...drink lots of water, shut your eyes and listen to some music...works every time for me.
If you happen to experience this out and about, then DON'T PANIC!!!! take some refreshing deep breaths, buy a bottle of water and excuse yourself for half an hour. sit down somewhere comfortable and tell someone what is happening....being dizzy in public can be scary, so let someone know.
Prednisolone
Oh the Steroids....who doesn't love the steroids....joking. This is the one drug I did not want to take and for a long time I didn't, even though I was in agony. I think it was the mental idea that steroids will make me put on weight......I know that is the least of my worries, but I still want to look as nice as I can do....don't we all?
My dosage right now is very high, I had a flare up, so the dose was upped and I have had a mixture of prednisolone injections and the 3 times a day tablets. Luckily I have a friend who has had to take a similar dosage to me, so I could pick their brains about what to expect.....and I did not like what I heard. Water retention, itchy skin and weight gain.....perfect! But they had to be taken and I had to live with that, however I wasn't expecting the hunger and swelling to start within 2 days.....oh I was soooooo hungry I would eat anything.
Combating the hunger, making sure I was still healthy and avoiding water retention became my goals in life....sad but very very true. I am a curvy girl, who enjoys fitness and healthy eating...then all of a sudden I turned into a steroid filled eating machine, craving sweets and chocolate like I was pregnant. Seriously, if I ran out of chocolate I would cry. Something had to change before I lost even more confidence than I already had and my first battle was against water retention. To be exact it was against the swollen tummy, ankles, feet and hands.
The only cure I have found for extreme water retention is....drinking more water! It sounds counterproductive, but to flush out the water that is being retained I needed to turn to more water, cutting out caffeine, salt and adding in fresh lemons to my water. I upped my intake from 1 Liter a day to around 2, drinking more after meals and first thing in the morning. Salt is also terrible for water retention, so I limited this as much as possible.
Then there was the hunger...this was the tough cookie to crack...cookie being the best word here. The answer was simple, I needed to swap the sugary sweets for fruit, it didn't sound as appealing, but it needed to be done. I also added in snacks like seeds and low fat yogurts, helping with the bloating as well as the hunger. I started to keep track of what I was eating, so that I could see the times of day that I was hungry and when I would bloat up like a balloon. This gave me a better insight into my eating habits.
There are so many other side effects that I am working my way through trying to battle it out with....nausea, stomach upsets, relentless mood swings. Because of this I will be doing a follow up post looking at other drugs I am on, like Amitrityline, and their effects.
