tapering progress : I have just completed 2 months... - PMRGCAuk

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tapering progress

Alazarin profile image
43 Replies

I have just completed 2 months on 4mg. My consultation with GP, has surprised me, this is his plan: After a significant flare…..

Advice…the lower you go, the slower you go. So….

Go to 3mg, for 4 months. It may take a year or so to come off completely, as we go verrry slow on the lower doses.

How very different from my Rheumy, who’s mantra was reduce one mg per month, at all costs, get off as quick as possible.

I’ll keep you posted.

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Alazarin profile image
Alazarin
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43 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hang on to GP -sounds very sensible…😊,

Koalajane profile image
Koalajane

That sounds good, I actually drop by .5mg now and sometimes by .25mg

piglette profile image
piglette

I just LOVE that strap line the lower you go, the slower you go. Are you sure you were talking to a doctor?

SnazzyD profile image
SnazzyD

I might be wrong but sounds like one is based on a plan on paper and not current thinking and one is based on the patient and reality?

Alazarin profile image
Alazarin

I think he does his homework, bless him. He was the one who first diagnosed my PMR, and admitted to me then, he didn’t know a lot about it.

Dochaz profile image
Dochaz

My Dr (a hospital internist) has just given me the plan for the next 6 months: reducing by half a mg every 2 months, but longer if I need it. He was against introducing a steroid sparer at this low dose (4 mg) as I have no side effects from Pred, and I don't want to have to deal with any other drugs. I have previously tried going a little faster but hit the wall each time I got below 3mg with a return of PMR symptoms, though not GCA. I don't really know how to recognise LVV symptoms, but maybe a feeling of extreme fatigue could be a sign?

So the lower the slower sounds good to me. And we know that the advice given here is the same... Thanks again for the support 🙏

Oxfordboy2 profile image
Oxfordboy2 in reply toDochaz

I don’t know if this will be of help but I have LVV and last week I had a phone consultation with rheumatologist and I asked him what symptoms a flare would present.His answer was a high temperature and feeling very unwell that doesn’t go away.If it persists then contact GP.

Dochaz profile image
Dochaz in reply toOxfordboy2

Thank you for that information. I do get very fatigued when my PMR symptoms niggle but I never had a high temperature even just before diagnosis. I rely on monthly blood tests to monitor things because I know that fatigue can also be adrenals struggling. So much useful information here! Where would we be without this group 🙏

Oxfordboy2 profile image
Oxfordboy2 in reply toDochaz

I did gleen one other piece of information from the Doctor you may be interested in.I have also kept a close eye on my blood test results and did ask during my consultation that as they had been consistently good could this be the basis to reduce my dose of Methotrexate.No was the answer,we use these to make sure the Methotrexate isn’t harming you.

PMRCanada profile image
PMRCanada in reply toOxfordboy2

Your reply posts are of interest to me.

I’ve been experiencing a low grade fever, and generally feeling unwell with occasional sore throat and slight upper respiratory symptoms the last few days as I settle in to 5.5mgs pred. Had these symptoms for 4 months last winter. I also have noted pain on either side of base of neck and scalp in places. Lastly I’ve had a intermittent fluttering or pounding sensation with my heart so I’ll be discussing these symptoms and LVV symptoms/diagnosis at my next rheumy appt.

I too am on MTX for 2 years (less months I did not take it due to infections, diverticulitis, etc including last winter). Last March I discussed lowering my MTX dose because I was so ill all winter and agreed to lower it from 25mg to 15mg injection weekly. I’m feeling much better this winter until the last few days. I still get monthly bloodwork for monitoring purposes as I’m on both pred and MTX.

I see from your bio a pet scan of your heart revealed LVV….hope it is well managed.

Oxfordboy2 profile image
Oxfordboy2 in reply toPMRCanada

Hi Canada,I started at 20mg Methotrexate and like you felt nauseous all the time but decided to try and ride it out then around 8 months ago after telling the rheumatologist how I felt he said I could try reducing to 15mg.I am on tablets not injections.I also had hair thinning and loss,ulcers and sore gums.Just by chance around 4 months ago I took my methotrexate late morning instead of directly after breakfast and the results were amazing.No more nausea and I think my hair is growing back.Still have sore gums but not as often other than that I feel fine no aches or pains or mobility issues.I did ask last week if I could reduce again,I am a believer that I only want to take as little as possible to control my condition.This has led to my second PET scan next week and if my inflamed aorta has improved he will look at reducing my MTX.This is the only med I take other than folic acid.Others on here have remarked they know of know one on only 1 med for this condition.I do take a 2 week holiday after flu and COVID jabs with no problems.

