Is reducing pred a matter of self-control??!! - PMRGCAuk

PMRGCAuk

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Is reducing pred a matter of self-control??!!

Omanain profile image
Omanain

I was diagnosed in May this year and am currently on 9mg pred.

If the point of taking pred is to gradually reduce from the starting dose to the level we need to control the pain, why do some people cheer each other on and give praise for reductions as if we were junkies on a rehab programme?

We can’t keep the PMR at bay with willpower! If we are doing our reductions carefully, the dose we are currently on is the dose we need to keep the PMR pain under control and that's the dose we need. From reading posts on here it seems that one of the biggest problem people have is being rushed of their pred. Do you think this attitude encourages this?

I hope everyone knows that I do not mean any offense, I am just genuinely baffled.

73 Replies
PMRpro profile image
PMRproAmbassador

Don't worry - I think exactly the same. I think that attitude encourages some people to push where they shouldn't. I do say a lot that it isn't a race.

But it is a similar concept to wishing people luck on their way to collect exam results - bit late and it is nothing to do with luck is it?

I think it’s that nobody wants to be on this drug, but we know we need to be on it. Any reduction is great...maybe not a cause for congratulation, but it may be difficult to find the appropriate words.

I think the sentiment could be conveyed by something like this ‘Glad to hear you have managed to reduce again. Keep going, but remember it is not a race to zero’ Easier and quicker to put ‘Well done’!

I take your point Omanain and I am one of the principal offenders then. I think that tapering is hard and brave and often uncomfortable. There can be psychological dependence on taking a drug that once lifted you out of terrible pain and disability, a real fear of being in that state again. It is also a clever, nuanced thing to achieve correctly. It’s about reading your symptoms and tweaking your dose here and there thus avoiding the dreaded flare of symptoms - like snakes and ladders in a way.

I don’t know if you have experience of rehab but I guess that there is community and encouragement in that environment too. However, no one takes Prednisalone for kicks - it would be a very poor kind of high.

I am sorry that you have been irritated and maybe discouraged. There is no sense of shame at all in being unable to reduce. Most of us have been there. I hope that is not the impression cheerleaders like me have given. I wish you well and promise not to clap when you get off the Pred.

I agree - only the diet involves actual willpower which I am lacking in.

Darling Jane. Please don’t ever change. You bring so much support and hope to so many of us. You are just wonderful xxxx

Jane please read what I wrote to Oman. You must not think you have ever done anything other than be the most wonderful caring sweet person xxx

I've not had personal experience of rehab just what I've read in books and such like but I imagine they are always encouraging each other to reduce and stop whatever their destructive habit happens to be. I was a bit concerned that some posts were encouraging this approach. I don't know whose they were, I must have read hundred since I joined.

I do know you often post and are very encouraging and supportive and I would hate to think I have offended you.

I don't think even the weight increase is totally a matter of will power. The hunger can be ferocious, so take heart! x

Ah but the disciplined amongst us have even changed their cravings to healthy ones - 21 days to make a new habit.

You haven’t offended me, you’ve just made me think, which is no bad thing.

Well don't think too much Jane! You are doing a marvelous job, Always such kind words!

Oman darling I think it’s more of a celebrating with the person that they have been able to reduce. It’s about saying they see the fear and struggle behind reducing and applaud any success. I honestly have never seen anyone egging others on xxx

Also Oman I have to say I have been grateful for encouragement to reduce as I’ve been told by my rheumatologist that the smaller dose of pred will almost certainly control my PMR and my dreadful side effects will ease. I am scared of reducing so I’ve been glad of positive reinforcement xxx

Omanain profile image
Omanain in reply to Daisychain12

I think the advice we get here is far better than most of us get from rheumatolgist and doctors.

I have to take my rheumatologist on in November. I want him to approve the DSNS tapering plan and stop trying to get me to take MXT. None of this would I have known about without this site.

Good luck with yours. xx

Xanthe12345 profile image
Xanthe12345 in reply to Omanain

So I don’t really understand your earlier post!

Xanthe it’s part of it all. We are all struggling to negotiate this. Xxxxxx

Daisychain12 profile image
Daisychain12 in reply to Omanain

Oman darling I will be invisibly by your side encouraging you. Xxxx

Omanain profile image
Omanain in reply to Daisychain12

Many thanks x

Yes. I found that a very interesting post. I am nearly 4 years into PMR, and have been following this forum all that time. I have not had any flares and have been able to reduce very slowly off my own bat, without feeling the need to refer to my GP.

