Safe dose of pred.

[Jeanjean16]

I have had quite an interesting year with PMR and a total hip replacement. I have reduced to 11 mgs but each time I try to go lower all the aches and pains return and I have to take painkillers..Rhemy and G.P say keep reducing by 1mg each month, but I am not happy with that. It is safe to stay on 11mgs for a few months?

[HeronNS]

I'm not one of the experts, but seeing what others have posted over the year or so I've followed this forum I'd say it's safer to keep your inflammation under control than it is to allow it to build up. However, have you tried using the dead slow nearly stop method to reduce? That helps to avoid the steroid withdrawal pain which is so much like PMR itself it is nearly impossible to tell the difference. It's helped a lot of us to get our dose down lower.

healthunlocked.com/pmrgcauk...

[nancyannehanson in reply to HeronNS]

What does occur during steroid withdrawel? Can I just drop by 5mg per day I have been on 30mg daily over a month, what's the worst case scenario??

[PMRpro Ambassador in reply to nancyannehanson]

You develop symptoms that are often called "steroid withdrawal rheumatism" and are the sign your body is objecting to the change in the situation, missing its "fix" of medication. You aren't addicted but your body wants the same a usual.

There is no "worst case scenario" - other than if you drop by too much at a time you run the risk of one of 2 things happening: you will feel rubbish because of this withdrawal effect or you may overshoot the dose you need and have a return of symptoms that are a relapse. The pred hasn't cured anything, it is merely managing the symptoms and if there isn't enough - the symptoms will win out. At 30mg that shouldn't be a problem, it is a fairly high starting dose for PMR. But you never know.

Top experts have said for years that a reduction shouldn't be more than 10% of the current dose to minimise the problem - so at 30mg, 2.5mg at a time makes more sense. You can drop by 5mg, some people do fine but others struggle. You can't tell if it is PMR symptoms returning or the inflammation is still there - so the usual knee jerk response would be to go back up the dose. If you reduce the likelihood of it happening by using smaller steps you will feel better AND be better able to tell which is which.

[DorsetLady PMRGCAuk volunteer]

Hi,

Yes it's safe, in fact some doctors say you should stay at 10mg for a long period to help your adrenal glands. Others recommend not reducing during the winter months.

When you do start reducing again, try either 0.5mg per month if you are having trouble with 1mg or try a slower reduction plan, if you aren't already.

You are obviously not ready to reduce at the moment despite what your doctors may think or want! You need to listen to your body. You will be able to reduce when it's ready, so don't rush it and make yourself worse.

[nancyannehanson in reply to DorsetLady]

I tried reducing by 5mg as I have been on 30mg for a month. Ended in the cath lab.However ready to attempt titration again, please give me all your thoughts, so I can do this right.

[DorsetLady PMRGCAuk volunteer in reply to nancyannehanson]

Many can do that reduction okay, but obviously from your previous reaction - you aren't one of them.

Maybe you could try 2.5mg, that might work. Couple of points though - do you feel relatively symptom free on 30mg - not everybody gets 100% relief, but about 70%-80% is good. If not, then don't consider reducing.

Secondly, some people find reducing in winter months is more difficult, and Christmas time is always more stressful, so maybe not a time to think about tapering. Why not give it another month before you try? It's not a race, it's keeping the inflammation under control, whilst trying to find the lowest dose of Pred that will do that.

I know we always say it, but it's true - we are all different, some people find it easier than others, but it's not your fault if you find it difficult. Your body and how it reacts and your situation is not the same as mine, so what's good for you, is not necessarily good for me. You have, and will as you get more experienced, learn to listen to your body.

Never mind what the paperwork says - it cannot take into account your circumstances - it's only a guide.

[Patricia157]

I wholeheartedly agree with HeronNS And Dorset lady. I found it very difficult around the 11-10 mg with pain in my hips and back. I stayed on 11 for a few months and then dropped by half a mg each time using the dead slow method. This has worked for me although it was frustrating at the time. I have just had a new hip last month and was able to remain at seven mg without any problems.

