tapering problem

[Sukian]

hi, I am hoping for some advice

I have PMR and been on prednisolone for approx 18 months. After a few ups and downs with tapering from15 gms originally, I had got down to 10 , then after 4 weeks to 9, another 4 weeks to 8, then again four weeks to 7 but have been in so much pain since reducing to 7, not sure what to do next. Is this usual and is it best to return to a higher level and for how long. Like everyone else I want to get off the steroids asap, in particular because of the side effects ( I have lost much of my hair, sweating, skin thinning, muscle weakness etc).

I’d be grateful for any advice

[piglette]

You have dropped too low, below 10mg seems to be more difficult in trying to reduce. I went to 0.5mg drop every four weeks at that point. If I were you I would go up 5mg for a week to hit the PMR on the head and you could then drop 4mg if everything is OK back to 8mg where everything was fine last time. At around 7mg the adrenal glands need to start waking up which can sometimes introduce other strange symptoms.

[Sukian in reply to piglette]

thanks, I didn’t know about the adrenal glands starting to wake up at around 7mg

[piglette in reply to Sukian]

You may be fine and have keen adrenals, mine were lazy and liked being on holiday.

[HeronNS]

Below 10 it is helpful to use a slow taper method, not dropping overnight from one dose to the next, and also if possible tapering in half mg steps.

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

 HeronNS has given you link to tapering plans… and  piglette has mentioned responding to a flare - but here is a bit more info -

healthunlocked.com/pmrgcauk...

and info about adrenals glands which will also be coming into play shortly -

healthunlocked.com/pmrgcauk...

As for side effects of Pred, they should reduce as you get lower, but at 18 months in, your PMR is still very much alive, so you need as much Pred as you need,…

You are not reducing come hell or high water to zero… you are tapering to find the lowest dose that controls your symptoms.

[Sukian in reply to DorsetLady]

thanks very much for these links, they explain a lot. Can they easily be saved somewhere for quick reference?

[DorsetLady PMRGCAuk volunteer in reply to Sukian]

Yes easily-

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To retrieve - tap My Feed - top left in banner, takes you to new screen which gives options - News Feed, Explore and Saved, tap "Saved" and hey presto there it is /they are.

You will also be advised of any new replies provided you have selected that option in your email notifications - see profile (avatar) top right of screen

[PMRpro Ambassador]

The bad news you won't want to hear is that you aren't heading relentlessly for zero, you are looking for the lowest dose that manages the inflammation as well as the starting dose did. It sounds as if 8mg is "your" dose at present, It doesn't mean you won't get lower - just not yet. PMR is a chronic disorder that mostly lasts rather longer then the 2 years so many doctors tell patients. Pred is a management strategy not a cure and you have to achieve a balance of lowest possible dose but complete management of the inflammation.

What other medications are you on? It is quite unusual for pred to cause that much hair loss so maybe it was inadequately managed inflammation that did it or something else.

[Sukian in reply to PMRpro]

thanks for your reply. My other medications are Omeprazole, theiCal-D3, Folic acid, magnesium, glucosamine (as I’m told I have osteoporosis).

[PMRpro Ambassador in reply to Sukian]

Glucosamine won't sort osteoporosis - it may help prevent it developing but once it has developed really not sure it will.

Omeprazole can lead to hair loss. It isn't always the pred!!!

[Sukian in reply to PMRpro]

thanks, do you know is there anything else apart from Omeprazole that would protect the stomach lining.

[PMRpro Ambassador in reply to Sukian]

There is a whole range of PPIs like omeprazole and often one suits you better, you have to try. Alternatively, the older H2 antagonists like famotidine, cimetidine etc have a different mechanism so different adverse effects - and usually less of them,

There is always Gaviscon.

[Sukian in reply to PMRpro]

Thank you, that’s really interesting. I had no idea there were others, even Gaviscon. I will ask my surgery if they can give me a different one to try. Thanks again.

[Bluepin]

hi sukian

I went from 8mg to 7mg at the beginning of June . I was in a lot of pain initially and thought I was having a flare but for the last week I have improved immensely pain wise. I did take paracetamol and the occasional ibuprofen ( I know I shouldn’t ) and that seemed to get rid of the pain . I know they say that if over the counter analgesia works then the increased pain is not a flare

[Sukian in reply to Bluepin]

Hi Bluepin, How long did you go from 8 to 7. I did it for 4 weeks before ‘giving in’ as I felt as the pain was so bad and am now back on 8mg and hoping that will be enough. Following all the kind advice from everyone I hope to be able to stay at this level for another 4 weeks (more if necessary) and not go higher again.

31 7 23. Hi again, unfortunately I have had a really bad few weeks and have now gone right back up to 12 mg as neither 8 nor 10 were helping with the pain at all. To be honest 12 is not too good either but the pain does ease off later in the day .

Should I keep on with 12 for some time or should I even go right back to the start of 15, which obviously I really don’t want to do?? Any advice please

[DorsetLady PMRGCAuk volunteer in reply to Sukian]

In future maybe trying reducing by 0.5mg a time -and using a slower tapering plan -if not already -a few to choose from linked here /

healthunlocked.com/pmrgcauk...

[susieb627]

sorry I don’t have any answers but watching with interest as in similar situation but on 8mg!

[Azalea2009]

I am new to this forum and find it very interesting and helpful. Like you, I am on a reducing dose of Prednisolone, starting 10 months ago on 10 mg, which did help, but not eliminating pain completely. I have never been offered any agency in adjusting the dose and now feel it makes little difference, especially when down to 8 mg. My last assessment, I felt there was pressure to switch to Methotrexate, but the leaflet describing it and possible effects on major organs alarmed me and I’m considering coming off all medication, slowly of course, and managing the pain with relatively harmless, though relatively ineffective painkillers, like co-codamol. I’ve sort of got used to chronic pain, it’s not agony, more like white noise in the background. Any advice very welcome.

[DorsetLady PMRGCAuk volunteer in reply to Azalea2009]

You’d probably be better raising a new post to ask this question, not everyone will see this - but would say that you didn’t start on a high enough dose to get your PMR fully under control.

… as for trying painkillers to control your PMR’s inflammation could well lead to a lot more problems…Pred [at the correct dose].is really the only way.

[PMRpro Ambassador in reply to Azalea2009]

Yes - you probably need a new post for more than DorsetLady or me to see and reply.

Like DL I think you were never given enough pred to manage the inflammation to start with and it really is a bit silly to now want to add methotrexate since they didn't give enough pred. 15mg is the usual starting dose and often even that isn't quite enough.

What has your rheumatologist said in the past?

[Azalea2009]

thank you. I think I was started on 10 mg due to my “complex medical needs”, ie after a year of breast cancer treatment, chemotherapy, mastectomy and radiotherapy. I have now written a letter asking for an informed discussion about my options. I agree I should have posted my own concern, rather than via a reply to someone else’s, but I haven’t yet worked out how to do that - hopeless with this kind of technology!

[PMRpro Ambassador in reply to Azalea2009]

Top right corner on a computer, central at the top on a phone, you will see a blue box with Write and a pen icon. Tap on that and page comes up with Title in the upper box - briefly indicate what your post is about, DON'T use your user name, that appears automatically. Then write your post in the lower box just as you did here. And post it.