Following my PMR diagnosis I’ve been on 15mg Pred for 5 weeks. My mobility is good and I’m pain free. The downside is the other symptoms e.g. nausea, tiredness, dizziness.
I’m seeing the doctor tomorrow and I’m going to ask try an agree a tapering plan.
What advice would you give me and are there any questions I should ask the doc?
You have a copy of my tapering plans - should you need them.
But I’d be suggesting 1mg a time per month, although I suspect GP may want to try 2.5mg to 12.5mg then same again to 10mg as per most of the guidelines - which do work for some but not all.
Hold out for SLOW!!!! 1mg per month that works is far preferable to 2,5 that doesn't and leads to a flare!
The other symptoms are probably the autoimmune process itself, common in autoimmune disorders and sometimes worse than the PMR pain due to inflammation.
thank you & fingers crossed the Doc agrees to a reduction
Are you taking Pred with food or something like Omeprazole? I learned the hard way how harsh it could be. It’s just the nausea I am addressing. The rest I experienced with the AI disease. Great to be pain free though. Good luck with your taper.
Hi,
I’m taking inhibitors first thing, then Pred after breakfast. I might try doing it a different way round, but TBH I don’t expect any difference
I’m a bit behind you in the journey. Am on my fourth day of Pred. for a four week period. Saw rheumatologist on Thursday and am waiting to speak to GP about his report. Tapering is going to be on my list of things to discuss. I too am getting nausea and a bit of wooziness and fatigue. Had a spell of being wakeful last night too. I have just ordered Kate Gilbert’s book 2nd edition. Good luck.
Thanks Indigo2417.
I’ve also got Kate book and about a 3rd of the way through.
Although my doc was indicating a >10% drop, she was using the NHS plan. What was reassuring is the acknowledgment that the she and the practice do have experience in this area and are very much focused on what the patient is telling them ie if we see a flare then they won’t hesitate to increase the dosage or refer me to Rheumatologist
Been to the doctors today and I took all my questions. Credit where it’s due, the GP was calm, understanding & reassuring. All questions were answered.
With my makers under control, we’ve agreed to go from 15 > 12.5 for 3 weeks and see how that goes.
She did ask if I’ve joined any help groups & I mentioned this forum being really helpful.
The next phase of the journey begins!
Fingers crossed all goes well…
I’ve used as version of your tapering plan to keep a journal.
Thank you
Best of luck.
How did it go?
Hi krillemy ,
Once I get cured of PMR and off Pred I’m never going on a rollercoaster again! This one is enough for me.
I’m now down to 7mg. Can’t say it’s been straightforward and each drop has had its moments. I’ve found keeping a diary, asking questions, reading the forum posts and listening to your body has helped me.
I am 5 years in..... I am glad that you are doing well, and have no flairs 
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