How slowly should I be reducing?: Greetings all... - PMRGCAuk

PMRGCAuk

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How slowly should I be reducing?

Mike1964
Mike1964

Greetings all from sunny Turkey 😎. Boy does the hassle of PMR seem easier when all you have to do is lay on a lounger, I really should have tried this ages ago. Some advice please, I have been on 15 mg of pred for 3 weeks, my GP then told me to reduce to 10 mg on the Monday and to stay at 15 the rest, the following week the Monday and Tuesday etc. In some ways the horrors of an awful PMR attack have joyfully dimmed into my subconscious but certainly not to the extent that I wish to repeat it! She has made a referral to a rhummy but unless the appointment letter has arrived whilst I’m away not sure how long until I see one. I guess my question is; does this reduction seem a little quick? As ever, all advice very gratefully received.

43 Replies
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PMRpro
PMRproAmbassador

She has at least made it a bit slower by telling you to do 1 day the first week, 2 days the second and so on. But personally I still think it is too fast and I would try to space the increasing days with old dose days between. I really feel 5mg is a big step to ask your body to switch between from day to day at this level - it would be fine at GCA doses which are much higher.

I'd try it but with 12.5mg as the new dose not 10mg and see how it goes. If that works you will have got down a good step. Three weeks at the starting dose also seems not long, 4 to 6 weeks is more usual. All depends how well you feel - but you aren't in a "normal" situation so the warmth and rest may be hiding the truth. How long are you there? I wouldn't want to be flying home on a new dose day...

Mike1964
Mike1964 in reply to PMRpro

Thank you Pro. Have had 10 glorious days, sadly only 3 left 😭. I’ve just checked my tablets as they are all 5 mg, you can (With very good eyesight!) break them in half, think I shall have to request some 1 mg ones. I shall take your advice and try the 12.5. I must admit I do feel pretty good, can’t believe the difference the pred has made. My biggest thing is energy, I have 2-3 good days then bang, a day sitting down doing nothing, a very strange experience, I guess looking back I came from a family of work-a-holics, sitting still was certainly not on the menu!

PMRpro
PMRproAmbassador in reply to Mike1964

At a guess you do far too much on the 2 or 3 good days - and the bad day is pay-back time! Spread the activity more gently and you may manage to avoid the bad days!

Have some reading for the sunlounger:

healthunlocked.com/pmrgcauk......

Are the faces of the pred tablets slightly rounded rather than totally flat? If so, lay them on a hard surface and place your thumbs on opposite sides and pred down from above. Most such tablets will break into 2 neat halves. If not, most chemists will sell you a pill cutter. However, if you are that close to going home, WAIT!!!!

Mike1964
Mike1964 in reply to PMRpro

Thank you Pro, I really do appreciate your help and support.

Pym1
Pym1 in reply to PMRpro

I carry a pair of nail clippers in my toilet bag and they double up as excellent pill cutters!

Mike1964
Mike1964 in reply to Pym1

Hi Pym, good tip, thank you.

Yes! That's a very drastic drop and your body is likely to object. Check the pinned posts for a tapering schedule and think about only going to 12.5. Many people can handle a drop of 2.5 until you get to 10mg and then reduce by 1 mg. each time. Also, by spacing out the lower dose days, shortening the number of higher dose days each time as is in the schedule is more sensible than what was suggested. Good luck.

TooSore
TooSore in reply to TooSore

Typed at the same time as PMRpro. At least I've learned something 😄

Mike1964
Mike1964 in reply to TooSore

Thank you Sore, tiss a cruel life, now I find my eyesight is that dodgy I need a magnifying glass to try to break the tablets in half! 🤓

That’s a lot of bouncing around. Personally I’d rather drop to 14, deal with any SW in first week, then stabilise at 14.

All that upping and downing, your poor body won’t know where it is! And interpreting the effects might be difficult.

Mike1964
Mike1964 in reply to Soraya_PMR

Thank you Soraya, I must admit it all seemed quite straightforward in the surgery, it was only after I thought ummm, hence the post. Thinking I will try dropping by 2.5 and see how it goes.

