Pred dose

[choirsinger1986]

I started at 40mg of Pred, tapered slowly to 20mg in Jan and now at 8.5mg. I have reduced slowly half mg at a time from 20mg for 1 or 2 weeks, but have now got to the point where my shoulders remain painful at 8.5mg. Do I stick it out for another week or so at 8.5mg and then contact Rheumy ? I am not taking any steriod sparing drugs.

[DorsetLady PMRGCAuk volunteer]

Hi,

See you stuttered a bit in the past, and although you’ve only reduced 0.5mg a time, I’m guessing that as you are doing at one or two weekly interval you have gone below the level you actually need.

You need to be on current dose long to know it’s okay before you reduce, and one week certainly isn’t long enough, and sometimes a flare doesn’t appear until 2 weeks after you’ve started lower dose.

If that dose is too low, and you don’t realise it, and then reduce again….. it a recipe for disaster. Plus you are never certain the exact dose was enough.

Can you remember the last dose you had no shoulder pain? If so, go back to that and see if it goes again. If so, then good, but stay there for 3 weeks to make sure. Then when you return to tapering - at least 3 weeks at each dose in future.

If it doesnt work, then have a look at this post - covers what to do in a flare -

healthunlocked.com/pmrgcauk...

You might not appreciate the longer time at each dose, but it’s better than flaring - which just prolongs the journey and increases Pred intake.

[choirsinger1986 in reply to DorsetLady]

Frustrating this tapering isn't it- but better than flares yes. Thank you for your advice - appreciate it.

[DorsetLady PMRGCAuk volunteer in reply to choirsinger1986]

can be very frustrating....but as we're always saying, the tortoise won the race...😉

[choirsinger1986 in reply to DorsetLady]

Hope this tortoise can win the race eventually - and hopefully soon. Just had a pituitary tumour that may have had something to do with PMR - we'll see.

[DorsetLady PMRGCAuk volunteer in reply to choirsinger1986]

Maybe, best wishes for a good outcome.

[PMRpro Ambassador]

Below 10mg it is better to have 3 to 4 weeks at each new dose to be sure it is still enough. You are never reducing relentlessly to zero but looking for the lowest effective dose - the one that gives the same relief as the starting dose did. Sometimes all it needs is to abandon the current taper and go back to the previous good dose for a month before trying again. But there is no point trying to tough it out, PMR will always win and the tiny bit of leftover inflammation not cleared out by the pred will build up until you are back where you started.

[piglette]

From bitter experience I have found it is usually never worth trying to stick it out as the PMR always wins in the end.

[PuttyPenguin]

I agree with them all. As piglette says, PMR (and GCA) always win. Stay on the pred for longer at each stage and don't rush it. Wishing you well.

[cycli in reply to PuttyPenguin]

wow congrats. photojournalist. been reading back and the gung-ho get fit quick person of then has taken it well. if you read my profile you'll understand that I totally get where you are coming from. I feel the same and am now grieving for past life. I still want it back and am trying everything within the limitations of this disease to get there. I'm only 3 months since diagnosis but have both. we have to keep hoping . Hope for the best outcome but sensibly plan around what is achievable and build up from that. This is the first and only condition that has totally stumped my lifetimes approach to hurdles and obstacles. life changing is totally accurate. Good luck on the journey

[Mazxstitch]

Diagnosed April 2019, started on 15mg. After 18 months of "reduce 1mg every 2 weeks" I found this forum. Then did one of the slow tapers till I got to 6mg and was stuck.

At that point the Doctor's surgery came in board and , after blood tests etc, I was told to reduce by 1mg every 4 to 6 weeks. I am almost finished my 5th week on 4mg and it is working well.

[choirsinger1986]

Thanks for your reply.

It's difficult to know which taper to do - I have been reducing 0.5mg every 2 weeks (1mg per month) and has worked up to now. May need to go back to 9mg to get back on top of pains and stiffness.

It's alright comments stating we are not striving to get to zero pred but that's what we all want - I know that's not what our bodies might need but it is what I in particular want eventually.

I hate this PMR and all the side effects that go with the medication 💊!! Roll on zero pred !

[cycli in reply to choirsinger1986]

Hi choirsinger 1986. see my response to photojournalist above because it is also for you. I want to get to zero like you but may never achieve this. The hardest thing people of our go-getting persuasion have to swallow is that we can't make this disease respond to our will and drive. This may have worked for you in all past circumstances. It did for me. Be assured it won't work on this. That's why we are in the current pickle struggling. AAA Accept it for what it is, Adjust to how it behaves, Adapt your approach to life. That way we may find a way around it or even a better way of living. It doesn't give us a choice other than working with it. My mantra.

[diana1998]

Ooo... I always stayed for at least 4 weeks on every drop of 0.5mg. Then at 5mg, 2 months.

[choirsinger1986 in reply to diana1998]

Will try 0.5mg every 4 weeks thanks. Just seems it's going to take forever to get low - or come off them altogether 😔

[diana1998 in reply to choirsinger1986]

Absolutely no point stressing to come off pred. That in itself is stressful. Just go with the flow and try and be laid back.

[choirsinger1986 in reply to diana1998]

Will try to 👍