I think part of the problem is the advice given by some rheumatologists and GPs (certainly not all). I sometimes shudder when I see the tapering plans being pushed onto certain patients. As we know PMR will take its own time. I will be pleased if I do get down to zero, but that's all I'm prepared to say at this stage.

Paddy

Omanain profile image
Omanain in reply to Charlie1boy

I wish they would just put my pred on repeat prescription and let me get on with it! After all, so long as we don't develop any symptoms other than PMR there is little they can do to help us. All we need is a good understanding of how to taper and it seems for the most part (not all) the advice we get here is better than we get from rheumatologists or GPs.

Not only how to taper but what to take to protect our bones and the very latest information on MXT and AA.

piglette profile image
piglette in reply to Omanain

What did they say when you asked?

Omanain profile image
Omanain in reply to piglette

I haven't asked anyone yet, I'm doing my own thing! See my GP tomorrow, he is responsible for prescribing the pred so I need to convince him or he won't prescribe enough. The rheumy told him I was to drop 1mg per month. No mention of getting to the point where the pain returns and stopping the reduction. Just left me with the impression that I was to drop 1mg per month until I wasn't taking any! So thankful I found this site and now understand better how it works. x

piglette profile image
piglette in reply to Omanain

Fair enough. Do you think it makes any difference not having a repeat prescription to having one? Do you think you get more pred without a repeat prescription?

Omanain profile image
Omanain in reply to piglette

If he puts the pred on repeat I can just order them each month. If he doesn't I would have to make an appointment to see him each month.

piglette profile image
piglette in reply to Omanain

I suppose it actually is in his interest to put them on repeat prescription. I assume the problem is you might have too little if he does that. Could you have it on repeat prescription and phone him up if you needed more because of problems?

Piglette always has the best ideas xxx

Omanain profile image
Omanain in reply to piglette

My worry is that the rheumatologist will not agree to this method of reduction. He will contact my GP and advise him on how much to prescribe. My next appointment with the rheumatologist is in November so I won't know until then whether or not I have a 'fight'on my hands. x

piglette profile image
piglette in reply to Omanain

Do you think your rheumatologist will contact your GP? In four years I don’t think my GP has ever contacted my rheumie or vice versa and when I visit the rheumie she writes a letter which I don’t think my GP reads. Mind you it is usually pretty banal.

Omanain profile image
Omanain in reply to piglette

The last time I saw my GP he gave me a copy of the letter the rheumatologist had sent him and he had put a prescription for omeprazole and AA into the system as advised by the rheumy, so suppose he must read some of it!

PMRpro profile image
PMRproAmbassador in reply to Omanain

It might be a first if he suggests/the GP takes any notice! I've always said what my dose is, erring on the higher side, and emphasising the need for various doses to be able to reduce.

PMRpro profile image
PMRproAmbassador in reply to piglette

It is also far cheaper for the NHS if the repeat scripts are for 2 or 3 months worth - every script costs the NHS about a £1 (or more) for the dispensing fee. And how many I had was up to the GP - she just wrote the script for 100x 5mg and 200 x 1mg (say but it was actually more) to give a good selection to create doses.

piglette profile image
piglette in reply to PMRpro

I think that used to be the case for me but they now seem to have changed the system so I get one month’s supply maximum. I have even had the situation of less than a couple of weeks supply with repeat prescription which is really annoying. It was for 16 tablets so the pharmacist had to chop up packets of pills for it. Maybe the idea of cutting down on pills, probably based on some directive by the dept of health. They have been telling people to take honey for colds rather than visiting the doctor and not asking for antibiotics which are useless anyway, perhaps they ask for other things too. They are stopping prescribing a lot of things now and getting people to buy them OTC, some of which I sort of agree with like dandruff shampoo. They are also not doing several ops anymore such as carpal tunnel. Reading the BMJ today it looks like they are starting to hand over to the private sector by fair means or foul. The new minister of health seems to have grand plans.

PMRpro profile image
PMRproAmbassador in reply to piglette

Yee-eesss.

I fully appreciate the concept of small amounts being dispensed - but they have to take chronic illness into account. I was just going to say probably worth an audience with a doctor to sort it but on second thoughts, knowing your GPs' history, maybe not...

piglette profile image
piglette in reply to PMRpro

I have just given up, I am now on my sixth GP, although it seems we do not have a particular GP any more anyway. I have noticed that of the three hospitals I visit I have a different GP against my name at each, so presumably three databases plus the GPs’ own one. The new health minister is offering several million pounds for a new computer system, considering the last one cost twelve billion pounds which was then written off I do not hold out much hope, although a good idea. All the nurses have now left my surgery except for one. We had a new one last May who lasted a couple of months and left complaining it was too much like hard work!

