Update having seen GP : Saw GP yesterday bloods... - PMRGCAuk

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Update having seen GP

26 Replies

Saw GP yesterday bloods lovely she said. Now wants me to taper from 15mgs by 1mg for two weeks and then further 1mg for following two weeks. Thoughts please.

26 Replies

It's not unusual for them to suggest this schedule and for some it can work. I would say drop by 1mg and see if you get any symptoms returning after 2 weeks. If you have then obviously don't reduce again and perhaps try a dead slow nearly stop taper. It cam take a little longer to helps stop steroid withdrawal. You need to ask your Dr about managing on a slower taper and perhaps print out the explanations and plans that are in the pinned posts. Good luck!! Again!

in reply to

Thank you your comments are very much appreciated. I will see how it goes and update accordingly.

in reply to

I am sure others will have opinions! I seemed OK with mo thly drops of 1mg until I hit 8mg then a flare really showed itself which now I know had been bubbling since 12mg. That was my pre forum days!

in reply to

Thank you so much for your comments very much appreciated.

Hollyseden profile image
Hollyseden in reply to

Thankful for this forum. Great advice given here

in reply to

As I've mentioned in my previous messages Patricia23. I started yesterday to taper from 10 mg daily down to 9 mg for a month, then 8 mg for a month, etc etc. Do hope when I get to 8 mg I don't get a Flare Up, dreading that as will then I guess go back to 9 mg....hard to know how to manage the steroids without keep consulting my doctor....time will tell !!

Noosat profile image
Noosat in reply to

I dropped 1mg a month until reaching 8mg then slowed to half an mg per month, I am now down to 4mg, which I have stayed on for almost 2 months as I am very stiff in my legs and extremely fatigued in afternoon. However, hope soon to drop to 3.5mg

in reply to Noosat

I was at 6mg a year and had stiffness and fatigue. Increased to 7mg after a week if 10mg and voila the stiffness and fatigue disappeared.

Noosat profile image
Noosat in reply to

Really don't want to increase because of elevated eye pressure, so just slog along hoping all will get better over time. I'm hoping the adrenals will have an "aha" moment and start working a little stronger.

SheffieldJane profile image
SheffieldJane

See how you get on. I needed a 4 week taper of 1 mg, and 0.5 after 10 mgs and I still stalled at 7 mgs. We are all individual though, and you trust her, so give it a go.

in reply to SheffieldJane

Thank you for your comments much appreciated I will update as and when.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Personally I would always prefer a monthly reduction plan rather than 2 weekly one. You are then sure the existing dose is keeping the lid on things before you reduce it. In some people it can take up to 2 weeks for a flare to appear, and if you’re one of those you can find yourself in trouble.

The 1mg a time is good though! Until you get to 10mg - and then maybe time for a rethink.

in reply to DorsetLady

Hi Dorset Lady, Back to updating my tapering. I dropped 1mg from15mgs for two weeks all seemed ok so have now reduced further 1mg down to 13mgs. I have been quite exhausted and this morning experiencing PMR symptoms again. My Doctor will be phoning me on 26th February for a report as to how I am managing. My instincts tell me to up my dose back to 14mgs again for a further two weeks. Your advice would be much appreciated.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

If it were me I’d do exactly that. As I said earlier, 4 weeks at one dose is really the better option - I know many doctors don’t think so , but maybe you’ve just proved it. You might be one of those that needs a slower taper.

However, you must also be aware that sometimes when you drop from one dose to the lower one your body doesn’t like it so you get steroid withdrawal symptoms which for some people is exactly like their PMR returning. - last 2-4 days Makes life very difficult sometimes to know what’s what.

This time around I’d err on the side of caution and go back to 14mg - because you don’t know exactly what’s happening.

When you speak to Dr try and persuade him you want to do monthly reducing - at 1mg a time. And maybe even think about a slow tapering plan such as this - not everyone can do a textbook reduction - in fact most can’t !

healthunlocked.com/pmrgcauk...

