Taper time

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.

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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.

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A lot of things have been happening regarding my RA, and well, with everything really. I’m having surgery on my right ankle again on October 31st (I hope my surgeon doesn’t play any “tricks” on me in the operating room). It’s the same surgery I had five years ago – the doctor is going to scope my ankle to try to see what’s going on in there. Like last time, I have a feeling that he’ll also end up removing inflamed synovial tissue. The frustrating thing about my ankles, the right one in particular, is that nothing ever shows up on the MRIs and X-ray scans yet I continue to have debilitating pain and swelling. As the surgery date gets closer, I’m starting to get more nervous and scared, but I just hope the surgery is more of a success than it was last time. I had my pre-op physical yesterday and I’m good to go. Whoohoo! Happy Halloween, eh?

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Relief

March 25, 2011

I’m so happy.  This flare-up seems to be getting better and WITHOUT being on prednisone!  I could cry I’m so relieved.  I hope it will totally go away.  I think I’ve lost a tiny bit of weight, too.  Patience is very difficult sometimes.

FLARE-UP

July 21, 2010

Rheumatoid arthritis is such an obnoxious, sneaky disease.  Example:  I went to bed perfectly fine last night (well, my normal “fine” that is).  This morning I was cruelly awakened by a sharp stabbing pain shooting through my left knee whenever I moved it.  My initial thought was, oh no…not this again.  I had had this happen once before when I had to go to the E.R. because the pain was so intense.  Luckily this morning I was able to carefully roll out of bed without passing out from pain.  I hobbled into the living room and noticed that my left knee was swollen compared to my right one.  So now, here I sit writing this blog with a bag of frozen peas icing my knee while I wait for my rheumatologist’s assistant to call me back about a plan of action.  I’m pretty certain that the doctor will order me to go back on prednisone.  Hopefully I won’t have to go into the clinic today.  This flare-up is especially frustrating because today would be Day 3 of me being prednisone-FREE again.  I so badly want to get off of that medication and STAY off of it.  I’ve been tapering down/off for the last three weeks.  If Dr. B puts me back on it, we’ll have to start the entire process over again.  However, I’d rather take prednisone right away if it will knock out this flare-up.  Anytime something like this happens, I get extremely nervous, of course, that damage is being done to my joint and that it will never return to normal.

Another depressing thing about this flare is that I’ve recently been enjoying riding my bike a lot.  I’ve been trying desperately to lose weight by biking but have also come to really love it and look forward to my daily rides.  I’m assuming that there will be no bike rides for a while thanks to this knee.

RA is really a jerk sometimes.  It obviously doesn’t care that I have two medical appointments I need to go to today.  Nor does it care that I also had to call in sick to work for tonight.  I know life is full of surprises and interruptions for everyone, chronic disease or not.  However I’ve noticed that my R.A. seems to get a kick out of rearing its ugly painful self in my life when it’s most inconvenient.  It’s a very helpless feeling when a disease controls you, forces you to lie around with a bag of peas on your leg when you feel perfectly fine otherwise, and stops you from doing the things you love – like those wonderful summer bike rides.

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