Hi I'm due to reduce my pred from 20mg to 15mg tomorrow ( been on pred 20 for 2 weeks) yet not due to see rheumatologist for another 2 weeks.
Hopefully all will be ok but what if those unbearable pains come back? Can I self medicate back to 20mg?? Sorry but o am very new to all of this
Before you do anything, have a look at this paper:
rcpe.ac.uk/sites/default/fi...
Hopefully the pain will not come back. Usually if pain returns right away it's steroid withdrawal but I don't think you've been on pred long enough to experience that. Dropping by 5 mg is quite big. Would you consider dropping by 2.5 mg for a few days and then another 2.5? It will come to the same thing but be easier on the body. Once you are at 15 please don't let the doctors make you drop another 5 mg in one step to 10. Should not reduce by more than 10% at a time! The secret is to keep the inflammation under control while reducing pred dose to the lowest possible level without letting pain return. That is a very slow process unfortunately, slower than you may be expecting. It's good that the pred is working for you, but the inflammatory disease is still there. Pred doesn't cure it.
You will get some expert advice when Europe wakes up, if not before.
Thank you for this. I will read this with interest and think carefully about a 5 mg reduction .
Hi I am in same position as I was on 60 pred and dropped down by the 5 then another 5 but wow the pain all left side came back x I rang hospital and they said to go back up x but it's time to come back down but I see you think by 2.5 should. R enough and not 5 so I really need to know the protocol of what to do x I am not back to Feb and don't want my headaches or my eyes bad again like they were x as since I dropped my eyes are still not the best x I will read that paper that you have put on here with interest x thank you x
Hi Woodiesmum. I can't give advice regarding GCA, and really only speak from my own experience re PMR, not from any medical training. However I think if you were to post your question in a new thread, indicating you have GCA, you would get some great answers from people who know.
As HeronNS says that is quite a big drop. You could try and split it as suggested or alternate between the 20mg and the new dose, day by day. That should reduce the shock of reduction a bit. Don't reduce if you do not feel the pain is under control. Normally ESR and CRP are checked first to confirm this.
Are you taking vit D and calcium supplements? These should be prescribed as pred can affect your bone density. You should also have a Dexascan to check your bone debsity. A blood test for vit D may also be a good idea if you have not had one already.
I am Vit D deficient and have been for years so I take my own supplements x , I had two injections of 300 hundred thousand units in two weeks but by the end of month it had dropped back down to 17 x so I went over 10 thousand units a day then once it was stable reduced slightly x so I have got great maintaince for them x I went through the change naturally at 32 so have been very careful with calcium too x
Hi There. Reducing by 5mg at a time seems a lot in comparison to how very slowly my own doctors have reduced mine. No more than 2 mg at a time. However you shouldn't self medicate until a blood test reveals that the esr and crp are raised. Only then is it certain that inflammation has returned. I really sympathise. I have had pmr since 2015 so have got to know the ropes. You could ask to reduce the pred more slowly. I have never been asked to reduce it by any more than 2.5mg. Let me know what you do.
Hi Jude. I was on 20mg for just over a week before the rheumatologist reduced the dose to 15mg and I was fine. But like the others say, try to get your vitamin D checked and get a Dexascan done too.
20 to 15 after a week is a normal sort of reduction with pred - I had 2 weeks of 15mg and dropped to 10 - no problems at all. After the flare that happened as soon as I was stopped altogether after 6 weeks I never managed to drop 5mg at a time again! I struggle now to drop 1mg. I think the longer you are on pred, whatever the dose, the harder the change becomes.
Hi Jude,
Some can manage that drop (as Therealsue states) but for most it's too big a step. 2.5mg is more normal.
Yes you can self medicate, but it's not really wise to, especially at the beginning before you're accustomed to the medication and the illness. The idea is to reduce slowly to get to the correct dose to control the problem. If you keep yo-yoing up and down you will make that process more difficult.
Can't really add much more than HeronNS.
Hello Jude, I'm with most of the other replies in thinking 5mg is a big drop. As I've come to realise, we're all very individual in how we respond to the illness and the treatment, but the common theme I've found in the months I've been reading posts is slow...slow...slow when reducing at the various stages.
