Tapering meds question

[Alloty]

When tapering with GCA is just followed the plan blindly, not realising that the increase in pain was the start of PMR. When diagnosis confirmed several months later I started my PMR journey. I have again followed the standard slow taper and when down to 10mg a day started reducing by 1mg a month. I’m now on 8mg but increasing pain in both hips and lesser pain in shoulders. Now wondering if this is going to lessen as I continue to taper or if I should increase for a while. Any advice welcome.

[PMRpro Ambassador]

You are not tapering relentlessly to zero - you are looking for the lowest effective dose of pred at any given stage. I'd say yours at present is at least 8.5, possibly 9mg. If so - if you stick where you are, things are likely to only get worse and then become harder to get under control.

[Groggrim in reply to PMRpro]

I am not qualified to advise like Pro is but I do agree with what she says. I recently tapered to 6.5mg and found symptoms returning. Returning to 6.75mg did not help much but once I went back to 7mg the tide turned and I felt better. I think our bodies know better than we do what they need. However, after a couple of weeks I intend to try a slop taper downwards again.

[Angelsmummy in reply to Groggrim]

Groggrim,PLEASE don’t try a SLOP taper( I refer to your post ) Haha ,sorry couldn’t resist!….😜😳🤣😂

[Groggrim in reply to Angelsmummy]

🤣🤣🤣🤣🤣🤣Perhaps I'll start something new 😉...........

[DorsetLady PMRGCAuk volunteer]

When tapering with GCA is just followed the plan blindly

That's rather unfortunate turn of phrase... .. 😲 good job I've retained my sense if humoured if not my sight!

Sounds as if you require more Pred rather than less at the moment ... and I doubt pain will go away on its own...

maybe treat as a flare - advice in link and one back under control then reduce by 1mg every 2 months [0.5mg per month if easier] -

healthunlocked.com/pmrgcauk...

[Alloty in reply to DorsetLady]

Having permanently lost vision with GCA I apologise for the phrase, relentless might have been more appropriate. Thanks for your advice. Will try treating as a flare and see how it goes.

[DorsetLady PMRGCAuk volunteer in reply to Alloty]

Me - Same situation - and I found it quite funny ( didn’t mean it as a reproach) but there may be others that don’t have same sense of humour I have ( in fact I know there aren’t!) 🤣😂

[Groggrim in reply to DorsetLady]

The written word can be unforgiving and misunderstood. I have got into bother this way in the past.

[Angelsmummy in reply to Alloty]

Haha,I found it funny even though I lost sight in one eye because of negligence.Sometines humour is what keeps us going eh?xx😂💐💐😜

[Groggrim in reply to Angelsmummy]

Depends how sensitive the recipient is. I used to 'engage mouth before putting brain in gear' when I was younger. My father often called me on it 🙄

[Golfers1]

Hi, you sound like you are in a similar situation to me. I have GCA/PMR and it’s difficult. I managed to reduced to 7 mgs pred and was fine for at least 8 weeks and started to reduce slowly as per dead slow regime to 6 mgs but then got pains in neck and top of shoulder so have gone up 5mgs for 10 days and today have reduced back down to 8 with my fingers crossed. My experience with rheumatologist is they say just go back 1 mg which doesn’t usually work.

And I dread having to go back to 40mgs again !,

[DorsetLady PMRGCAuk volunteer in reply to Golfers1]

Unlikely you need to go right back to 40mg - but as you say, the odd mg is not going to do it..

[Golfers1 in reply to DorsetLady]

I had a similar situation a year ago and advice from rheumatologist was to just go up one mg and then I had vision problems and ended up as an emergency at the eye hospital with visual problems and blurring of sight in my right eye so was straight back to 40 mgs which was the right thing to do obviously. I think I just live in fear of that happening again although I hear it’s unlikely as it’s three years now since diagnosis.

[DorsetLady PMRGCAuk volunteer in reply to Golfers1]

Yes it is unlikely - but certainly not unknown.. Had Rheumy been a bit more sensible at the time…it might not have been necessary to go that high.

[Golfers1 in reply to DorsetLady]

It’s hard to understand why, when so many of us struggle with tapering, the clinicians aren’t more flexible and dare I say knowledgeable about the situation.

[DorsetLady PMRGCAuk volunteer in reply to Golfers1]

Absolutely corect!

[PMRpro Ambassador in reply to Golfers1]

Part of it of course is that there a lot of us on here, far more than any single doctor is likely to see in a career - though there are some who claim to have seen "hundreds" of patients with PMR or GCA,

[Angelsmummy in reply to PMRpro]

Perhaps they suffer from double vision!x😳💐

[Groggrim in reply to Golfers1]

I have also had the return of neck and top of shoulder pain and gone back to 7mg. I was diagnosed by a rheumatologist with a shoulder impingement in addition to 'suspected' PMR. For this I was recommended physiotherapy by the GP. I had my first session of physio yesterday and I am not convinced it is the way to go but I will see it through. I can't complain or reject it if I don't try

[Angelsmummy in reply to Groggrim]

This time of year,lots of neck,shoulder pain in people,maybe being so intent on getting outside jobs sorted.Only a thought!…….😜.

[Groggrim in reply to Angelsmummy]

The only outside jobs I do, Angelsmummy, involve filling the garden bird feeders and hanging out washing. Hubby does all the garden work, it is his happy place 🙂

[Angelsmummy in reply to Groggrim]

If I left my garden to OH it certainly wouldn’t be MY happy place,bless him.😱👎🏼

[Groggrim in reply to Angelsmummy]

When my hubby took early retirement after a minor breakdown he took up two interests, gardening and running. Both are therapeutic and self taught. I am proud of him for orchestrating his own recovery. He keeps a lovely garden for us, albeit small, and has successfully completed a half marathon with another planned for this autumn 🙂

[Angelsmummy in reply to Groggrim]

Well done to him!If he has any spare time do you reckon he could come and help me with my just under an acre?😃😜

[Groggrim in reply to Angelsmummy]

I'm sure he would be delighted. Unfortunately he's a bit busy just now 🙃

[Angelsmummy in reply to Groggrim]

👍😜