My experience: five weeks at 15, then drop by 1 mg per week until discomfort returned. This happened at 9 mg. Went back to 10 for a couple or three weeks then started dead slow method, which I've followed since. In retrospect I think this worked very well for me. I was completely pain free within days of starting so had a full month of feeling really well before any taper was begun, and I have never at any stage had to reduce by more than 1 mg at a time. The only instruction my doctor gave me was to stop tapering if I felt pain return, then she went on holiday. It was from Patient forum that I learned I could go up to the last dose where I'd been comfortable. Because I was only reducing by 1 mg at a time it was easy enough to know what level this was. I did, in fact, accomplish a reduction of 5 mg in five weeks before having to start a slower taper and I don't think any doctor could object to that. I know that some people aren't ready to reduce quite that quickly at the beginning. I think toggling down by even 2.5 at a time, even with the days reverting to earlier dose, would be really really hard and would never have worked for me. Could have set me on a much more difficult path than I've had.

Mike1964
Mike1964 in reply to HeronNS

Thank you Heron, some really good advice. Could I just clarify, do you mean you reduced by 1 mg, so 1 week at 14 then the following 13 etc ( Wish I could blame predhead but sadly the fiendishly strong Turkish beer I consumed last night may be effecting my ability to understand logic!) 🤪

HeronNS
HeronNS in reply to Mike1964

Yes, that's exactly right. I haven't actually heard anyone else doing this, so I think it may be unusual, but from hearing other people's experience I think it is a very good method. It could be tweaked. If you felt fine going from 15 to 14, then carry on. But if you felt discomfort, and at that level it's most likely to be pred withdrawal rather than PMR, then just wait a few more days. For ease of keeping track I always used the same day of the week to start a taper, even when I began the dead slow one. So you could, for example, stay at 10 for two weeks instead of dropping to 9, if you felt a "niggle". I think if I'd done that I'd have saved a few weeks because the taper to 9 would have been more successful the first time. Feeling the "niggles" is a warning to slow down. More specifically and honestly, I felt "niggle" at 10, but being early on in the journey and in denial, and still not knowing that pred wasn't a cure but only controls the symptoms, I carried on down to 9 mg. I then experienced increasing pain over about 9 or 10 days. It was going on the forums which rescued me. I learned I was not going to be done and dusted in three months as I'd expected. I learned it was okay to go up to my last good dose, stay there until stabilized, and then begin what we call the Dead Slow and Nearly Stop method. In one year my dose was down to about 3 mg. I've been hanging out in that region and a little lower for most of the last two years, so it's not over yet. But when I read about people still struggling at higher doses after a similar length of time, at least in part because they were messed about in the beginning with much too ambitious taper schedules, I feel very lucky to be where I am today. Always remember:

Symptoms are king.

And as PMRpro says, it isn't slow if it works.

HeronNS
HeronNS in reply to Mike1964

Where in Turkey are you? My only experience in Turkey was in November! But we loved our brief time there, mostly Istanbul and Ephesus. I would love to go to Cappadocia but I fear adventurous holidays are beyond me now.

Mike1964
Mike1964 in reply to HeronNS

We are in Side, it is near Antalya. What a beautiful location, people and weather! It really is the best time to visit, everywhere is green, is pleasantly warm without you frying, have even had a swim in the sea! (Could be why I’ve died today, boy this pacing yourself bit is no fun ☹️)

Thank you mike1964, as this thread answers my own question today. My Dr wanted me to go from 15 to 10 and I negotiated 12.5 (she wasn't really interested in my forum research but said 12.5 for four weeks then 10 for four weeks but reluctantly agreed I could call if I had pain at end of four weeks)!

HeronNS
HeronNS in reply to Pongo13

The "rule" is no reduction of more that 10%. 2.5% would be a good reduction if you were at 25 mg. Really, by 15 mg no one should be expected to reduce by more than 1.5 and 1 is preferable. At least you are being allowed to take your time. But why not 1 mg per week as long as it works? In fact my reduction of 1 mg a week turns out to be faster than 2.5 every four weeks!