I started on 15mg, and in line with GP advice reduced to 12.5mg after a fortnight - which was fine - then 10mg after another fortnight - which definitely wasn't! I had been a bit sceptical about that plan, after seeing the advice on this forum, but thought I'd go with the medics to test it out. Having tried it the GP way, I feel more confident about insisting that I go by my symptoms and what my body is telling me. In the end, I had to go back up to my starting dose of 15mg to get comparable relief, and am now just starting on the dead slow approach.
There's such a learning curve in the early days, and it can be difficult to insist that you know best! Hope you have the benefit of helpful and receptive medics.
The more I read others' experience on these forums the luckier I feel about the advice I got from my GP. Although it seems to be accepted protocol for the first reduction to be 5 mg, whether from 20 or 15, I was never advised to take anything like that big a step down. First of all I was on 15 for five weeks (the one week trial, no reduction from that, followed by four more weeks. From then on I reduced by 1 mg per week until sticking point at 9. After returning to 10 I began the dead slow reduction which I've followed since then. I started pred June 2015, now reducing to 2. I feel pretty happy with that progress, slow though it's been, and once I got to 4, a little less than a year after starting, my doctor was also happy and would have been okay with my staying there had I felt I needed to. Although one can't know for sure I am willing to bet that given my experience trying to drop from 10 to 9 I would not have fared well with larger steps prior to that. And really, look at what it amounted to: a successful drop of 5 mg in five weeks. I did have to go back to 10 because of an incipient flare, but only for about three weeks, and DSNS has kept me on track ever since. 
Of course, one has to do more than take pred, and stress avoidance is a big part of successful symptom control.
I can identify with the fear of pain coming back. In torture the anticipation of the pain is part of it. I also think the inflammation and the Prednisilone can add to making you feel very vulnerable . If the pain comes back it can be got under control again, Prednisilone has worked before so it will work again. When you do go down try and note what you are having problems with, e.g. doing up your bra, turning over in bed, walking any distance uphill, in my experience this seems to register with Doctors more than saying you are in pain.
Good luck with your reduction.
"If the pain comes back it can be got under control again, Prednisilone has worked before so it will work again"
Yes, to a point - but sometimes once you allow a flare in by reducing too precipitately it can be very difficult to get under control again. Experienced doctors sometimes recognise that and also encourage the slow slow approach to reduction. And it is why we tend to say on the forum not to allow a flare to get a real hold - if you have returning pain, don't try to tough it out. Go back to the dose you just left, wait a week or two and try again, preferably with a smaller step.
Be aware that the 20mg dose you started on was to get the inflammation under control. After that, doctors will want to get you down to a dose that keeps you relatively stable as quickly as possible. So to ask you to go down to 15mg is quite normal and not expecting too much. A starting dose of 15mg is now regarded as preferable in any case - as you will have read in the Kirwan article. It is at about 12 to 10mg and below that the 'rule' about not dropping more than 10% kicks in. It's not ok to self medicate without consulting either the doctors or the medical guidelines. Steroids are nasty drugs and it's the cumulative dose we take over time that does the damage. At least give your doctors a chance and follow their advice for the first few weeks - but monitor yourself and keep a record of your symptoms. Don't be panicked into upping your dose without talking with the doctor first.
It's also worth bearing in mind that the treatment regime advocated by Prof Kirwan has never been compared in a controlled study with the slow taper regime described in the BSR guidelines, so there is no definitive research evidence to say that one way is better than another. It could be in any case that it's an individual process.
"A starting dose of 15mg is now regarded as preferable in any case - as you will have read in the Kirwan article"
The 2015 EULAR/ACR Recommendations for the management of PMR says:
"The panel conditionally
recommends using the minimum effective GC dose within a range of 12.5–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in patients with a high risk of relapse and low risk of adverse events, whereas in patients with relevant comorbidities (eg, diabetes, osteoporosis, glaucoma, etc.) and other risk factors for GC-related side effects, a lower dose may be preferred. The panel discourages conditionally the use of initial doses less than 7.5 mg/day and strongly recommends against the use of initial doses >30 mg/day."
Hello - I'm new to all this.
Red cheeks?
GREAT start to the New Year.....
New to PMR
Struggling to reduce Pred from initial dose of 20mg