GerriMc profile image
GerriMc in reply to Omanain

I only see my Rheumy every six months now. So I have a six month prescription.

I think regardless of what medication you’re on here(Ireland), it only lasts 6 months.

Daisychain12 profile image
Daisychain12 in reply to Omanain

Oh dear it’s really upsetting. I wish I could help. Please keep us updated. We all care xxx

Daisychain12 profile image
Daisychain12 in reply to Omanain

Yes! It’s a bloody mine field isn’t it. #shakingheadinconfusion

Koalajane profile image
Koalajane in reply to Omanain

I am lucky, my doctor put mine on repeat and my repeat is for 9 mg. I am now on 6.5 going to 6 and so just order when required. The 5 mg tablets are separate to the 1 mg so can order as required.

Dewdrop456 profile image
Dewdrop456 in reply to Koalajane

Me too .I just fill in the form at the pharmacy .I order 5mgs,2.5mgs and 1mg.I just say I need to have the various doses for reduction combinations. I never have to worry. My GP is happy to let me manage my tapering myself. I even order my own blood test when I think I need one.

I'm sure it's a good way, as I feel in control and not pressured. I see her if I need to for advice.

Omanain profile image
Omanain in reply to Dewdrop456

I saw my GP yesterday and he wants to use a similar system to yours. I am so relieved! I told him I was worried about the rheumatologist and he said rheumatologists often want to rush people of pred but that is not his way!

Dewdrop456 profile image
Dewdrop456 in reply to Omanain

This whole PMR thing is a huge constantly changing individual learning curve for all of us .Its all trial and error for each of us at any given time with our own bodies and taking into account the variables of the PMR and dosages of the Prednisolone outside stress etc .Thats why ,I think,we all celebrate with each other when one of us actually feels that they have got it under control and they feel better in some way which can be an amazing victory!

Good luck with your experience . I really don't know how I would have got on without all the thoughtful kindness and advice from the group here.

Dewdrop456 profile image
Dewdrop456 in reply to Omanain

I'm glad you will have an input into your management .I think my Doctor would like to reduce me too quickly but I have learnt from here that it's not a race and it's given me the confidence to make my own decisions using my new found knowledge . If I see her I just say how many mgs I'm taking .

The only thing is ,I'm so worried about not taking enough to dampen down a flare and the damage that could cause ,that I may have changed my attitude completely. I used to put up with various pains now I will 'up my dose' if necessary . That's when. a blood test result helps.And of course all the tapering advice on here!

Omanain profile image
Omanain in reply to Dewdrop456

That is what happened to me. When we are first diagnosed we know nothing about it, I had never even heard of PMR, so we just have to take everything they tell us as fact. I am just so glad I found this site so soon after my diagnosis so was able to present my doctor with a clear, fact based statement. I quoted PMRpro and told him this was based on proper scientific studies, not Dr Google, and I actually think he was quite impressed!

Have you tried using one of the slow reduction methods recommended by PMRpro and others on this site? They are very slow and steady enabling you to quickly go back to the previous dose if you experience pain. This way you should be able to avoid flares and pred withdrawals.

All the best

Kate

Dewdrop456 profile image
Dewdrop456 in reply to Omanain

Well yes I do do slow reductions but as I said in a previous post ,this summer has been particularly stressful. I'm back on 9 mgs and will wait for a few weeks before tapering.best of luck.

Hi Paddy. Great attitude which I shall try to emulate! Xx

I really had no idea that the lower my dose got the harder it would be. I try not to compare myself with others but admit that at times I do. We all want to be well again 🌸

Bunny that’s it in a nutshell. We all want to get better. Xxx

I totally agree Omanain. On the other hand I know I feel really pleased when I am able to reduce with no problems and really depressed if I have to increase for any reason, one feels happy for others when reduction is going well.

Omanain profile image
Omanain in reply to piglette

Dear All (who responded to my post)

There seems to be no button for a 'reply to all' so I am sending this to piglette who replied last!!

With all illnesses there is cause to celebrate when we get better. PMR is no different and getting to low doses, without flares or withdrawals is bound to make us happy and pleased for ourselves and each other.

It’s just that sometimes it sounded as if we rather than the PMR were in control and we had a choice as to how much pred we took.

Maybe ‘wonderful’ or ‘great’ or ‘so pleased for you’ or some such would be more appropriate than ‘well done.’? Getting to lower doses and ultimately coming off pred is our ultimate goal, even if the thought is sometimes quite frightening, and it deserves to be marked.

