Back in November, when I was diagnosed with PMR/GCA, I was started on 60 mg of Prednisolone. Due to an aggressive (but unfortunately unsuccessful) taper down plan, that dosage had to be increased to 80 mg, just to get me back to square one!
Hovering at 80 mg for way too long, I began to feel like I was boarding with Lucy in the Sky; and although she was a generous and considerate host, I could not get out of there fast enough!
I have since managed (with many days of aches, pains and totally annoying steroid withdrawal symptoms) to reduce by 5 mg every 10 days!
And today, I am happy to announce, that I start a 10 day regime at 55 mg per day.
I am officially BELOW where I started, back in November!!!!!
Good luck! I can’t imagine how it feels taking such a high dose. Thankfully, and long may it continue, I have never had to go higher than 12. When I started with PMR the doctor wasn’t sure what it was, my inflammation levels were not high and after 6 months of my appearing on a regular basis in the surgery I think as a desperation measure he decided to put me on a dose of 10. After two days I could move my arms, even comb my hair, what luxury! Went up to 12 after a flare and since then been on 10. Beginning of the year I started on the slow reduction recommended and I’m down to 8, so far so good.
I was worried the fall I had last week would upset it all but so far so good. The only thing I have is a very colourful face and a intermittent headache. The headache the result of not being able to wear my glasses because of the bruising. My world is soft focus so presume it’s eyestrain.
Ohhhhh poor you!!!! That so sucks, that you fell. I hope you heal quickly and get those glasses back on! A soft focus is a pleasant change, but not if you're struggling to see! Be safe and stay warm!
Well done ! You certainly need patience with this condition and super sensitive intuition. “ How can I go forward when I don’t know which way I’m facing.”🎼
Keeping fingers crossed. Hopefully you are starting to know withdrawal vs inflammation for your body. It's easier for me on lower dose I think. If it starts to be full on grind then stop and rest at that level a wee while longer. 👏🌻
• in reply to
Yeah, well... actually I'm used to feeling like crap all the time now, so I don't question what's actually causing it! HA!
I definitely notice changes after each 5 mg reduction... the "crappyness" lasts for 5-6 days and then I start to feel better, but have been reducing at 10 day intervals, so I get only a few ok days.
When I get to 50, 45, 40 etc.. she has me hold steady at each for 30 days.
Slowly do's it. I started on 30mg in September going down to 15mg then 10mg in one month. I am now dropping by one mg per 4 to 6 weeks. I am now down to 6mg. I hope to go down to 5mg at the end of this week or the next.
Happy for you Melissa- as you are no doubt feeling relieved - although (also sorry to cast a shadow) the main thing as DL also implies -is not too get too focused on tapering - as the 'speed' we decide to do that at doesn't necessarily coincide (in my experience) with the 'progress' of the disease . But look whose talking (: - I also need to constantly remind myself that I MUST take what my body says I need to control the inflammation - or it will just be backwards or rather round and round. At 55mg it is of course unlikely to be the issue that most of those of us with GCA will have to confront until further down the track at those much lower 'PMR' type/level doses.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What happens when trying is not good enough?
Reducing pred dosis on same day as flu shot a good idea?
Now I understand what a Flare is...! The Dragon is Back!
what is normal when tapering?
Flare - how much to increase by and for how long?