There is pain and there is pain. If you, or Mike1964 feel pain increasing at any time during the taper, that is almost certainly a sign of PMR activity, not just pred withdrawal symptoms. Four weeks of persistent pain, especially if it increases, seems too long to wait. I think you'd know within a couple of weeks whether your dose was too low.

Pongo13
Pongo13 in reply to HeronNS

Thank you heron. Even my hub says this makes sense and he is voice of reason. I was alarmed when Dr said "we need to get you off steroids". This was a another telephone chat (haven't seen her in flesh since Jan) so if I do need that chat, I will organise face to face and print off this and other relevant info. I will see how I go in the meantime. So obliged to you for this help.

PMRpro
PMRproAmbassador in reply to Pongo13

" I was alarmed when Dr said "we need to get you off steroids"."

Quite rightly. What on earth is the point of them diagnosing PMR, for which the only option is corticosteroids for the duration, and then they start this nonsense? If you don't want the patient to use the only medication that works - why make that diagnosis in the first place?

medpagetoday.com/rheumatolo...

It isn't as bad as she thinks. And PMR also lasts a lot longer than she probably thinks (just under 6 years median duration).

Not putting you on pred or trying to force you off pred increases the risk of developing GCA - and then she will have to use a lot more pred than if she tries to prevent it.

academic.oup.com/rheumatolo...

These papers are not just patients opinions, they are from a few of the top PMR/GCA experts in the world who draw up the guidelines she is supposed to be aware of.

Pongo13
Pongo13 in reply to PMRpro

Thanks pmrpro I will get all this printed out in readiness. Also the hub is investigating consultants - but I told him you folk have better info and I'm thinking closest to Southampton area is the much mentioned Rod Hughes?

PMRpro
PMRproAmbassador in reply to Pongo13

If I lived in S'hampton I'd manage the day out to Chertsey whatever state I was in!!!!

There may be someone good locally - but you would have to ask for recommendations. My friend has a gem in Basingstoke - they communicate by email and only meet when it is necessary but have been together for several years!

Pongo13
Pongo13 in reply to PMRpro

Basingstoke is much closer! Any recommendations gratefully received! Be good to have a trump card if things go pear shaped!

PMRpro
PMRproAmbassador in reply to Pongo13

Have pm'd you.

PMRpro
PMRproAmbassador in reply to Pongo13

Oh - just heard she doesn't do private any more. My friend says get a referral and see. But RH you will be able to see quickly. Unless our recommendations are mounting up too fast!!!

Mike1964
Mike1964 in reply to Pongo13

Hi Pongo, glad to have inadvertently helped 🤓.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Totally agree with PMRpro on all counts -

Too soon,

Too big a taper

Space the lower dose days, not consecutive!

Wait ‘til you get home!

Get a pill cutter and/or lower dose tablets.

Mike1964
Mike1964 in reply to DorsetLady

Thank you Dorset 🤓

Thought you might be interested that I called Rod Hughes Sec. last Thursday and was offered an appt. Tues afternoon. He sees patients Mon am and Tues pm (private). Have not made up my mind whether to go. I live on the South Coast.

PMRpro
PMRproAmbassador in reply to joat

You must have felt you need something more?

joat
joat in reply to PMRpro

Think I replied to the wrong message, meant it to go to Pongo13. Bad Pred day?

PMRpro
PMRproAmbassador in reply to joat

It was the "I haven't decided..." that I noticed - given the chance, I'd be there like a shot!!! And there has to have been a reason you investigated.

But it is the way the nesting on this forum works - unless it says you have no idea who it is aimed at!

Hi Mike, I had similar start mid 2017 and thought pred was magic, so with docs suggestion/approval went to 10mg after 4 weeks and suprise suprise I couldn't move again. Back to 15 for another 2 weeks, 12.5 another 4 weeks, then 10 and after reading about dead slow stop method have got down to 8mg relatively ubscathed. Feeling a bit nervous about going down further as winter approaching, I'm in damp area in N Z North island and also want to keep flare free as planning trip back to Europe and UK in Sept/ Oct. I've learned so much from this site plus gained confidence in listening to and obeying my body. Not usually a great skill of mine. It was sooooo frustrating to be limited in what I could do, albeit relatively short lived (thanks to pred) in comparison with some who share their experiences. On another tack, the local hydrotherapy pool and hot pools were a godsend during the early agonising weeks. Talking to the scan technician the other, she seemed to give the impression there are quite a few people locally.... I wish you well in your journey and also wonder how many of us there are down under?