PMRCanada profile image
PMRCanada in reply toOxfordboy2

Thanks for the background details of your MTX journey. Glad to hear you have managed to lessen some of the nasty side effects of MTX.

I’ve never had any nausea, mouth sores, or ulcers on MTX, thank goodness. I was told by my rheumy that injections have less side effects than tablets so I’ve stayed with shots weekly taken at bedtime. No problems. I also take 5mg of folic acid every day except my injection day which I’ve been told helps keep side effects at bay. My hair did thin a bit, but I take biotin and it seems to help.

It’s the other symptoms (low grade fever, sore throat, slight wheezing, scalp sensitivity and heart palpitations) that I need to enquire about at my next rheumy appt. I think this feeling of mild flu may be connected to my prednisone tapering….but not sure. Hoping it’s not another condition lurking in the background (like LVV), so best to get it checked out.

All the best with your PET scan next week. Hope the results allow you adjust your MTX with your rheumy’s blessing.

Alazarin profile image
Alazarin

perhaps word is finally getting out

PMRpro profile image
PMRproAmbassador

A keeper that GP!

Sherlock57 profile image
Sherlock57

Perhaps your GP has been reading this forum!

Predderman2020 profile image
Predderman2020

Thanks - sounds ideal - I am about to have another slow-go! Would you outline roughly how you got to 4 mgs, timing wise. Just been through a major stress period, but 🤞 things may be different now for the coming year. Thanks.

Sweetpeasoprano profile image
Sweetpeasoprano

Sounds like a great GP. My GP told me that she was happy to let me work out my own tapering plan after I told her my plan was to reduce by 10% per month-ish. (Inspired by the plans on this forum) Every time I reduced I did a week of alternate days (old dose/new dose) then about 4 weeks on the new dose. 10% was tricky on lower doses but I’m a mathematician so I did some rounding and also chopped up 1mg into 0.25 when necessary. It’s taken just over two years but I’m just about there now and take 0.25 mg on alternate days, which is probably having no effect at all and is a security blanket!

Alazarin profile image
Alazarin in reply toSweetpeasoprano

Well done you. It’s so individual.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSweetpeasoprano

….. 0.25 mg on alternate days, which is probably having no effect at all and is a security blanket!

You’d be surprised how much it might be doing…. 😊

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Absolutely!!!!!

Sweetpeasoprano profile image
Sweetpeasoprano in reply toDorsetLady

Thanks. That’s good to know and has stopped me feeling silly for clinging on. This forum has helped me so much, especially at the beginning of my journey. 💚

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSweetpeasoprano

No need to feel silly, I think with my GCA I probably could have come off Pred slightly quicker - did 7 week taper from 1mg to 0.5mg - and then another 7 weeks from 0.5mg to zero [after a false start].

Like you was a bit hesitant, so did it the slow way - and it worked out fine. So go with your gut feeling.

LemonZest11 profile image
LemonZest11 in reply toSweetpeasoprano

I was on .25mg for ages. It made all the difference because I flared the first time I dropped it.

Sweetpeasoprano profile image
Sweetpeasoprano in reply toLemonZest11

In that case I’ll be cautious. I’ll maybe go from every other day to a gap of two days for a while.

Alazarin profile image
Alazarin

that’s a long story Predderman. Started on 20 in 2018, went to 40 with GCA. Eventually came off completely in 2022. Experienced a flare affecting a different part of my body, 8mg fixed that in May 2023, been tapering since then, sometimes using alternate days over a couple of weeks before dropping to lower dose, sometimes half mg over weeks, this last step Dr suggested I stay on 4mg for 2 months his thinking was to enable my body to adjust, this has worked for me, and I’ve felt well. Fingers crossed for taper to 3.

Pixix profile image
Pixix

Snap! My GP keeping me on 2mg for a long while,, while other medical things settle. The rheumy I saw said get off them immediately, 1mg per month, doesn’t matter if you feel I’ll, just fight through it. Guess you know which advice I’m taking!

PMRpro profile image
PMRproAmbassador in reply toPixix

Does the rheumy enjoy putting people at risk of an adrenal crisis by telling them to ignore feeling ill?

Alazarin profile image
Alazarin in reply toPMRpro

I know, Pro, what is going on there.?. I can honestly say looking back, I never felt well, under the Rheumy, worse when I came off.

Pixix profile image
Pixix in reply toPMRpro

“quite possible she may be Addisonian”…quote from letter to GP. I was not copied (received my own copy of neurologists letter in post yesterday)…good job I knew about adrenal crisis possibility, I think. Anyways I followed a different path…! S x

Louiseiw profile image
Louiseiw

My Rheumy told me that he will keep me on 5/6 mg pred long term. I do also auto inject Methotrexate 15mg and he content for me to continue as I am.

