Hi....I am not sure where/how I should be posting this question. I have already posted my history twice; do I need to find that thread before I ask a question? Question is....this 10 mg dose for a month now has stopped my nightsweats. I plan on doing a 1 mg reduction next week, but hate to "Rock the boat". The nightsweats are annoying, but not as annoying as the continuous fatigue....pain is under control. Thank you!
LO Kathy. you are in the right place to post.I am finding the fatigue and foggy brain most annoying.i am going down from 15mg to now on 9mg to 8 mg very slowly I am pretty sure one of the more nkowable girls will be along wiith better info, on how to cope with reducing pred ect.take care Dave.
Hi Kathy - no, if you want ask a question then this was the right way to go about it! The history bit is to help those of us who reply to know a bit more about you. I've strted replying now so will have to manage without that knowledge - but heyho!
It sounds as if you started on 10mg - did that control the other symptoms besides the nightsweats? One group starts their patients at 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year! A reduction should really never be more than 10% of the current dose, some people don't manage even 1mg overnight and take a few weeks to get from every day old dose to every day new dose. The pred hasn't done anything with the underlying autoimmune disorder that leads to the symptoms - it is managing said symptoms and the reduction process is to find the lowest dose that controls them. Many doctors like to keep their patients at the starting dose until the inflammation is dealt with and all their symptoms are well improved and steady so I'd feel that maybe starting to reduce after only a month at 10mg is perhaps a bit hasty. On the other hand - you could try reducing 1mg every third or fourth day and see how you tolerate that. If you are too uncomfortable you can then stick at 10mg for a bit longer before trying again.
Elsewhere on this forum is my "dead slow and nearly stop" reduction plan which has worked very well for a lot of people. I'll repeat it again to save you looking:
A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. 1mg at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.
All I can say is - try it!
Thank you so much for the detailed response! I have bucked the system twice by reducing too quickly...ended up back at 10 mg daily. Do not want to do that again....cost me a week of misery! Have printed your regimen out and will take it with me to the rheumatologist next week. Any info about Vitamin B 12 for the fatigue? Thanks!