Tapering help !!

[tiggersue]

Hello all. I was put on 60mg of Prednisolone in July because of suspected GCA and PMR. GP reduced it to 30mg in one go but a week later I saw the Rheumatologist who said that was too big a drop and put me back up to 40mg. Since then I have dropped to 7.5 mg but I am getting symptoms back and feel dreadful. My recent blood test (last week) showed my ESR had risen to 46 from it being 27 in August and CRP had stayed at 16. Surely my ESR shouldn’t be going up?? I feel so unwell and wondered if others feel poorly as you are tapering? Are there withdrawal symptoms?? Many thanks and stay well and safe.

[jinasc]

Take the time to read this:

healthunlocked.com/pmrgcauk...

It will help you understand better both GCA &PMR.

You have tapered far too fast from 40mg to 7.5mg. I suggest you look at the tapering plans in the FAQ's section. Also in the FAQ section look at the video, You Are Not Alone and this will also help you to get a handle on both.

Your ESR and CRP are just indicators that something it wrong - the fact it has gone up is indicating that you are not yet in control and need more pred.

I would suggest you increase to at least 10mg and see if that alleviates the symptoms. If not you will probably need to go to 20mg and see what happens if the symptoms reduce, than wait a couple of weeks and reduce by no more than 10% at a time using one of the plans.

With PMR and GCA you are for the long haul, there is no known cause or cure and the pred it to enable you to live as pain free as possible.

I would also be contacting my Rheumatologist - a phone call?

Others will be along soon and will also help.

[tiggersue in reply to jinasc]

Thank you so much , I will have a read !! The Rheumatologist had me dropping by 10mg every 2 weeks until I got to 20mg then drop by 2.5 every 2 weeks. Once I got to 15mg I started to feel worse and it’s just got worse each drop. I think I will do as you suggest and ring the Rheumatologist, she said in July she wanted to see me in 3 months but as yet no appointment. Thank you 😊 .

[Nextoneplease]

Hi tiggersue 😊

I see you’ve been around these parts for a while - pleased to meet you.

I expect you’ve come across the FAQs section on here - full of useful facts and advice. I often go back to the post on ‘Flare or Withdrawal’

healthunlocked.com/pmrgcauk...

It does sound as though you are reducing too fast for you (everyone’s different) and you shouldn’t be in such pain or discomfort. And I wouldn’t expect your ESR to go up…although that’s not specific to GCA or PMR and the rise could be caused by something else.

My feeling is that you need to review your tapering plan. When did you last feel okay? Can you go back up to that dose for a couple of weeks then start tapering down again?

I’m sure others will be along soon with more advice.

All the best

Nextoneplease x

[tiggersue in reply to Nextoneplease]

Thank you for your advice. Yes, I was here roughly 9 years ago 😞 when they suspected PMR but this time around the response to the high dose of steroids left little doubt that I have both PMR and GCA. I am going to contact the Rheumatologist as after all the helpful advice on here I think I need to slow down !!

[SnazzyD]

Hello, I fear you’ve been reduced far too quickly and the autoimmune activity is over-running the Pred’s ability to deal with the inflammation. At 4 months in I was on 20mg not 7.5mg. Pred is not a cure as it is just used to stop damaging inflammation caused by your immune system attacking itself. Therefore, if your activity is still high, as evidenced by your blood results, no plan on paper is going to work if you’re not being given the right dose for you. You need to contact your doc for a review as soon as possible.

[tiggersue in reply to SnazzyD]

Thank you 😊 , I was so upset when my recent blood test showed such a rise in my ESR but the GP marked it as satisfactory and no further action required (still not able to see GP face to face) !! Rheumatologist it is on Monday morning.

[SnazzyD in reply to tiggersue]

Satisfactory? Well, even if they think it isn’t the GCA or it’s ok, it’s still a rise and therefore a repeat blood needs doing to see if the increase is a trend further upwards or a one off, that is standard practice.

[tiggersue in reply to SnazzyD]

Thank you for replying, I think the Rheumatologist will have a different opinion on the ESR rising then the GP !!

