June 15, 2010


Yeah, I know, we've all heard that pun before and I'm not that creative.  Add it to the list of things I'll work on improving when my brain fog lifts, ok?  Ok.  (Now if only I could find the list I already started....)

(P.S. - I've finally completed this post but it was interrupted for at least 3 separate naps, so I apologize for any lapses in continuity this may have caused.)

That being said, I just came home from the rheumatologist's for my usual 3 month appointment.  Let's review the lead-up, shall we?
  • November appointment - clean bill of health (relatively speaking, of course); conditions had been stable for quite some time (in fact, that inspired one or two previous posts).  Got Provigil worked out (a GOD SEND, truly, no taking-in-vain here), and a shot in my left shoulder cured my problems which had been preventing me from lifting and carrying things with that arm for weeks.  Last appointment before my first busy season.
  • March appointment - this appointment actually fell during my last week on my last busy-season client.  This was the now-infamous visit where my doctor (in her best Italian mother style) told me I was "significantly worse than the last time [she] saw [me]".  Naturally, 60+ hour weeks had taken their toll... Felt confident that despite the set back, I was going to be able to use the upcoming slow period and extra vacation days to recoup without much fuss.  WRONG.
  • Time between March appointment and today's - Though my work schedule remained reasonable or even slow at times, I didn't seem to be improving.  In fact, I felt steadily worse (more stiff, more achy, more 'tender points', more exhausted, blah blah blah).  I spent last week in Florida for training (and no, it wasn't a pleasure trip because you spend the whole day in windowless meeting rooms staring at a computer, and flying isn't the best thing for my joints either).  I've been booked up pretty much every weekend.  Did get a clean bill of ocular health from the opthamologist, but had to start a nasal spray for allergies (on top of oral antihistamine - it's wonder I have any fluids left at all).  And, this weekend the shot in my shoulder wore off (ouch).
I tried to prepare for today's appointment with a list of my most persistent and/or troublesome symptoms and my husband to play back up when my memory failed (I don't know about you, but no matter how I try to prepare the doctor asks me questions I can't remember the answer to and it's very helpful to have the person who has to listen to the whining with me).  After discussing my list and concerns, she performed her physical evaluation.  Which warrants another tangent - I hate that after the exam all my tender points hurt because she had to push on them.  I'm glad she's thorough but it's a lose-lose no matter how you slice it.  But I digress. 

At the end of her evaluation, she told me she's not going to give me another shot in my shoulder, at least not now.  She feels that I'm actually having an overall full-blown flare, and therefore she'd rather have me try the 6 day prednisone pack treatment for more widespread relief.  Her hope is that it will be enough to help me get over this hump I haven't been able to get past on my own, and onto real recovery (then, if everything else improves and my shoulder's still bad she'll give me a shot at that time).

So the question naturally arises, why didn't I know I was flaring?  I have two answers.  First, this would be the only flare that I remember where I was still functioning.  I was getting up and going to work, I was on time for training each day last week, I'm sleeping a lot on my days off but I also haven't taken my Provigil those days.  In the past, a flare meant I was out of (well, school at the time), didn't get my own food, never got out of my pjs.  So, arguably, a 'functioning flare' could be better than worse - except that since I was functioning I wasn't truly resting enough to try and recover.  My second thought on the matter is a tiny bit of denial.  While it's true I probably wouldn't ultimately have called it a flare on my own because of my functionality, I also didn't WANT to call it a flare.  The word crossed my mind often enough (usually as "gee I hope I can turn this around before it becomes a flare"), but I was always pretty quick to be sure I relegated it to a future threat, not an imminent reality.  I haven't had a flare in years (at least not what I've considered to be one) and I'm not too keen to accept having one now.  And that, in turn, is fueled by the disconcerting knowledge that one flare can potentially weaken you and set you up for another.  Greaaaat.  Since I'll be starting the treatment tomorrow (I don't know if I'll have side effects and I'd like to at least start my recovery calmly), I officially took my first real sick day.  Fabulous.

I've never tried this prednisone treatment before, but I've heard it discussed quite often by my contemporaries online (along with longer steroid therapies, glad to avoid that).  For those who may be wondering, it's a taper treatment, where you take 6 pills the first day, 5 the second, 4 the third, and so on for 6 days.  It's supposed to be a moderate 'jolt' for your inflamed joints and systems.  Anyway, with this turn of events still processing this morning, I forgot to ask the usual questions "how long should I expect to wait to feel the effects" and "what side effects should I anticipate", so I tried to look some info up online this evening (after a few naps, of course).  I gave that up pretty quickly though, because I kept finding discussion boards where many people said the following:
  • It caused so many side effects they gave up after only a few days (I'm not too worried by that because I know enough about steroids to understand you don't just stop the treatment like that, but I am concerned what side effects I might be battling as I try to get back to work)
  • It caused severe cramps
  • (From those who finished the whole course of treatment) it provided moderate to full relief during treatment but wore off quickly and completely (many of these people had actually taken 3 or 4 rounds within a few months - I at least know my doctor would never have me do that)
And no one really had anything good to say.  Double greaaaaat.

So, if you have some positive (or at least practical) information about using this 6 day treatment, please share!  In the meantime, I feel a nap coming on...


  1. Sorry Jenny, I don't have any information on this remedy. I would be worried for myself as I have all kinds of reactions to meds, and from what I've heard about prednisone, I can't imagine having to take 6 of theses pills in one day. Hopefully this treatment will work for you and put you back on track to better health. Good luck.

  2. I hope you will feel better soon. I never try this treatment, the "worse" I had was cortizone, it was really great for joint pain, but has too much side effect to do it on a long term.

  3. Hey sweetie, I wish I had anything helpful to say about your treatments but unfortunately I've got nothing. I do know however, that you are amazingly strong and if anyone can kick this flare's butt... it's you! I'm thinking about you my dear.

  4. Hi Jenny. I've used a 5-day pack of Medrol (which is some kind of prednisone, similar dose), a couple times for all over joint pain, and I LOVED it! It made me feel great. I had no side effects. The feel good factor lasted for about 4 or 5 weeks after the pills ran out. I call them my Magic Pills. Good luck with your decision. Stephanie

  5. Stephanie! Yay! I have so many questions - I'm having a problem that between doses, one the previous one starts to wear off, I'm in SO much pain, more than I was in the beginning. I'm scared that as the doses taper that pain will be around longer (it does go away with the next dose). Did this happen to you? Did you find that by the end of the pack the bad pain was gone? I was up overnight last night with all kinds of horrible pains. Also, it is apparently contra-indicated with ibuprofen, did you use acetaminophen with it (or did not you not need anything)? I never really had success with acetaminophen because it's not an anti-inflamatory but don't want to risk the GI problems. At what point during the pack did you feel like you could definitively see improvement?

  6. The first time I took the 5-pk (3 months ago), I could feel immediate relief w/in 24 hrs. My pain did not get worse between doses, but at the end of the 5 days there was still some pain, so my doc gave me another 5-pk. All pain was gone w/in 24 hours and it stayed gone for 4 or 5 wks. I was just on vacation (the first 2 weeks in June) & my doc gave me 2 more 5-pks. I took the first 5-pack and then just kept taking 1 pill a day thruout my 2 weeks of vacation and was pain free that entire time. It sounds like you have much more pain that I did. I'm sorry for that. But I did not need any other pain reliever while on Medrol. I hope I answered all your questions.


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