Oh Prednisone…you save my life and give me back my breath and free me from debilitating pain and then bizarrely mess with my body and threaten me in all sorts of new ways.  Let’s discuss the history of our relationship together.

Pre-diagnosis I was put on prednisone twice.  Once for pain and the other for breathing.  Both times I was prescribed a short-term tapered dosage starting at 60mgs.  The first time was a 7 day course, the 2nd time was a 10-day course, which turned into post-diagnosis and continues on to this day.  Both times at 60 mgs, I felt amazing.  I could breath easier than I had in weeks and my joint pain had miraculously disappeared.  Both times that miracle ended as soon as my dosage dropped down to 40 mgs and my intense pain and severe breathlessness would return.

That second dosage I only had to put up with 40 mgs for a couple of days before that fateful ER visit that shone a light onto the severity of my situation and my doctor determined I needed to go back up to 60 mgs until further notice.  This is exactly where I stayed until mid-January.

At first, I only heard people talk about the side effects of prednisone, I didn’t seem to be experiencing any.  I didn’t notice any weight gain or increased interest in food or shaking or craziness that others seem to assume all came with the package.  I just enjoyed being able to breath well enough to not feel like I needed to head straight to the ER.  Until all that changed and I acquired the long list of side effects at the end of this post.

One day I was feeling really bad and particularly out of breath.  By the end of the day, everything my kids had to say was like nails on a chalkboard.  I felt like I was going absolutely crazy.  All of a sudden I realized I’d forgotten to take my prednisone (and all other pills I take at the same time).  I usually take them around 8am and this was 8pm.  I immediately took the pills.  My kids and I usually play board games before bed each night.  This night I asked them to bring the game into my bed so that I could be a bit more comfortable.  I also made myself a fresh cup of hot tea, which I drink throughout the day to help with my chest discomfort.

While sitting on the bed with my kids it was as if someone came up to me and threw hot tea all over me.  However, when I looked up the only one with a tea cup was me.  I still don’t remember what happened exactly.  It was as if my hand belonged to someone else and I don’t even remember it moving in a way that would have resulted in this incident.  What really scared me is that my kids were all sitting right there and thankfully the direction the tea was thrown from my hand was towards me and not my kids.  My mind and body were so out of control with one missed dosed it was amazing and very very scary.

My husband then graciously put all 3 of the kids to bed (we usually divide and conquer).  When he came down I requested he make me another cup of tea and while he was doing that I started itching.  The itching got worse and worse and when he checked it out he confirmed I had hives all over my back.  It started spreading fast and I began having trouble swallowing so off to the ER we went.  The only theory that came up as to why I got hives was that one of the pills in the mix that I’d missed was Bactrim.  I take this antibiotic 3 times a week to help prevent pneumonia while on prednisone.  The doc thinks it is actually possible that I’m allergic to Bactrim, but the prednisone has been suppressing any allergic reaction.  I suppose we could find out later as I decrease my prednisone dosage, but maybe even a little bit of prednisone would protect against a reaction…I’m not sure.  All I know is that I NEVER want to miss my dose again, so I put in another phone alarm to tell me to take those meds so I never have to experience this again.

I was set to start getting off of prednisone this January.  My Rheumy wanted me to decrease by 10 mgs per month.  He told me to go from 60-50 mgs.  The day I did this was a complete disaster.  By 3pm I was severely short of breath, hands shaking, mind going crazy.  I called his office and told him that it was too much, too fast.  I consulted with my ASS board and many recommended decreasing by 2.5mgs per week.  My Rheumy still tried to tell me to go down by 5mgs per week.  The following day, I retook 60 mgs, and the next I ignored my doc and decreased by 2.5 mgs.  Things went well for awhile.  However, at 47.5 mgs I got my first sight of a symptom I hadn’t seen since Mayo…mechanics hands.  This is the strange symptom of my disease that causes my fingertips to crack open.  Only one did this time, but to me it was a reminder that the drugs I take really do keep things at bay and although a crack in my finger is not life-threatening, it is a still a sign of how fast things can come back.

The following week I went down to 45 mgs and I could not breathe.  My chest was so tight and in pain.  I gave myself some excuses hoping it was pass…it was the day after V-Day and we’d gone out the night before.  Maybe my body needed a day or so to get used to the drop.  However, by Tuesday (3 days in) I was getting scared.  My breathing was so labored I was hardly able to do anything and I became extremely fatigued.  I felt very much like the days before I was being treated and I’d go into urgent care hoping for help.  I went to my chiro twice that day to see if he could help loosen up my chest (yes, my chiro does help my lungs!).  It was a quarter after 4pm and I decided to just walk into my Pulmonologists office to see if he could help (my internist was off that day and I was still awaiting a call back from my Rheumatologist).  I went sobbing to his front desk in desperation and he immediately saw me.  We opted for a chest xray to rule out progression and infection and I have standing lab orders so I had them draw those up too.  Thankfully all labs and xray checked out.  Which meant the only possible cause was the decrease in the prednisone.  I went back up to 47.5 mgs and was able to take a walk that night – by the second dose the next day, all went back to “normal”.