Good luck

in reply to DorsetLady

thank you for your advice I am of the same opinion so I will go back to 14mg for a further two weeks and see what happens then. I will discuss with Doctor on the 26th. thank you so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Like most things, if you get good control in the beginning it usually means an better outcome. Not always of course, but if you have problems early on you’re likely to problems all the way through.

I think the issue is, many doctors don’t understand PMR, and don’t understand how Pred needs to be administered for it - they are used to a short treatment for illnesses like asthma or COPD - not long term like ours.

HeronNS profile image
HeronNS

Depends on you really. I was fine with 1 mg per week for the first few weeks. The taper to 9 mg was a step too far, so I stopped there, went back to 10 for about three weeks, then started using the dead slow method (I did ask my doctor's permission but I was going to use it anyway). However, context is important. I had no other significant health issues, I was very thin, I appear to metabolize pred very efficiently and experienced 100% relief of all pain within three days of starting pred, including non-PMR related osteoarthritis. Because I turned out to be somewhat vulnerable to some of the hidden possible pred side effects I was very pleased to be able to taper fairly expeditiously. But as of 10 mg I tapered very slowly, 1 mg per month, and when very low half a mg. And had to stay around 2.5-2 for a couple of years while PMR continued to simmer away.

Everyone on here will have had a different experience, but I don't think you should be afraid to start a taper. The inital advice from your doctor seems sensible to me. Just be alert to any return of symptoms, however slight, especially if they don't disappear by the end of each fortnight.

in reply to HeronNS

Thank you so much for your advice and experiences. I will see how it all goes and update as and when. I always find your posts very interesting.

diana1998 profile image
diana1998

I would be cautious. Drs love to taper fast, then wham.. If you can't reduce 1mg every 2 weeks, try every 4 weeks. I did half mg per month with no pain under 10mg. Gets harder around 5mg.

in reply to diana1998

Thank you for your thoughts Diana

T2305 profile image
T2305

Hi, I started on 15 mg, tapered down to 4mg, 1mg every 28 days, got to 4mg, flare up, up to 10 mg, tapered down to 2mg, flare up, up to 5mg, now going down by 1/2 mg each 14 days, now down to 4 mg, so far so good.

T2305 profile image
T2305

Have you joined a local PMRGCA Support Group, I have set up, with a lot of help from PMRGCAuk, we meet once a month, Whitstable PMRGCA Support Group, my members say they get a lot of support talking to other members about their experiences, and suggestions.

Thomas45 profile image
Thomas45

Your General Practitioner will be well educated in how a human body works, but he doesn't know your body as you do. Personally I think his plan is more than optimistic. My GP told me that I knew my body better than he did, and prescribed me 6monthly supplies of prednisolone and told me to reduce at my own rates. He said to ask for more supplies when I needed them, and it took me much longer to reduce,but without any flares, using the Dead Slow method.

in reply to Thomas45

Would be interesting to know your dead slow method Thomas....I think that's what I am doing now. Started in Dec 2019 on 10 mg that took all symptoms away within a couple of hours. Stayed on 10 mg for 6 weeks, then told by rheumatologist to start to taper by 1 mg a month. Yesterday 9 mg. Only thing that concerns me is I will be at 4 mg in June (if I make it that far) and will be going on holiday abroad. What would be your advice Thomas. Also concerned about GCA on reduction so would need protection from that too. Not sure what sort of mg would be prudent to take away with me.

Anne

PMRpro profile image
PMRproAmbassador in reply to

The Dead Slow he refers to is the Dead Slow Nearly Stop approach we talk about on the forum - not trademarked, maybe it should be! It goes far beyond "1mg a month" so that the introduction of the lower dose is spread over weeks - not hours ...

healthunlocked.com/pmrgcauk...

DorsetLady has an approach with a similar concept.

Thomas45 profile image
Thomas45

Yes, Dead Slow Nearly Stop is. What I meant with the stress on going at the rate your body will accept, so it's not that you necessarily change medication every week, if you're not ready for another decrease.

When it says, for example, 2 days new dose, 5 days old, then I mixed in the 2 days with the five, for example Sunday and Wednesday new dose rest of the week old dose.

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