[PMRpro Ambassador]

You are NEVER reducing relelntlessly to zero - you are titrating the dose to find the lowest effective dose at any given time - the lowest dose that gives the same relief of symptoms as the starting dose did.

The SPEED at which you reduce isn't the crucial point - it is not overshooting and going to too low a dose to manage the daily new dollop of inflammation created by the autoimmune part of the disease. That is what has happened to you,

How many times have you had the markers checked since August? What were the numbers then and what dose were you at? Have you had them checked in the meantime - and what were they? You should have reduced a bit more slowly probably, remaining at each dose for at least 3 weeks to be sure it was still enough and the markers should have been checked before each next reduction. If the markers start to rise you stop reducing and check them a week or two later - if they are still rising, you go back to a higher dose that keeps them steady. Is this reduction being managed by your GP? If so they are being too gung-ho about it and they need to calm down and monitor what is going on better.

[tiggersue in reply to PMRpro]

Thank you for replying. My GP was managing it but then I saw the Rheumatologist and she took over. I have only had two bloods test since being diagnosed in July, August was not actually for the markers specifically and this recent one was. You are so right about the monitoring, everyone else I see on groups are monitored much more closely.

[PMRpro Ambassador in reply to tiggersue]

It's fine the rheumy decding they want to be in charge - but there MUST be a means of keeping an eye on the inflammation levels. The pred cures nothing - it manages the inflammation and keeps it at a level that doesn't cause trouble. It is like a tap dripping into a bucket - as long as you scoop out more from the bucket than the tap is delivering it won't overflow. Using a coffee cup to remove water when the tap is dripping in a beer mug full will result in an overflow! You haven't cured the cause of the inflammation with the high dose pred - you are looking for the lowest dose that works to use long term. So you need to know if you have gone too far in the other direction and are allowing inflammation to build up.

[tiggersue in reply to PMRpro]

Thank you for replying, what a great way of thinking about the inflammation. The Rheumatologist said in July she wanted to see me in 3 months but so far I haven’t had an appointment although I appreciate how difficult things are for them all through this horrid pandemic and so many things backlogged. I am going to ring them Monday.

[piglette]

I have discovered that you should never reduce until you feel OK as good as you did when you first started pred. Basically it pretty well always leads to disaster, you feel rotten and life is just not worth living. Just take it slowly and things in the end will be just as fast.

[Nextoneplease in reply to piglette]

What a good way of putting it piglette 😊

[tiggersue in reply to piglette]

You are so right and thank you for replying. I have to say I do feel rotten 😔. When I was on the higher dose of steroids I felt awful but from them and the PMR and GCA was so much better. Now I am in a lot of pain again, heavier and have the moon face which is all very depressing.

[piglette in reply to tiggersue]

It does sound as if PMR is fighting back at the moment. You need to knock it on the head.

[Broseley in reply to piglette]

Hi Piglette this is interesting to me too because I reduced from 40mg for GCA and PMR) to 30mg and I'm due to reduce to 25mg next week, after a month on 30mg. However I've started this week to get some mild aches and pains. No stiffness though, or headache. Also a sore throat (which I did have with the GCA) and jaw ache on chewing. Do you think I should wait longer before reducing? I certainly don't feel as good as I did when I first started pred, and that was 15mg. It was only put up to 40mg when the headache didn't quite go, but all the other symptoms did.

[piglette in reply to Broseley]

Of course you may be getting a cold or bug, but basically don’t think of reducing at the moment. I am afraid the moon face will probably not go away until you are on a very low dose.

[Broseley in reply to piglette]

I haven't got a moon face, yet, neither have I put any weight on! Maybe you think you're replying to Tiggersue?

[piglette in reply to Broseley]

Yes you are right! I was told eating gluten free and cutting down on simple carbs stopped a moon face. It worked for me, could just have been luck on the other hand!

[Broseley in reply to piglette]

I have been pigging out on biscuits in the evenings since going on steroids, an almost insatiable appetite! So maybe just luck, or it may still happen as I've only been on them since September.

