Should I increase pred: Hi all. Hope everyone is... - PMRGCAuk

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Should I increase pred

Doodles2013 profile image
8 Replies

Hi all. Hope everyone is well today. I have managed to get down to 1mg pred buy while I was on 2mg pain came back. It is worse now I have gone down to 1mg. Can I go to say 5mg for a couple of days and see if the pain goes away then drop back to 1mg. I want to get off them ASAP.. TIA

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Doodles2013 profile image
Doodles2013
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8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You might want to get off them asap… but it not as easy as that, and to be honest, if you had pain at 2mg.. then it was not very wise to reduce…

This link contains info for a flare - and I would suggest you return to 3mg rather than 2mg once you’ve got things under control-

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

You may want to get off pred asap - but if you try to go to too low a dose while the PMR is still active the symptoms will simply come back. You aren't reducing relentlessly to zero - you are tapering or titrating the dose to find the lowest effective dose which is a rather different thing. That is the lowest dose that gives the same level of symptom relief as the starting dose did - you start at a dose that is more than you are expected to need and then slowly go down to a lower dose. Go too far and the inflammation will build up again and you will be back where you started.

The pred does nothing to cure the illness, there is no cure and all that can be done is manage the symptoms until the underlying autoimmune disorder burns out and goes into remission. That can take anything from as little as a year to several years. Half of patients need more than 6 years although most of them get to low doses, under 5mg for example.

It doesn't mean you won't get lower - just not yet. If you are down to 3mg before the symptoms came back that is a really low dose and you will probably get lower later. But you should have stopped at 2mg when the pain returned - and better is to go to 2.5mg or 3mg for a while before trying 1/2mg. If you don't all that will happen is that the inflammation will build up and you will be back where you started when you went to the doctor and got pred. Try to force it and you may end up needing more pred next time to manage the symptoms.

Polygolfer profile image
Polygolfer

I’d say speak to your GP or Rheumatologist before you decide to increase steroid intake. If you live in an area where there is a waiting time then try over the counter painkillers. They are mostly ineffective against PMR but will give you relief if it’s not PMR - at least you will know when you meet your doctors.

Doodles2013 profile image
Doodles2013

Thanks all. I am also going to try some herbal anti inflammatories as I really want to get off the pred and associated meds. I will see what the doctor says though.

PMRpro profile image
PMRproAmbassador in reply toDoodles2013

We know you want to get off the pred etc - but it isn't that simple. There is nothing herbal that will safely replace pred - just because they claim to be "natural" doesn't mean they are always safe. If there were - this forum wouldn't exist because we would all be using them.

Grammy80 profile image
Grammy80

I'm just chiming in with the others....pred is a double-edged sword, no doubt. I've been working on getting down for four years but I would not risk rushing. Pred certainly has plenty of side effects, but the flip side is that not taking it....has far more serious consequences. What does your Doctor say? Sure, it is tough but don't rush and harm yourself. 💞

Bcol profile image
Bcol

Morning, not much in your profile, but I'm assuming that you have had PMR and taken Pred for around eighteen months. To have got as low as 2.0mg or 3.0mg in that time is good going. However, your present symptoms show that you have probably undershot the dose that is needed to keep the inflammation under control. If you stay on a dose that is too low, the inflammation and symptoms will build up and you will end up back where you started from. As DL says, follow the flare protocol and then come back to 3.0mg and then follow a slow taper downwards.

I use a 0.5mg DL five week taper, (plenty of info about tapers in the FAQ'S) which I find works well.

Getting lower when in this lose dose territory often takes longer than reducing from the higher levels and it is something that cannot be rushed.

Doodles2013 profile image
Doodles2013

Thanks. I was just doing the resort the doctor gave me. I went up to 5mg yesterday and feeling much better so will taper slowly from that

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