Consultant wants me to taper quicker

[Wraysbury]

My consultant suggested I try tapering by alternating from 10-9 mgs every other day for a month, then 9 mgs for a month then 9-8mgs etc. Prior to this I’ve done the DSNS from 15mgs and it was very successful. I’ve been doing his method for a wk have been unable to sleep at night and gradually getting more and more fatigue, (not tired, u all know the difference!) blurry eyes, dizzy and wretched. Today myBP was through the roof so I saw out of hours GP she thinks it’s all because of the tapering and I need to go back up to 10mgs and see my doctor and optician on Monday. My consultant will be disappointed as he stated I wd not have any problems with his method. Can tapering cause these symptoms please?? .

[SnazzyD]

Hello. Can I ask why, if your original method was successful, did your consultant want to change it? Was it too slow for their liking? I certainly would have felt it if I’d done the alternate day method. I know because at that level I just dropped a half mg every 2-3 weeks and could feel it next day. I once tried a 1mg one day - no thank you.

[Wraysbury in reply to SnazzyD]

Yes I’m too slow. I stayed on 15 mgs for 6 months cos when ever I tried reducing the symptoms crashed back. So I got referred to a Consultant. It’s taken me 9 months to get down to 10 mgs using DSNS. I think I also felt so confident that I thought I’d try and speed it up! It’s so very very frustrating. But I will return DSNS method and avoid the Consultant!

[Longtimer]

Your consultant may be disappointed but so are you...that`s far too quick, stick to what you have been doing. I had a consultant with fast lowering...put in a lot of pain etc….you now need to be lowering very slowly, the lower you get....good luck.

[Wraysbury in reply to Longtimer]

Thanks x

[jinasc]

Take this to your Consultant and see what he has to say:

Dr Sarah Mackie a leading Researcher into GCA & PMR has kindly allowed us to

inform you of progress being made . Dr Mackie emphasizes that you should always

talk to your own Doctor . We have also stressed this whenever the plans have been

sent to patients.

“We have been trying out the Dead Slow and Nearly Stop (DSNS) steroid reduction plan as

part of the FACT study protocol.

The FACT study is a very small pilot study, funded by Vasculitis UK and approved by a

research ethics committee; this study isn’t actually designed to test different steroid

reducing regimes, but is an exploration into causes of fatigue in people taking long-term

steroids.

We incorporated DSNS as an option on the basis that we know that DSNS, or something

like it, is already used by many patients in the community and because we didn’t

necessarily want to taper steroids over-fast in people who were experiencing fatigue. The

study is still ongoing.

So far it seems that some patients find that DSNS suits them well, especially those whose

symptoms tend to flare up when they step down their steroid dose.

However, DSNS will not suit everyone. DSNS is just one of various different approaches to

tapering the steroid dose, and it has to be stressed that there’s no one-size-fits-all to this –

you should always talk to your own doctor about what might be best for you.”

Dr Sarah Mackie, rheumatologist, Leeds.

[Wraysbury in reply to jinasc]

Thanks for this. I always take in some research for him! He is very receptive and did say at our last meeting that I appear to know more than he does!? Not that reassuring! However he was insistent that I reduce quicker. I should have stood by my guns!

[SuziCutie in reply to jinasc]

How can I save and print this please?

[Hidden in reply to SuziCutie]

Have pm you

[Wraysbury in reply to Hidden]

Is this to patrees?

[PMRpro Ambassador in reply to Wraysbury]

It does always say on the reply itself who the poster was replying to - in lighter print but still easy to read.

[Hidden in reply to Wraysbury]

Yes Wraysbury. Do you need a copy?

[DorsetLady PMRGCAuk volunteer]

I would say your body maybe doesn’t like the alternate days tapering, or 10mg is what you need to be on at the moment.

His way may work for some of his patients, but I really don’t see the point in changing something that you know works - just to please him.

Next time you see him, you can say you tried his way and it failed, so you went back to what you know works. If he doesn’t like it - tough! It’s your body, not his.