This is a high dose to get stuck on and I needed another plan.  I discussed various things with my cousin, who is an excellent pharmacist and a great source of information and he’s always willing to do extra research specific to me and help sort through it all with me.  With him, I’ve decided that instead of every week going down, I will try every 2 weeks to give my body even more time to get used to each new dose, especially now that we are at levels that even early on, I wasn’t able to breathe well on.  I always immediately noticed that at 60 mgs I could breathe and at 40 mgs I could not.  So I need to tread carefully here.  Yes, most people seem to be able to decrease faster than this, but as my pulmonologist says, it looks like my body just really likes prednisone.  Ugh!

Today is the day that I’m trying again.  I’ve taken my 45 mgs this morning.  I’ve been at 47.5 for a couple weeks.  I plan to be proactive with my exercise today in hopes of keeping my lungs working properly and being successful at lowering my dosage.

I’m not sure when I noticed or how it came about – but the side effects started coming and they came fast and furious.  Here is what I have experienced beyond staying out of the ER (for the most part) while being on prednisone.

  • Swelling, Bloating and Rapid Weight Gain, which has included.
    • a pregnant looking belly for which I am often asked, “When are you due?”
    • a hump in the back of my neck – thankfully I have long hair, although I often show it off as proof that I really didn’t cause that pregnant looking belly as I have a similar one on the back of my neck
    • moon face, double chin, and neck fat
    • bigger boobs…the only positive on the list and I’m grateful that men have a one track mind and therefore my husband can focus on this one area and seems totally oblivious to any of the other aforementioned swellings.
  • Blurred Vision:
    • I noticed it getting worse so I went in to get a complete eye check.  I needed one anyway since I’m now at a high risk for cataracts and glaucoma.  My script had changed significantly and even worse I just got my new ones in December and I’m already noticing that things are blurry…while wearing my glasses!
  • Low Potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling)
    • Luckily, this one was easily combatted with a prescription strength potassium supplement.
  • Chest pain, Shortness of Breath
    • So my disease(s) will give me chest pain and shortness of breath AND the medications I take for them will ALSO give those things to me….and how is it again I’m suppose to tell that things are working???
  • Sleep Problems (Insomnia)
    • This has been a major issue that I periodically succeed and fail at combating.  Not only has it proved hard to fall asleep, the other issue is if anything wakes me up, it was impossible for me to go back to sleep.  Here’s all the things that I’ve tried with varying success.  Currently, the increased exercise seems to be solving this issue for the time being.
      • A variety of drugs for pain, anit-anxiety and sleep have all been tried and are generally my least favorite solution.
      • Binaural, brain-wave, meditation recordings…most just pulled up on youtube
      • Hot showers, hot tea, full belly and other “normal” type activities
      • Increased exercise…lately I’m just so worn out that I actually can just pass out – which is a beautiful thing (except for when it happens so fast that I end up sleeping all night with a bra on!)
  • Increased Appetite
    • And I wouldn’t really even call it appetite, more like increase compulsion to stuff my face with food despite the fact that I’m not at all hungry.  Exercise has helped a lot with this, along with tracking my food, mindful eating practices, and stuffing my face with either completely plain tasteless popcorn or pouring myself a bowl of frozen fruit, which is sweet and tastes great, but also takes a long time to eat because it is frozen…so it satisfies the need to put hand to mouth, without too many calories.
  • Acne
    • Yeah, this sucks…found in places I’ve never had it before.
  • Dry Skin
  • Slow Wound Healing
    • This is the worse for muscle, tendon issues that make it difficult for me to get exercise.
  • Mood changes; Aggression; Agitation; Irritability
    • AKA: Roid Rage
    • Yes, this is real
    • Yes, this really, really sucks
    • I can go from zero to boiling over in a second
    • I do what I can to walk away, incorporate my meditation, stress reduction practices, exercise I’m sure also helps, eating well, getting enough sleep, etc.  I’m not perfect.  I have to apologize a lot.  Thankfully, my husband knows how to turn my moods around and rarely feeds into them.
    • Honestly, it isn’t like I’m a naturally even-keeled individual…my mood swings are well known, but now they are just amplified and usually totally overboard reactions to things.
  • Trouble Thinking, Speaking
    • Not sure how much this can be due to these meds or having experienced hypoxia too long
  • Facial Hair Growth in Females
    • So one day I was looking in the mirror in my car and realized I could probably braid my mustache…ugh…off to the waxer I went!  Hopefully I can get off this drug before I have to join the circus as the bearded lady.

So, as you can see prednisone provides me with lots of interesting times in life.  Never a dull moment!  Hey…it could be worse…at least I can BREATHE!


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