The support and encouragement from this forum is invaluable and I am so glad I found it so soon after my diagnosis.

PMRpro profile image
PMRproAmbassador in reply to Omanain

Reply all is really taken by replying to the poster...

It's all crazy once there are more than about 2 responses to a comment! This forum set-up wasn't designed for PMRGCA-ers...

Omanain profile image
Omanain in reply to PMRpro

Do you mean I would reply to myself?

PMRpro profile image
PMRproAmbassador in reply to Omanain

Yes - and then everyone following the thread would get a notification.

Omanain profile image
Omanain in reply to PMRpro

OK thanks. I will remember that next time.

Daisychain12 profile image
Daisychain12 in reply to Omanain

I had no idea either x

Hidden profile image
Hidden in reply to Omanain

It is great when someone achieves a small drop even if only 0.5mg especially if they can maintain it!

I’ve ‘achieved’ 5mg for a good long period aided & abetted by Chemo & Methotrexate, but they’ve stopped my Methotrexate as my liver enzymes have accelerated & lm now back up at 10mg from 7.5mg so it’s very much swings & roundabouts!

Sometimes dropping 0.5mg can feel like Winning The Lottery, it all depends on how each of us feel at the time.

A Post last weekend kicked off a whole barrage of bad feeling because someone suggested people were dwelling on their illnesses rather than living their lives!.......

It’s a tough old road this PMR & l’ll be getting my Seven Year Badge next month, l’ve had TNBC Breast Cancer slap bang in the middle of this but onward & upward we all go!

Any reduction that anyone can maintain is to be applauded, it’s another small step in hopefully the road to our recovery! It’s nothing to do with Will Power or Stiff Upper Lip it’s in the lap of the gods!

I’m sitting in the Business Lounge at Heathrow on my 2nd glass of wine 🍷 which no doubt I will have to give up very soon, after my next lot of bloods but for now Cheers 🍷🥂🍷

Mrs N

Heading to France for R&R 😘

PS My lovely, dear departed Consultant said that for some of us, a 5mg maintenance dose may be necessary for the rest of our lives. RIP Dr Lim 🌺

Omanain profile image
Omanain in reply to Hidden

I suppose a 5mg maintenance dose for life wouldn't be such a big deal for older ones like me - but not a nice prospect for the younger ones. But what would the alternative be?

You have had a rough time so enjoy your wine while you can!!

Have a lovely holiday x

Hidden profile image
Hidden in reply to Omanain

5mg isn’t so bad in the scheme of things but l’d love to think l could get to Zero but compared to Chemo & it’s side effects, hey! Cheers 🥂

Daisychain12 profile image
Daisychain12 in reply to Hidden

Oooh how I wish I was there with you Angela!!!! I agree with you and I just dropped to 15 from 16 today and I’m terrified. Have the best time darling xxxx

After several attempts, I've just dropped from 3.5mg to 3mg but I'm not telling anybody. Onwards and upwards - or downwards. Good luck Daisychain12 and everybody else on the downward slope. As it were ........

Omanain profile image
Omanain in reply to piglette

And so you should be pleased!! I haven't had to do that yet but it must be depressing to have to increase again, especially if the increased weight is a problem. I have already started with hamster cheeks and my trousers are getting a touch tight. Goodness knows what I'll be like in 5 years!!

Just don't blame yourself instead of the illness. It's not your fault!!

x

I find this forum so helpful and informative,nobody likes to have to take steroids,but it is an achievement when we can lower our dose,we are all doing our best and it is not always easy ,but it does help to have advice from others from these posts.

I think that semantics is at the root of these misinterpreted posts 🤭

I reduced in textbook fashion from 15 to 3 in my first year, and no one ever congratulated me. In fact I was even slightly scolded for being too fast, although I really wasn't. Or even remarks made that made me feel others were resentful towards me. I was "lucky". So where is this cheering crowd? I want them!

GOOD_GRIEF profile image
GOOD_GRIEF in reply to HeronNS

Cheers to you from across the pond!

Omanain profile image
Omanain in reply to HeronNS

Heron that is awful. I would like to say now that it is wonderful news that you are so much better that you can manage on 3mg pred. That is surely our aim - to be well again. (no matter what our current dose) Hope you are keeping well now.

Kate x

We are told that the lower the dose of prednisone, and the shorter time on it, the better with less chance of side effects. This may impact some of the responses.

Omanain profile image
Omanain in reply to PMRCanada

I think you are right, but I would like to encourage people tor educe at a rate that makes flares and pred withdrawal less likely. It may take a little longer but ultimately we will probably need less pred. I also don't like pred being treated as the enemy!! It is the wonderful stuff that keeps me out of pain!! What would we do without it?

