Hi! I managed to get to 3mg prednisolone going down by 1mg each month but after a few days on 3mg I am experiencing severe fatigue again. This happened before too and I went back to 10 mg but I don't want do do this again as I was down so low! Any suggestions?
Many thanks.
If you were OK on 4mg go back to that asap and you probably won't need to go higher. At this level you need to go slower than 1mg per month, 1/2mg is better and waiting longer between drops will also help to encourage the adrenal gland function to catch up. You are at a low dose, much less than your body needs to function, and that is part of the cause of the fatigue.
But you are never reducing the dose relentlessly to zero. You are looking for the lowest dose that manages the symptoms of PMR as well as the starting dose did. That isn't the same thing at all. You may have reached it - usually when the same thing happens twice at the same dose when reducing that is the sign.
Remember the 10% guidelines! Even a drop of 0.5mg from 4 to 3 is greater than this especially if the reduced dose is taken every day. So the thing to do is follow PMRpro's schedule or Dorset Lady's DSNS regimen. Slow and steady at this stage.
I’m reducing around this level now. If I dropped by 1mg I’d be on my knees with fatigue and the shakes to name a few. I do 0.5mg over 6-8 weeks but still it’s a slog that I have to manage carefully to avoid adrenal crisis. It’s a very different ball game to reducing at higher levels in my personal experience.
Yes SnazzyD, I understand I was trying to come down too quickly so I will go back up to 5mg & reduce slower, but it's all sooo frustrating.😡😱
Many thanks for you advice. 👍
I reduce O.5mg a time. I have the enteric coated, have just gone from 4 to 3.5 mg, and even then I did it every other day for the first week. I have also got lower than this andhad a flare, back up to 5mg!
So it really is slowly, slowly andwait and see! Try not to get too down, you will get there eventually.
I writeto let you know how Pred reduction was for me. In November 2012 I had GCA and was started on 60mg of Pred. I reduced over two years to the levels advised and had just got down to 1mg when I had a relapse into double vision. So it was back up to 60mg.
I did a lot of research mainly on BMJ Best Practice papers and found that relapses were not uncommon especially when the drop was around 7mg. In brief working in close conjunction with my GP the strategy for my reducing below 7mg was for me to become aware of 'how I was' responding to thecurrent dose over a period of several weeks. When I felt happy about my stability I then reduced by 1mg.This has been the pattern repeated for further reductions. Throughout the reduction period I kept track of my ESR levels and found the graph plot was quite sawtooth, often with levels above 30 and sometimes in the upper 40's range. I also monitored myself at home for blood pressure, but also very, very importantly as to how I felt. I kept a chart (one year) and a diary so I would become aware of the subtle changes in how I was feeling and any symptoms. This lead me to a very slow Pred reduction depending on my observational results and discussions with my GP. I am now down to 2mg of Pred and I hope to drop to just 1mg soon. I am feeling a lot lot better with more energy. I am a lot more active and feel good in myself. The ESR still is sawtooth in patten but the pattern is a lot flatter but with a few results above 30.
I hope this narrative will help you in some way.
Richard P
After two and a half years of going up and down, I never went back to a high dose- just a slight increase until I felt comfortable, Then something seemed to happen and I reduced from 2 gradually till bibgo I was off it. Good luck
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