PMRpro
PMRproAmbassador in reply to Sunnyj

Why not ask if you can put up a poster in your local medical centre/hospital and see if you can get a support group going. It doesn't have to be official and speakers and stuff, that comes later, but meeting somewhere for a coffee and exchange of experiences can be just as useful and removes the "I'm on my own" feeling.

One tip - if you use email as a contact set up a separate email address so you can ditch it if necessary. One lady had a cheap phone to be able to give a phone contact. Booking a space/table at a public venue also keeps you more private.

Sunnyj
Sunnyj in reply to PMRpro

Thanks PMRpro. Practical and helpful as always. Yes, the alone feeling does kick in sometimes, even with good friends around me.

PMRpro
PMRproAmbassador in reply to Sunnyj

Friends are one thing - friends with PMR/GCA are a very different one, even if you don't know them as well.

Mike1964
Mike1964 in reply to Sunnyj

Hi Sunny, thank you for your very informative reply. So it’s not just me who struggles to slow down and listen then? 🤓 I hope you’re winter isn’t too cold and wet, mind you as I live in England I hope my summer isn’t either!

I bumped down 20 to 15 to 10 in a month then 1mg reduction every four weeks and just started on 4mg and have the first twinges of pain returning ( finger stiffness , upper arm soreness). Unsure if it's a temporary blip related to the latest reduction or whether I've just hit the level where the PMR can return. After receiving some great help and advice on here ( Thx PMRpro and others ! ) I'm a lot more cautious about rushing to reduce and more relaxed about staying on steroids longer.

Mike1964
Mike1964 in reply to diplodocus

Hi Diplodocus, thank you for this, it really does feel a bit of a lottery with reducing. I hope you’re pain gets sorted soon.

diplodocus
diplodocus in reply to Mike1964

seems to have stabilised after a week on the lower dose. definitely feels like i'm close to a limit tho as the reductions up until now have had no impact at all . If a doc told me 4mg was a safe long term dosage I'd stick on this for a while.

Hello Mike, just to echo others' comments, I think the drop is too steep. On diagnosis I started on 15mg and was told to reduce to 12.5 after 2 weeks. I did manage that, but when I was then pushed to drop 2 weeks later to 10mg I had a flare up which sent me right back to 15mg for longer than another 2 weeks. So, since that experience I've held out for the creep and go technique, and personally never drop more than 0.5mg at a time. I use the wonderful Dorset Lady's system of tapering over 4 weeks, then consolidating with a full week on the new dose, then see how that feels and either linger there for a bit longer or carry on tapering. My GP isn't completely with me on this I think, but she does acknowledge that the inflammation is as it is and can't be influenced - we can only manage the symptoms.

Mike1964
Mike1964 in reply to 11541stella

Hi Stella, thank you for this, certainly food for thought. I think once Home I will sort out my own reduction program, I suppose one advantage of an overstretched NHS is that I don’t have to see my GP very often, as long as she signs the repeats I’m ok to get on with it really.

Hi Mike, My rheumatologist has been dropping my dose by 4 mg at a time , and holding for .3 months. I think a 4mg drop is too much. She has added in methotex weekly at 15 which I think may be slightly helping musculoskeletal pain. I have been at 8mg now for about 3 weeks, and it hasn't been a great 3 weeks either. Although the methotrex doesn't bother me much.

I did have a one time consult with a vasculitis specialist who recommended tapering at 2mg.every three weeks. I am crazy with all the conflicting approaches by doctors. But even she missed the mark b/c my left eye went temporarily blind even with that slow and gradual taper.

Of course, we are all different in our physical and psychological responses to the illness and the meds. Also my blood counts have become abnormal; I think from steroids, but she insists I see a hematologist to make that call; my appt. is tomorrow.

Good luck.

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