Ok, here goes. This is a picture of my bed, with all the things I am about to pack. You see some clothes, and you see lots of other stuff.
My heated throw. Essential for flare days! Even though I am going to a warmer place – the temp should be around 27 degrees C (about 80 degrees F) when I flare I need heat to soothe my joints. And overnight, no matter how warm the night, I need heat to sleep. Its kinda bulky. It takes up space.
Then there’s my heat packs. Two wheat bags minimum. One to strap around my lower pack and hips and one to hang over my shoulder which is always painful these days. They are heavy, and pretty bulky too. (I also need to be sure to book a room that actually HAS a microwave to heat these babies up!)
There’s my walking stick. It collapses nice and small…even fits in my handbag. But it all takes space.
Then there’s my wrist guards, knee supports, shoulder support ankle supports…I have more but these will do.
There’s still some room for clothes, right???
Now on to medications.
Where do I start? Lately I have been on my usual Rheumatoid Arthritis medications, plus a whole pharmacy worth of medications to deal with side effects of the other medications, or co-morbid conditions of RA.
So firstly, Plaquenil. A very mild DMARD. Doesn’t do much on its own, and is only prescribed on its own for very mild cases of RA. But it increases the effectiveness of the other DMARDs it is usually prescribed with, like methotrexate and sulfasalazine. Until recently I was taking methotrexate, but no longer.
Naprosyn. An NSAID. Non-steriodal Anti-inflammatory. I don’t get out of bed without Naprosyn. Recently I switched to Arcoxia, and although I thought it was effective, the side effects of gastro and mild depression make Naprosyn a better choice. So I returned to that. I can also up my dose of Naprosyn to above the maximum recommended dose. (1500mg per day). Just to get me through the next week. While that’s hard on the kidneys and stomach, my kidney function has bounced back, and I always make sure there is food in my stomach before I take Naprosyn.
Nexium. To further protect my stomach. A few years ago I had an ulcer, confirmed by an endoscope. A friend once told me you can’t take NSAIDS after having an ulcer. Bullshit. You take them carefully and monitor them, and protect your stomach with more medication. If your inflammation is mild, the risk of ulcer is greater, so doctors won’t give you nsaids. If your inflammation is SEVERE however, the inflammation is the greater evil, and you need the nsaids.
Prednisone. All, our beloved pred! It helps so much, but I am tapering off because it is destroying my eyesight. Down to 9mg and holding here until after the holiday. Silly to taper down while away.
Eyedrops! I no longer need the steroid drops, but I need to put the Hylo-fresh in my eyes several times a day to keep them moist now. And the Vita-Pos in every night. It’s a gooey, yucky gel, but it moisturises my eyes brilliantly and they feel much better. I’ll need to take these forever because I am prone to uveitis and I have sjogren’s also.
Enbrel! The big guns – biological DMARD. Injectable…nice handy auto-injector pen. Once a week. Every wednesday. Forgot to put it on the big picture…its always in the fridge!
Metformin. Not for arthritis. I am pre-diabetic so I take three of these daily.
Lamisil. Anti fungal. I have a fungal infection of the skin and my nails as well. I have to take this for several months to get rid of the infection. Enbrel lowers my immune system so much that if the fungal infection is spreading. This drug can be hard on the liver, which is not good, but the infection has to go. Or that’s what my rheumy told me.
Until recently I was on anti-biotics for the chest infection. I am over that now.
Diazepam (valium). Muscle relaxer and anti-anxiety. Why do I get anxious? I have to remember to take all these meds! LOL.
Endone (oxycodone) Strongest oral pain killer available. Opioid/narcotic. For break through pain.
Targin (oxycodone slow release). I take one morning and night to keep pain under control. Its better to keep it under control than let it get so bad that no amount of drugs will manage it. Or so I’m told.
MS Contin. Oral morphine sulphate. Not as strong as oxycodone, but I switch these up sometimes, just to help with opioid tolerance.
Metoclopramide – to deal with the nausea from all the opioids.
Coloxyl. A laxative to deal with the constipation from all the opioids and the Naprosyn.
Vitamin D – because I am always deficient. I think most people are tho.
These are JUST the prescribed medications that I am supposed to take daily. Some, like the diazepam are ‘as needed’. But mostly, this is every day.
I think you can all see why I needed to STOP everything for a while. ALL of these drugs can really mess with your head! And your body. They can’t possible test for all of the interactions…and side effects. But these are necessary right now. Without them I do not move. I have dropped methotrexate and Arava. And switched out Arcoxia.
This is my routine. This is just the meds I need to pack for a short trip away. They look a lot better like this:
In my daily dose packs.
Then there is still all of these to pack.
I also take fish oil and vitamins. But its just too hard to add those pics in too! I think you get the idea…Its a pain in the…
I hope you have an excellent trip away. 🙂
OMG- and I thought I was the only one that rattled when I walk. Xxxx
I havent posted for ages but I had to laugh when I saw your ‘holiday basics’ I too almost need a pack horse to help carry my daily essentials when travelling. Im lucky I have my husband and two boys to carry the gear and they just let me shuffle along behind them. Last time I posted I was just starting on Arava. It didnt work. I dont think there is anything else I can say about it. I have just started Actemra infusions and so far I feel hopeful that they might be working. My rheumy was great and basically let me read all the info and choose which one I wanted to try. I will give you an update once I have had a few more infusions. Enjoy your holiday and the time away with your lovely kids. Kids never mind that if youshuffle or cant play contact sports, hugs and love are enough.
It’s not a poor man’s disease!
Even though it costs us a small fortune each month, we cant go without ANY of these drugs 🙁