Advice please

I have been on preds for over4years I have tried many times to slowly come down but every time I get down to 4mg all the symptoms come back .My Dr sent me to see a rheumatologist who said I should reduce 1mg a month and she would like me to come off then now down to 2mg have been for 3 weeks now and my aches and pains have all come back all over arms neck and shoulders back legs ,she did say I had some arthritis .i am dreading going down to 1mg i take co codamol at night ,any advise please

13 Replies

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  • Hi jillianb

    You are at a level now where it can be more difficult to reduce, have you considered reducing by 0.5mg instead of 1mg & using the Dead Slow Method advocated & tried by lots of us on here?

    My Consultant recommended coming down by 0.5mg when l reached 10mg

    Maybe you could consider going back to 3or4mg until you feel better again & then reduce by 0.5mg maybe using one of the very slow reducing methods?

    Very Best Wishes

    Mrs N

  • Thank you I think I will have to before this I have reduced.1mg in 7weeks is that slow enough do you think but then I still get a lot of pain when I get down to 4mg

  • I think maybe you need to go back to 4mg until you feel better, you can't keep reducing if you are still symptomatic.

    Once you feel better then think about reducing by 0.5mg

    I'm sure PMRpro will reply shortly & she'll either send you a link or point you in the right direction of the Slow Taper.

    Best Wishes

    Mrs N

    PS it may be that you need to stay on 4mg for a while until things settle again.

  • When I went to see my Rheumy she told me not to be surprised if I ended up taking 5 mg for the rest of my life as it is so difficult to come off entirely. Don't know if she was being realistic or pessimistic! She did want me to reduce down as quickly as osiible using the dead slow method, so I don't think she was being 'gung ho' about it. Hope this helps.

  • To be honest I'd rather have a doctor like that who knows I may not get off altogether than one who tries to force me lower. I think it was realism - and if that was what you expected, managing to get lower or even off would be a bonus.

  • Hi,I am just the same,every time I get down ,I can hardly walk,it's very depressing.The Rheumatologist started me on Azothioprine as well, it I feel dreadful ,just waiting for next bit of advice,good luck

  • Hi,

    Your Rheumy may want you to reduce 1mg a month and come off Pred, but she not the one having problems is she?

    As Mrs Nails says, 0.5mg a drop is better, 1mg is too much when you get to single figures, especially below 5mg. Plus the DSNS or similar slow taper rather than an overnight drop, much easier on body.

    Because your adrenal glands have to kick back in after being suppressed by higher doses of Pred, some recommend staying at 5mg for a few months to allow that to happen.

    Some of your pain may be down to arthritis, and the cocodamol may help that, but obviously it won't help any PMR pains. Plus arthritis is more specific, not all over like you say.

    4mg may be "your" level required to control your PMR at the moment, so it may not be possible to get below that for the time being. I would hazard a guess it's a combination of that, and your adrenal glands not up to speed yet.

    Think you need to discuss with doctor and/or Rheumy explaining your problems, suggesting perhaps you should go back up and let things settle before you try reducing again.

    Take care,

  • Nothing really to add to what DL has said. The rheumy may want you to come off pred - but why and it isn't her pain?

    PMR lasts as long as it lasts, and contrary to popular belief amongst many doctors, the average duration of PMR is more like 5 than 2 years. An Italian study a few years ago on a group who had been given methotrexate showed that 1/3 of patients still required pred 6 years after diagnosis (and that mtx doesn't result in fewer pred-associated side effects even if it allows a lower pred dose). That certainly fits with what I have seen on 3 forums over a period of 8 years. There are fewer 2-year people, even amongst the ones who arrive on the forum immediately after diagnosis and stick around even while reducing relatively easily.

    ncbi.nlm.nih.gov/pubmed/185...

    My local consultant regards this group as being led by the "Godfather of PMR" - they do know what they are on about even if this isn't the biggest study in the world.

    I've been on pred for well over 7 years, I have been down to 4mg but getting further just meant problems. I had a nasty flare shortly after the last time I tried - which sent me back to 15mg and now I'm back to 8mg. No-one here is worried.

    Often pushing to reduce merely induces a big flare in symptoms, requiring a much higher dose to manage it and tapering all over again. You can't assume you can go straight back to where you were comfortable before the flare. That is only possible if the flare was due to overshooting your "right" dose and you realised immediately. That is a very different situation.

  • hi jillianb i find co codemol relieves my pains when i get them iaverage between 4-6 perday every day more if needed up to 8 i take 1 am and therest as needed cant help about preds as i am on methotrexate and preds which work for me but not everyone all the best bposiv

  • Just briefly to let you know, jillianb , I too have been on Pred. for just over 4 years but never got below 10 without a flare. I have flared countless times as always trying to get lower, but, as my lovely Rheumy said- the PMR doesn't seem to know it should be going and it hasn't read the textbook! It is what it is and no amount of wishing is going to make it go away until it is ready, frustrating though it is. I do use co-codamol too,but that only helps the arthritis I have now developed . I have also had the dubious honour of trying all 3 recommended DMARD's with no success either.

    Rheumy has just referred me for a steroid injection into the hip joint with ultrasound to hopefully help with my OA Hip pain which is currently excruciating. I am going to have it on 18th Feb. Has anyone else had this done as I am worried it will really hurt and may not work??

  • Suzy i had pmr for two years and it went a few months later i got rhumatoid arthritis and ive had it 15 terrible years. Ive never taken drugs for either other than ibuprofen by the bucket load but that damaged my kidneys i have a gfr of only 60 so i went on pred at 20mg reducing to 5mg if i have a flare i go back to 20 and reduce. Its a pain and the higher doses wreck my nerves but im terrified of the hard drugs all that monitoring appoitments etc they only experiment this way im better in control my rhumy is happy with me. My bones were ok on a scan too 🤗

  • Hi i know exactly im the same with r/a i cant get below 5 mg and i keep getting ups and downs on that at the moment my shoulders feel like golf balls it moves around too though its pretty much everywhere. If i tried to reduce id have bad times and when i do my rhumy told me to go to 20mg and work down. I hate doing it as it makes me so hyper and i sleep badly on a good night. Fortunately i had a scan and my bones were good. Ive never wanted to go on the big stuff i hate blood tests and doctors pred allows me to treat myself 😃

  • Thank you everybody for your good advise going to see my GP tomorrow

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