The interesting thing since my operation is that touch wood I have no pain at all and the sweating etc. around my head which I had before the operation has completely gone. I am now walking unaided which is wonderful and slowly catching up on all those jobs I didn't get done beforehand.

It would appear that your body needs more time at the level you are currently on to keep the inflammation controlled as mine did this last summer.

Best wishes

[Rose54]

Hi

I was diagnosed in Sept 15 started on 15 preds and have struggled doing what GP wants me to .So having got down to 10 then going back to 12 I only do deal Slow and reduce .5 at a time .

I have got back down to 10 now and today am trying to go to 9.5

Lots post that they have manage to reduce quicker and sometimes it makes me feel I should be doing better but we are all different .

Just wanted to say your not alone

Rose

[Jillbowles]

I too have PMR and had a hip replacement in October. I left trying to reduce until 2 weeks ago. Reduced from 15 to 14. First 5 days pain and stiffness came back but I think it must have been steroid withdrawal pain as I am now ok.How long have you been on your dose? I plan to reduce by 1 mg till 10 but then much slower after that as advised on this forum. My rheumatologist wanted me to drop by 2.5 until I got till 10 but it was impossible for me.

[Jeanjean16 in reply to Jillbowles]

Before I had surgery in August I had dropped to 7 but this was with considerable pain. Within a few weeks of surgery I had a flare up and was back up to 15. Like you my rheumy said reduce by 2.5 then 1 per mo th once I had reached 10.

I found this impossible, 11 is ok, but even reducing by 0.5 is causing problems. I think I will stick on 11 until after Christmas.

On a positive note, my hip surgery went well I have full mobility now and go out for walks almost every day.

[Jillbowles in reply to Jeanjean16]

Good to hear your hip op went well. Mine too, I am walking twice a day for 25 minutes. Long time since I have done that.

[Jeanjean16 in reply to Jillbowles]

I had forgotten how a good a nice walk is.... Pleased to know your surgery was good.

[PMRpro Ambassador]

I was at above 10mg for the best part of 3 years at the start and this year after a flare for another 6 or 7 months! I haven't crumbled yet...

[Jeanjean16 in reply to PMRpro]

G.P and Rhuemy make you feel you are doing something wrong if you don't reduce as quickly as they want..

I will now stay at 11 until I feel ready..

[Mgt1234]

Unfortunately I haven't been able to get below 10mg for at least the last 8 years. I have tried the dead slow stop method several times but always end up triggering a flare, I have PMR and GCA. However, it doesn't stop me trying again, so I remain optimistic.

[PMRpro Ambassador in reply to Mgt1234]

I wonder if you are one of the people who only absorbs 50% of the pred? Which would mean that at 8mg you are effectively on the same dose as someone who take 5mg but absorbs 90% of the dose. No-one would turn a hair at you being on 5mg would they?

But a lot of doctors apparently don't know about the bioavailability factor with pred.

[Jeanjean16 in reply to PMRpro]

I don't know anything about it either....time for some research...

[nuigini in reply to PMRpro]

I decided to Google the 'bioavailability factor of prednisone' and didn't find much in the way relevant current research. Guess that why it's not on the radar screen for doctors.

[PMRpro Ambassador in reply to nuigini]

Nothing to do with current research - it isn't something that needs researching any further once it has been measured and that is now usually done during the development of the drug. In the case of pred it is a basic piece of pharmacology which was established at least 30 or 40 years ago. And a basic tenet of medication dosing is the pharmacodynamics. Since that varies from person to person - the optimum dose is going to vary too.

[nuigini in reply to PMRpro]

Ahh! said the blind man who didn't see at all.

Thanks for the clarification PMRpro.

[Jeanjean16 in reply to PMRpro]

Thanks for the info...