The Frenemy Within

RA Guy Adventures of RA Guy 5 Comments

love-hateLove-hate relationships are never good, especially when dependency is involved. They are even worse when one is talking about drugs. Last night, before going to sleep, I shared news about today’s impending reduction of my “drug of choice”. The numerous replies that I received let me know that I was not alone. (To everyone who responded to my Facebook/Twitter posts, thank you.)

This is a little bit of what others had to say: “Tapering down from 7.5 to 5mg tomorrow myself.” “I’m work’n my way down to 10mg too...” “ I just went down to 5, I was at 7. We’ll get there.” “Kick some RA butt!!” “Wishing you loads of luck and sending good good thoughts your way!” “I sure wish I could get down to that!!”  “Tapering down is hard- I just recently got completely off after starting at 20 a year ago.” “You can do it…. Wishing you lots of luck!!!” “It took me soooo long to get off of 5mg…I was doing ‘ok’ for 2-3 months then BAM…” “ After I got down to the 5mg I tried cutting them in half and it didn’t work!!” “ I have been off it now for nearly seven weeks and doing just fine!”

20, 5, 7.5, 10, 2.5, 15…what do all of these mysterious numbers refer to? No, we are not referring to some mysterious street code that must be used in order to get our daily fix. We’re talking about milligrams. Mgs of Prednisone. And it’s all perfectly legal.

But just because something is legal doesn’t necessarily mean it’s right. Don’t get me wrong, I perfectly understand the need to use corticosteroids during those times when it comes down to a choice between a)being able to move and b)once again taking those tiny-if-they-were-any-smaller-they’d-be-microscopic little pills.I have had to depend on these pills at times. But I’m reaching a point where I no longer want to depend on them.

Over the past few years I’ve done one or two tapers a year max, each one lasting no more than three weeks. Over the past few months, I’ve…well, I’ve been on Prednisone since December. Anytime I’ve attempted to reduce my dosage to 10mg or less, things have started to go horribly wrong.

Today, I taper down to 10mg.

The good news: those horrible hunger pangs will probably start going away…or, at least, be less strong. Those of us who live with rheumatoid arthritis know all too well the feeling of waking up more tired than when we went to sleep. Those of us who are on Prednisone know all too well the feeling of being more hungry after eating somethhing.

The bad news: well, I don’t want to jinx myself. Let me just say, I will get through this taper. And the next one. And the next one.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Comments 5

  1. Post

    I’d love to hear people’s prednisone stories. When I first got RA I was on 18-25 mg a day for two years. I gained so much weight people weren’t asking if I was pregnant but when the baby was due. Thanks to Enbrel I was able to lower my doses to 2-3 mg a day.

  2. FishDoctor

    My RA simmered for 20 years and I thought it was me and advancing age. I had lots of stress the last 10 or 12 years – aging parents dying, remodeling to move my 90 yr old father in, only child graduated college, got married, and moved away a thousand miles. Wham! The RA slammed me in the fall of 2008. Between Christmas and New Years it became so bad I was forced to seek treatment and the diagnosis was made on Jan. 22, 2009. Started the MTX and prednisone that day. The prednisone was like a miracle drug. Nearly instantaneous relief was followed by the news I could only take it for a few days due to pre-existing cardiovascular risk factors. First time I cold turkey and suffered a severe reaction. The next time I weaned and it worked OK. Last time I took prednisone was in the spring of 2010 I tried to do some major league hiking on the job and it flared and I had to do some prednisone.

    Because I was doing well over all we tried to cut back on the MTX just 2.5 mg/wk (I’m on 15mg/wk) and it flared so I went right back to 15 mgs. I also take four other prescription drugs and two prescribed supplements – folic acid and supplemental potassium. Additionally, I take a slug of nutritional supplements including alpha-lipoic acid, and a host of anti-oxidants to numerous to list. I am definitely gluten intolerant and try to eat gluten free although I must have a pint or two of ale or stout once in a while. It seems to be working! It has taken nearly 2 1/2 yrs but I am currently TOTALLY pain free. I thought I would never be able to stand w/o experiencing pain in my back and one knee but even that is gone. I’m going to test it again this summer and see how much I can push myself physically.

    I could go on and on but the bottom line is I’m doing ok with MTX, diet, exercise and moderation of physical activities. I can’t afford the deductible and co-pay for the biologics like Enbrel. My pc physician was only helpful when I reached crisis state and is blinded by the fact look a helluva lot better than I did two years ago from the “but you don’t look sick” phenomenon. I went to one rheumy and she wanted to put me on a daily prednisone regimen and was not sympathetic to my cardio-vascular risk. I need to get a new rheumy and have the name of one in a small, nearby town. I just haven’t spent the money yet.

    One question I have is about nodules. On your hands and wrists is expected but I have one huge one on the distal end of my left clavicle and another on the lateral side of my really bad knee and one coming on my hand. The knee I’m concerned about. Will the nodule interfere with a total replacement? I also cannot afford a joint replacement and am hoping to hold off till I’m on Medicare.

    Could go on forever. I have a journal, but have let it slide as I got better. I could go on and on but must close.

  3. Brookezlinne

    I was on Prednisone for 4 years due to kidney disease. It masked RA for God-knows-how-long. It gave me gestational diabetes, 80 lbs of unwanted weight, numerous bouts of pneumonia and lots of other things but most importantly it allowed me to bring the most amazing child into the world and stay alive long enough to be his Mommy. You hit the nail on the head RA Guy- it’s a Frenemy.

    Best of luck with your taper. I know how that feels. I’ll be happy to get off it again myself but in the meantime I’m happy it’s making it possible to walk. What do you do?

  4. Megan

    I understand the challenges of tapering, Prednisone has been a long-standing Frenemy of mine. I am stable at 5 mgs right now, and quite frankly, not that motivated to try tapering anytime soon. I seized up last year when I was at 2 mg – and I dropped 1 mg a month for 8 months. I think I’ve come to terms with my number. I love Prednisone and hate it. But it is a means to an end, it helps me live my life.

    Good luck with your taper – I’m sending positive vibes your way!!

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