So, I mentioned earlier that I hade overdoen tthe exercis eabout 4 weeks ago and then also contracted some virus - was man down for a few days and afetr that felt really low - reminded me of having glandular fever - so maybe EBV reactivted. I played around a bit withupping my Pred dose from 5.5mg to 7 fro a few days then down again and then up again - but never staying up for more tahn 3-4 days. Scared of getting stuck there :).
Anyway do not know if its related but my neck and upper arms have been a bit stiff and sore for a while now. My upper arms feel like the pain is in the bone though. I never really had upper arm involvement when I was first diagnosed.
I know now from expert advice on here - that I should have gone up to 10mg for a couple of weeks.
Can I still do that now and how quickly can I come down to 5.5mg again?
As usual - thanks so much.
Written by
Slosh
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I’m new to this PMR that I’ve been diagnosed with but isn’t the dosage of prednisone up to your rheumatologist (doctor)? I’m reading many people seem to be taking it upon themselves to decide how much and when to adjust but thought it was their responsibility to care for this. I really dislike my rheumatologist and will be changing but I still believe and I pay them to make these decisions. Help me understand what you all are doing on your own making these changes?
After 5 years of PMR and 2 years of GCA-LVV with flares of each, over time I have had advice from my Rheumatologist about dose increases and decreases. However, we know our bodies so much better than our doctors do and sometimes it's hard to get in touch with them, so we feel able to make decisions on a day-to-day basis. We become "expert patients"!
In the early days it is better to stick with what we are told to do, but enter into a dialogue with our doctors when and if we feel the need. That way, I have developed confidence in managing these conditions. However, I am very fortunate to have a wonderful Rheumatologist who I can contact if I need to and would always inform her of any problems.
Many patients in the UK don't have a rheumatologist in the first place but there is also not the same access to advice from consultants as you may be used to in the USA nor is there the continuity aspect that being under the care of one doctor. Often we see a different member of a team each time we have an appointment but for the last 18 months many patients haven't had an appoinment with their rheumatologist. Most of us who make our own changes do so after coming to an agreement with our doctors as Rugger has explained. When you have been involved in the forum longer you will see that people aren't making such decision in a major sense but reacting to a tapering problem in that it is time to stop reducing and possibly going back to their previous dose. The only person who can know if a taper step is working or not is the patient - not the doctor. Forcing a reduction will just lead to problems with the inflammation increasing again and causing a flare - which is likely to be more difficult to get under control and ultimately result in needing more pred.
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