Gimme profile image
Gimme

I've been dropping in 0.5 mg each time, since I got to 5mg.

Pondweed profile image
Pondweed in reply toGimme

Me too. DL's dead slow over 14 weeks has served me well. After being diagnosed in May 2021, I am now at 4.5mg reducing to 4mg over the next 14 weeks. This wonderful forum has been a loyal best friend every single day over the past two and a half years....thank you ❤️ Love from Pondweed

Gimme profile image
Gimme

This conversation made me check the NICE guidelines and I believe that this is what the rheumatologist is probably following, though I have seen very similar quoted elsewhere. I'm not saying that this is wrong or right, just remarking that I would say that this is why we hear this advice so often and to give the source.

Just for ref, this is the link. cks.nice.org.uk/topics/poly...

The GP's version sounded more compassionate, and that did make me ask the question to myself, I wonder if the advice given by doctor's depends on how much direct contact they have with patients with PMR, and whether they modify that advice based on past experiences.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGimme

, I wonder if the advice given by doctor's depends on how much direct contact they have with patients with PMR, and whether they modify that advice based on past experiences.

More than likely, certainly on contact with patient, which is why we often say a good GP wins over a not-so-good rheumy everyday. And we would hope that any doctor would modify advice on past experience, but unfortunately many don't seem to..

Gimme profile image
Gimme in reply toDorsetLady

It's probably the down side of not standing your ground, so they don't get the feed back (if they are even listening). I know I have been guilty of that in the past, but the last thing you want when you are unwell is to have to battle with a doctor who is not listening or feel bullied by. Then I end up going to see someone else instead. Sadly, self perpetuating.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toGimme

Yes very true - as you say the last thing you need is an unsympathetic doctor ...

PMRpro profile image
PMRproAmbassador in reply toGimme

However - according to Prof Sarah Mackie the NICE things are NOT guidelines. They are supposed to be advice and are written by a third party company of medical writers who read the medical literature and then produce a composite. And as such, are written by people who have neither a medical qualification or experience of real patients.

And as you say - these things are believed by the doctors who think the patients they experimented on were OK, not realising that actually, they voted with their feet.

AshPen9 profile image
AshPen9

I've just had a flare caused by going too low. Rheumy has told me not to try again for a year! Even then he said make sure you go slowly. I also take Hydroxychloroquine, which I have to reduce from 300mg to 200mg in 6 months time.

Stargiver profile image
Stargiver

What a nice GP. I visited mine yesterday after requesting a bone scan, which a number of people on this forum seem to have had. He told me that it would be pointless as steroids thin the bones so I definitely have a degree of osteoporosis. I could only have one when I was off the steroids and the sooner the better. Of course I want to be off Pred but I do not want to have the awful pain of PMR. His view was 1) reduce as quickly as possible, 2) my current dose of 7mg was a high one, and 3) if I did get pain it was as likely to be arthritis because of my age (74) as PMR, so get on with it

I sort of agree of course that taking Pred can be damaging - for one thing my high BP . Not all the GP's in my practice are as blunt as he is, and I should be seeing a hospital Rheumy in the next few weeks again - I think I am on this path at the hospital as there was a threat of GCA in the early days, which came to nothing.

So if you get a sympathetic GP you are lucky.

PMRpro profile image
PMRproAmbassador in reply toStargiver

"He told me that it would be pointless as steroids thin the bones so I definitely have a degree of osteoporosis"

Which is utter rubbish. We probably all are osteopeneic - but that is an entirely different thing. I was osteopeneic when I went on pred with t-scores of about -1.3. After a good 11 years on pred, most of them at above 10mg'day, my t-scores were IRO -1.6, still mid-range osteopeneic. I know several others who were either on high doses for GCA or several years for PMR who also maintained bone density. You cannot know it is pred that caused someone's low bone density unless they had a baseline dexascan at the start.

With that set off mistruths, he wouldn't be my doctor for long!!!

ithurts1 profile image
ithurts1

I am on 6 1/2mg currently and plan for it to take me just over a year to get down…. As long as all goes well! Fingers crossed . no flares yet since the early days last April

LemonZest11 profile image
LemonZest11

Hi Alazarin, well done! I'd drop by half a mg, or even .25mg from now on. 1mg is quite a drop at your low dose. All the best!

Alazarin profile image
Alazarin

yes, I am a bit nervous about the 25% drop all at once tbh. I don’t flare necessarily but seem to get migraines. I’ll follow docs advice, then if it doesn’t work, I’ll do my dead slow number.

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