Should I expect to feel discomfort for a few days each time I reduce Pred ?

[CarolF1312]

I've been feeling such benefit from 15mg Pred for last 4 weeks after 6 months of suffering. I'm walking average 4 miles a day and pretty much life back to normal apart from a few side effects from Pred. namely insomnia, night sweats, hot flushes

Today is my second day on 12.5mg and I'm feeling a few aches in my shoulders 🤔

I don't know if I'm hypersensitive worrying about reduction in Pred or I've just done a bit too much today.

Should I expect to have a few days of discomfort each time I reduce Pred?

[DorsetLady PMRGCAuk volunteer]

Some patients get steroid withdrawal symptoms for 2-4 days after a drop of medication until the body gets used to new lower dose.

Sometimes it’s the same as pre diagnosis - personally I used to just feel generally yuck! .. almost like PMT - irritated and a bit snappy!

Paracetamol might help.

One way of getting around SW is to use a slow taper - there are a few - this is just one -healthunlocked.com/pmrgcauk...

However if the symptoms take longer to appear say 5-7 days and don’t go away - it could mean the lower dose is not enough.

You might also have done too much - so have a more restful day tomorrow and see if that helps

[jessiem]

I reduced from 15 to 12.5 after 3 weeks and felt the pain in my shoulders and neck come back - although not as severe as pre-diagnosis. I went back up to 15 and will reduce again next week and see how it goes. Even at 15 I get slight aches in my shoulders at the end of the day but put this down to a PMR not pacing thing during the day.

[diana1998 in reply to jessiem]

I could only reduce 1mg per month from 15 to 10, then half mg monthly. Some people are very sensitive to drops. Slow but sure is the answer.

[Arflane97G]

I have been on Pred since sept 2019. I experience varying symptoms in varying degrees when I taper including increased stiffness around pelvic girdle, tiredness and grogginess in the morning. Drops from 9 to 8 And 5 to 4.5 were particularly tough for me. Going back to bed with a glass of water for an hour helps the grogginess, warm bath, yoga, gentle walks helps the stiffness and an afternoon nap is the only thing for the tiredness. Everyone is different but for me everything settles down after 4/5 days. Best wishes

[PMRpro Ambassador]

Many people do - and it is why we go on about small steps when reducing. Provided it remains stable and doesn't increase it is probably what is called "steroid withdrawal rheumatism" but if it gets worse - go back to the previous dose and try a smaller drop next time.

It usually lasts just a few days - but some unlucky people find it can lasts much longer.

[Gallagher1a in reply to PMRpro]

Hi thank you for that advice , I was diagnosed with PMR in October 2016,I was 58 at the time , I lost my Father in the Summer of that year, I am a self employed shop owner and this was a very stressful time for me and my family, I am convinced that the level of stress I was under brought on the PMR. My Mother suffered from it in her mid fifty’s (she is now 87) and when I began to feel unwell I mentioned this to the Docters straight away (I have a hunch that PMR could have some sort of hereditary factor) What I wanted to ask you about your comment was the “steroid withdrawal rheumatism’ because I have felt for a long time now that when trying to cut down the dosage my body is screaming out for more predisinol and the pain and discomfort I am feeling is not always the PMR but the withdrawal from the medication, I am on 2 mg daily now ,this is the lowest I have ever been on since I started the treatment, I have made an appointment today to have my blood checked , I had forgotten that you could get the 1/2 mg of predisinol and I am going to ask my docter for these .Just to advice other people who have just started this journey,it’s a long process! I found it was better for me when trying to reduce to take the higher and lower dose on alternate days (say 5mg one day then 4 mg the next ) for a month then try on 4 mg each day (although this didn’t always work and I would have to take 5mg a day or 2 a week before cutting down again .

[PMRpro Ambassador in reply to Gallagher1a]

You can't get 1/2mg tablets - you have to cut 1mg tablets.

PMR has a genetic component - in that people with a Scandinavian heritage are more likely to develop it but it is not hereditary, there is no specific gene that has been identified.

Here on the forum we recommend much slower approaches to tapering - such as this one:

healthunlocked.com/pmrgcauk...

You will find others here:

healthunlocked.com/pmrgcauk...

[katiemills in reply to PMRpro]

My GP gives me 2.5 mg tablets which save chopping 1 mg tablets in half. ( I haven’t managed to get below 9 mg / 8.5 mg).

[PMRpro Ambassador in reply to katiemills]

It only helps down to 2mg and you have to have 1mg tablets too. That's is the problem - no 1mg.

[carolBF in reply to PMRpro]

This thread is great thank you, I flared at 5.5 and had to go back and up to 10. Now struggling on 7mg, I will use this method

Stay safe

[CarolF1312]

Thanks everyone for your usual great support.

[Loopy65]

Weirdly (tapering from 20mg .. now on 8 @ 1mg a month as long as feeling ok) .. for me the ‘pain’ seems to come about 4 days after the drop and if I can put up with it then it settles again by about day 14. This then gives me a fortnight to be ok at that dose and then drop again. So far it appears to be ok but rheumy has been v clear that if pain continue either don’t drop until later or go back up to whatever dose I know worked last.

[Cyclegirl54]

Hi there, I find when I’m tapering especially in the first few days, is to keep myself in check viz a viz physical activities. The Spoons Theory is useful on those days! And a good crossword book! 🌸🌸

[Blossom20]

Hi Carol, how are you feeling now after the drop from 15 to 12.5? I know everyone is different but I'm wondering if I should do the same. I've only been on it for a week and a half and the doc wants me to have a blood test and talk about reducing next week! I'm sure it's too soon.

I'm glad to hear you're feeling better generally since you started the Pred...walking 4 miles a day! I can't even walk 5 minutes down the road without my muscles feeling like lead.

[CarolF1312 in reply to Blossom20]

Hi Blossom, today has been a good day managed a good walk and housework. I've developed a few aches in shoulders as the days gone on but not too bad.

Fingers crossed my body is coping on 12.5mg.

I was on 15mg for 22 days Rheumatologist plan was for 4 weeks but I couldn't resist trying to reduce earlier as I was feeling so good.

If you're still struggling I wouldn't consider reducing so soon. However, I'm a newbie on here and others are far more knowledgeable so please follow their advice. Good luck and hope you see some improvement soon.

[diana1998 in reply to Blossom20]

Drs always expect us to drop too fast. Doesn't work for most of us.

[Blossom20]

Thanks, it's nice to hear how others are doing. Well done, and keep in touch.