January 20, 2014
Hooray, hooray, HOORAY! I’m off prednisone as of TODAY! Cross your fingers this lasts a while. Or, forever.
Sadly, it could not last. Back on 5 mg. :(
January 12, 2014
So I’m back on prednisone, which is annoying. Right now I’m taking 10 mg, but I was taking 15 mg for a couple weeks. About a month ago a pretty bad flare-up started in both feet and ankles–especially the right foot and ankle. Swelling and terrible, throbbing stabbing pain. I’ve been trying hard to resist taking steroids because of their nasty side effects, and because I’ve been trying very hard to lose weight. But, once again I felt I had no other choice than to take prednisone temporarily until the flare-up is gone. The drug has been helping, which is great, but it’s also been affecting my moods and causing me to have a raging, ravishing appetite. I want to stuff my face with every carb I see, basically. This is frustrating and depressing.
I wrote more about this in a blog post for RheumatoidArthritis.net which hasn’t been published yet (soon, hopefully). In it I ask for tips and suggestions about how to cope with the side effects of prednisone. How can I control my appetite better while taking this wonderful yet awful drug? I’ve been trying to drink a lot of water and tea which is helping, sort of. I’m not sure what else to do other than, yeah, taping my mouth shut. But when a pasta/bread/sugar/chips craving pops up, I’m not sure if I could stop myself from ripping it off anyway. Lock me in a closet instead? Chop off my hands? Joking aside, those aren’t realistic options, of course. Anybody have any good ideas? Please tell me soon, before I clean out the fridge…again.
October 23, 2013
Last night I happened upon a fascinating and frightening documentary on Frontline about the rise of certain types of deadly drug-resistant bacteria (also known as “super bugs”). While this is a major concern for healthy people with normal immune systems, it’s an even bigger one for those who have auto-immune diseases and compromised immune systems, such as RA. It’s not just the fact that these certain types of bacteria are resistant to antibiotics, but the gene mutations that are seen to occur in people to transform “normal” bacterial infections into these super bugs–that’s what’s even more terrifying. Watching and listening to the stories of the people who became infected with these super bugs made me shudder, Wow if I get one of these I’ll survive about five minutes. OK that’s probably an exaggeration, but if these infections are ravaging and killing healthy bodies, I can’t imagine that those who have weak or compromised immune systems could survive them. Or can they? It’s a question worth finding out, I think. I also found it disheartening and rather appalling that the drug companies are not very invested or interested in working to create and bring to market new antibiotic treatments to treat these super bugs, according to the documentary. Why? Spending millions (billions?) of dollars on developing and marketing antibiotics isn’t very profitable because antibiotics are intended only for short-term use, compared to say, cholesterol medication you take every day for years. Or arthritis drugs which are also taken on a daily basis for a long time (imagine that!).
Anyway, this is an excellent documentary and I highly recommend watching it. Here’s the link:
Hope you find it interesting, and please feel free to comment!
February 13, 2012
Monday morning. I’m still trying to taper down on the prednisone – at 10 mg now. My ankles feel a little better, surprisingly. I hope this isn’t just a fluke. Too many pills; no wonder I always feel like throwing up in the morning. I suppose I should try to spread out taking them but then I’d probably forget. I’ve started taking plaquenil again too. I had kind of “decided” on my own to stop taking it. Well, it was mostly laziness and forgetfulness that decided for me. I’m determined to get these ankles better so I can take a trip in June. If that means choking down all of these pills then I’ll do it.
February 4, 2012
A lot has been going on lately with my RA and I really haven’t wanted to talk or write about it. But, I suppose I should give some sort of an update. I’m still on the evil prednisone, but I’m starting to taper down as of today. I saw my rheumatologist last week and he increased the dose to 20 mg (I think I was on 10 for a week or so) for a week and then told me to call him, which I did yesterday. My flare-up has definitely improved since starting the prednisone again but I’m still having pain in both ankles. After speaking with my doctor’s nurse yesterday afternoon, she relayed the message that I’m supposed to start tapering down to 15 mg for four days, then 10 mg for four days, then call the office again. She said that since I haven’t seen a lot of improvement increasing to 20 mg that I should start to taper down. That’s certainly fine with me – I hate being on the stuff. However I’m willing to put up with prednisone’s nasty side effects or just about anything else to make the flare-up and pain go away. My Remicade I.V. infusion was also last Friday so hopefully that will start to kick in.
January 18, 2012
Wow I haven’t posted in nearly two months – sorry for that! Things have been crazy and busy and…challenging. I’m still recovering from my ankle surgery in October and I’ve actually been suffering through a pretty bad flare-up for the last 2-3 weeks. BOTH ankles have been really painful making it difficult to walk or be on my feet much. My hands and wrists have also been bothering me during this time, so I’m fairly confident it’s the RA flaring up and not something else. But who knows. My next Remicade infusion is Jan. 27th so hopefully that will help get rid of it. I also finally managed to speak with my rheumatologist’s nurse today and she told me that my doctor wants me to go on prednisone again for the next couple weeks until I see him on Jan. 26th. Great, PREDNISONE. I’ve been trying so hard to stay off this drug; I haven’t taken it since August. Before that I was able to be off of it for an entire year before a bad flare-up forced me to go back on it again. The thought of taking it now is very depressing and makes me feel anxious and kind of sick inside. But what can I do? The pain and swelling in my ankles is driving me crazy – it can’t go on like this.
November 29, 2011
I had my Remicade infusion yesterday and it went fine, as usual. And it was boring, as usual. There was a young girl in the “infusion bay” next to me who was watching TV and had Ru Paul’s reality drag show blaring. So annoying. There was a young guy in another bay blabbing really loudly too, which was also getting on my nerves. If I have to sit hooked up to an I.V. for three hours I’d prefer it to be quiet, but eh, what can you do? I had planned to read a lot more of my book but instead wasted a lot of time playing with my new iPhone. So addictive! That’s all I have to report, really. I’m glad the infusion is done until the next one in eight weeks. Then I’ll have to start fighting with my insurance company and deal with the stress of getting financial assistance for the year. My insurance “starts over” January 1st AKA turns to crap. I know I shouldn’t complain though because at least I have insurance. I can’t imagine what it must be like for people who have RA or other chronic illnesses who can’t afford insurance. It’s criminal, really. I end up paying a ton in out-of-pocket costs, but I’d be so far in debt if I didn’t have any insurance.
Ah, what else is new? I drove again tonight for a bit. Exciting! I also have not taken any pain medications today, although I might have to pop a Percocet before bed. Ok, I’m going to go watch a movie or something.