[PMRpro Ambassador in reply to Broseley]

What is more of a concern than moonface is developing steroid-induced diabetes. Keep and eye on your Hba1c level as it creeping up is a warning to keep and eye on your diet and simple carbs especially

[tiggersue in reply to PMRpro]

Thank you, I will ask if it was checked on my last blood test.

[Broseley in reply to PMRpro]

For that I need regular blood tests. Can I request them? Last one, 2 weeks ago at rheumy appointment was fine, but I have to phone for the results, they don't put them on the letter!! Next rheumy appointment is meant to be in 3 months time though not come through yet.

[PMRpro Ambassador in reply to Broseley]

Every 3 months is fine - it reflects the previous 3 months BS levels so doesn't change rapidly. But if it starts to edge up, take note.

[Broseley in reply to PMRpro]

Will do! I take cinnamon tablets every day since being told I was pre diabetic 10 years ago. No change of diet, but it never developed, in fact Hba1c went back to normal.

[tiggersue in reply to Broseley]

I hope you manage to avoid it !! That on top of everything else is quite depressing 😔.

[piglette in reply to Broseley]

I could have eaten a five course meal when I started steroids followed by another five course meal!

[tiggersue in reply to piglette]

A friend of mine who is on steroids for something else said exactly the same !!

[tiggersue in reply to piglette]

I have coeliac disease so am off gluten and have been for years. I also have Hypothyroidism so getting hit by lots of autoimmune diseases. I just look at a donut and I put on a stone !!! I have tried to be more careful but it just seems to be a part of steroids.

[piglette in reply to tiggersue]

As my mother used to say “even air is fattening!”

[tiggersue in reply to piglette]

😂

[cycli in reply to piglette]

It really isn't piglette😀

[piglette in reply to cycli]

It is a good excuse though!!

[Broseley in reply to piglette]

Thanks for the advice Piglette.

[DorsetLady PMRGCAuk volunteer]

Hi tiggersue, Nextoneplease has kindly given you link to one of my posts, but this might help as well -

healthunlocked.com/pmrgcauk...

But as others have said, much too fast a reduction, no wonder you feel so rotten…..

[tiggersue in reply to DorsetLady]

Thank you for the link and thank you for replying . I will have a look at it.

[Viveka]

As others have said, too fast taper.

From my experience in too fast tapering, what happens in this is that not only do you get a build up of inflamation but also a world of withdrawal symptoms as your body becomes agitated with swift transition. It is hard to know what's what, but both are in play.

Your rheumy will no doubt give you a safer baseline from which to taper more slowly - as you may know from past experience of PMR there are expert guidelines on the PMRGCA website which cover tapering; everyone is different but if any doc suggested departing from these in a major way, I'd want to know the reasoning. It's usually more like 2.5 per month from 20.

As you'll probably know too, the rheumatology depts have a helpline service (that they don't advertise!) but if you contact them and say you are a GCA patient they seem to respond quite quickly.

Once you settle and reduce more slowly you should start to feel much better.

[tiggersue in reply to Viveka]

Thank you so much for replying. Some of the things you have mentioned I didn’t know so will get on to them. As you say I am not sure what is what……a flare or withdrawal but think I understand much better since all of you here have been so helpful.

[Jantayl]

Hi. My journey -may help. Diagnosed PMR Oct 2017 the GCA Feb 2018 - started at 60mg pred daily. Managed to reduce to 9mg pred in Sept 2018 - then ‘flare’ and increase in CRP. GP advised increase of pred to 15mg. That was then - now 3 years later I am down to 5mg - trying to reduce to 4.5mg but taking it slowly. This is such a roller coaster!

[tiggersue in reply to Jantayl]

Thank you for replying 😊. Yes….a rollercoaster. It was after I started the drops from when I had got to 15mg that everything started to creep back. I have a few health issues but nothing compares to PMR and GCA.

[Jantayl in reply to tiggersue]

To be fair I have other health issues which cause frequent infections - this has sometimes led to me increasing pred - I was at 4mg in April 2020! Apart from some tiredness - which may be an age thing - I have no pains and still walk daily 5/6 miles.