But just make sure nothing else is going on - bit concerned at the high BP - although that may be you getting stressed.

Please let us know the situation after your appointments.

[Wraysbury in reply to DorsetLady]

Thanks so much all you guys. What I really love about this site is I’m totally quiet for months and then I ask a question and you’re still all there!! Bless you all 💖

[Wraysbury in reply to DorsetLady]

Hi I’ve spoken to my Consultant who has ordered bloods for me and to stay on 10mgs for 2 weeks or until I stabilise again if that takes longer than 2 wks and then return to DSNS method! I’m seeing the optician next wk but have read that pred can cause blurred vision and as the dizziness has gone and the blurred vision is intermittent, I might save my pennies and just leave this for now. I’m already feeling better having taken 10mgs for 3 days, just extreme fatigue.

[DorsetLady PMRGCAuk volunteer in reply to Wraysbury]

Good on feeling better, and nice to hear a consultant who has listened to you, and been sensible about staying at 10mg until symptoms settle.

You are right in saying that Pred can affect eyes , but just monitor things. If you’re not 100% sure then the cost of a sight test is worth it - if only to put your mind at rest.

Thanks for updating.

[PMRpro Ambassador in reply to Wraysbury]

Good - sounds a sensible doctor! Glad you are feeling better - long may it last.

[Hidden]

It does seem a bit if a daft move to change a successful taper.....full stop. The main thing with a Dsns taper is that if it's doable at 1mg drops, it's just about as quick but is less likely to flare than an overnight drop in my experience. Sometimes stopping at a dose, all things being equal, for a long time also helps.

I think taking jinasc Dr Mackie letter to your rheumy (and your Dr) is a great idea. Stick to what you know if you have the pred to do it. If not enough pred ask for it based on Dsns support outlined above.

[scrambledegg]

I may be missing something here, but with your consultants suggested method it takes you 2 months to get from 10mg to 9mg per day. The DSNS methods are around 2 months per 1mg drop at that level too?

[Wraysbury in reply to scrambledegg]

Oh really?? Ok. Thanks

[scrambledegg]

As I said, I may be missing something. Anyone out there with more experience care to comment?

[HeronNS in reply to scrambledegg]

That was my thought. There might be a difference of two weeks longer to do each step, provided one continues to drop by 1 mg at a time. By around 7, 8, maybe 10, a lot of people find .5 mg easier and more likely to be successful. As we keep saying, it isn't slow if it works!

[PMRpro Ambassador in reply to scrambledegg]

I have! You are quite correct!

[PMRpro Ambassador]

Hate to break it to your doctor - but the DSNS way is always faster than he is suggesting depending on where you start!!!! Why? because the patient is in control and sees immediately if they have gone too low so can stop. And if you start at 1 day new, 4 days old, that is 1mg in a months.

And how would he know? Has he ever tapered a pred dose? If it ain't broke - don't try to "fix" it.

In the medical literature it admits that the primary cause of flares is trying to reduce too fast or too far. When you have a flare it sends you back to a higher dose - and slows it all down.

[Wraysbury in reply to PMRpro]

Thanks everyone again. I feel rather stupid😩 I had reduced so successfully and should have continued on DSNS. I think I got complacent! Im actually going to try .5 mgs this time and DSNS cos I don’t want to risk failing and going back up again. I found when coming down from 15 mgs that I occasionally had to go down just .5 mgs instead of 1mg

[Hidden in reply to Wraysbury]

Me too Wraysbury. 0.5mg better for me.

Don't feel stupid. Despite everything there is a default position a lot of us go to with drs, never mind specialists. Yes Dr...no Dr....I often come home frustrated at how compliant I end up being sometimes.,,🌻

[Wraysbury in reply to Hidden]

Thanks x

[PMRpro Ambassador in reply to Wraysbury]

Not stupid - we all want our doctors to know what they are talking about!

Some people are very sensitive to a chang ein dose - and some of us have tougher and more active autoimmune problems than others. There is no one-size-fits-all and we know our bodies better than they do usually!