PMRCanada profile image
PMRCanada in reply to Omanain

Agreed.

I also find that some folks, including myself, compare themselves to where other people are at. For instance....you and I were both diagnosed this past May and you are currently at 9mg. I am at 11mg (after following my rheummys suggested taper), so had to back up to go back up to 15 for 5 weeks delaying my taper. Tapering slower this time to avoid another flare.

Comparing ourselves with others, in any circumstance, doesn’t usually generate good feelings about oneself....somehow we usually determine we are coming up short (even though we don’t have all the facts and history of the person we are comparing ourselves to). On forums such as this we often seek and celebrate common ground, it helps us feel less isolated. Lets not forget the unique nature of these common conditions on us as individuals. My body may respond to pred more favourably than yours. You may have additional or underlying conditions that I do not. You may have a wonderful support system in place, or your physicians may have a different approach than my doctors.

I think we are happy to hear similar stories on here because it makes us feel “normal” and we “get” one another better than non-PMR/GCA people.

Omanain profile image
Omanain in reply to PMRCanada

This was really the point of my original post. Getting off pred often seems to be the main focus when of course getting better is the main point. It's not the pred that is the enemy but the PMR.

The following is what I said to my GP yesterday. The first time I've seen him since I started tapering and I was worried about his approach-

" As I understand it prednisolone is prescribed at the necessary dose to get the pain under control. Once the pain is under control the prednisolone is gradually tapered until it gets to a point where pain returns. This means the PMR hasn’t yet gone into remission so I should return to the previous dose for a couple of weeks before trying again. If this happens a second time stay on the previous dose for a couple of months before trying again. This could take some time as the average time PMR lasts is 6 years."

He actually said this was the best way and rheumatologists often rushed people off to fast which led to flares and pred withdrawal.

I am going to use one of the dead slow methods advised by PMRpro and others.

Have you looked at these?

Wishing you all the best in dealing with YOUR PMR.

Katex

PMRCanada profile image
PMRCanada in reply to Omanain

Yes Kate, I've read about a number of tapering methods on here. Created my own based on these, which is a bit of a hybrid, and driven by my ongoing current symptoms.

I need to have the same talk with my rheumy....again. Let's hope it sticks this time (or it's time to move on). My gp is great, very understanding, patient, quite knowledgeable, and even has a sense of humour. He even prescribed 1mg pred tablets to me so I could taper slower (and not have to used a pill cutter) as my rheumy had only prescribed 5mg tablets to follow HER taper. My gp told me to not even mention it to her and continue doing my own thing. He will give me a referral to a new rheumy if I decide I don't want to see her again after my next appointment.

I am doing my best to focus on my journey, while still learning from the journeys of others. I've never have been much of a competitor, so I don't see myself in a race to get to 0 pred. Indeed, I'm much more of a "group" person, where everyone participates together. I will continue to ask for advice, for help, for empathy, for understanding and make decisions based on what I believe is best for my health. In return I will continue to listen, share, support those in this forum as we all heal.

Omanain profile image
Omanain in reply to PMRCanada

You seem to have covered all the bases for the moment. We are so fortunate to have this forum to turn to. All the best and keep in touch. Kate x

I think the cheering is nice. For me, I am cheering because, the person that has been able to reduce must feel much better. I cheer for the better health that person is experiencing. When I finally feel better , enough to reduce the pred, I hope everyone cheers for me.

Omanain profile image
Omanain in reply to Linny3

Hi Linny, it isn't the cheering as such I was objecting to, it just that sometimes it seemed that it was a race as to who could reduce pred the fastest. After all, get well cards don't useually have 'Well Done' in them do they? So 'hooray' for everyone who has reduced this month and is still feeling well. It is lovely to know you are on the road to recovery. It also helps me to see the light at the end of my tunnel.

Kate x

Daisychain12 profile image
Daisychain12 in reply to Linny3

Lin I will xxx

I have seen my rheumatologist twice - once to be diagnosed and another check up appointment during which he said he would see me once more and if my tapering was going well he would discharge me back to my GP.

My GP did say that here in Northern Ireland the usual waiting time to see a Rheumatologist is 2.5 years, he referred me as 'urgent' and I was seen in 2 months.

Omanain profile image
Omanain in reply to Theziggy

Best find out you GP's views on tapering. If you just have PMR i don't think you really need a rheumatologist. Just a GP with an up to date, sensible approach to tapering.

Good luck!

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