[Mary63 in reply to Wraysbury]

Please don’t feel stupid. We are are all on a learning curve

[HeronNS]

I believe the alternating of dosage is a problem. I tried that once (at a lower dose level) because others have said that's what they do, and my body got so confused and I never really felt well that I gave it up quite quickly. DSNS is designed to prevent exactly the sort of issues alternating doses, or overnight drops, can cause.

I also think there's nothing wrong with tapering by .5 per taper by the time one gets into single figures. For a few months I would drop .5 mg, using DSNS, and if all was going well halfway through the taper I would drop the second .5. That meant I never dropped by more than .5 mg at a time, my daily dose never varied by more than .5 mg. After a while I dropped by .5 for the whole taper. The lower the dose, the slower the taper became. Using this method I tapered from 8 (initial start was 15 mg) and was at 3 mg by the end of my first year on pred. I don't think any doctor could complain that was too slow, but I don't believe I could have succeeded without DSNS.

[Louisepenygraig]

My consultant suggested tapering by alternating doses too but my GP is happy with my using the DSNS method. Having said that I have failed yet (after over 2 years) to get below 10mg. I've just come back from a short holiday and am going to try dropping to 9.5 once I've settled back at home.

[Wraysbury in reply to Louisepenygraig]

It’s really not like me not to be assertive. I think I slipped into patient mode instead of being me. It won’t happen again!

[Mary63 in reply to Louisepenygraig]

It’s never a failure.

[PMRpro Ambassador in reply to Louisepenygraig]

It took me over 4 years to get reliably below 10mg. And I have been back above as well.

[Blearyeyed]

In other words , " If it ain't broke don't fix it!"

If the method was working for you , stick with it .

Fiddling with your method and then upsetting your body which has got used to the other tapering method ( which is just as quick!!) is ridiculous , as mucking up the way you feel ends up causing you to slow down the taper or even have a Flare which makes you increase.

Strikes me as one if these situations when even though your Specialist sees an alternative works they aren't satisfied unless they feel it is only their advice that is being followed.

Go back to what you are confident with xx

[Wraysbury in reply to Blearyeyed]

Today the shoulder and neck pains are back to a degree. So it seems like I’ve bought a flair up on by doing this and yday was the start. I guess if nothing else it really shows how successful the DSNS method is. And how stupid it is to change a successful taper. 😩

[Blearyeyed in reply to Wraysbury]

If you just put a reminder of the dates in your Diary , then when you speak to your Rheumatologist or GP again about why you returned to your original taper method and would prefer to stay on it you can tell them the date you started and when the Flare up occurred . You can also mention that your taper before that had not caused the same type of withdrawal side effects or return of Pain.

I assume you have gone back to your previous dose for a week to let it settle down before you go back to tapering the way that works for you.

Take care xx

[PMRpro Ambassador in reply to Wraysbury]

As Bee says, i a situation like this keeping a diary is a very useful aid to convince sceptical doctors. All you need is a note of dose, symptoms improving/deteriorating, activites that might impinge.

[Thomas45]

I would rather have a consultant "disappointed" than suffer using his or her ridiculous plan. My GP told me I would need to take a reducing dose of prednisolone.

He told me not to rush it. He knew I wouldn't exceed the starting dose without consulting him, nor, if he gave me 6 months supply of tablets would I overdose. As he said I know how my body feels better than he does.

I can remember being stuck at 5mg for several months. That was not a problem for him. His main concerns were that I didn't rush it and that I had enough tablets,

I did get to 1mg every 7days after three years and seven months, which hindsight tells me was probably three months too soon.

Four years on I'm still not back to where I was before PMR struck. I noticed recently that I can stand up when getting out of the car's driving seat without pressing on my thighs, for the first time for eight or more years. I have other ailments which slow me down (permanent atrial fibrillation, chronic asthma, lymphoedema in my lower legs, and chronic urticaria) but I lead a reasonably active life.

I hope you get back to your former DSNS regime soon

[Blearyeyed in reply to Thomas45]

You have been very lucky , which I'm glad about .

Getting a GP or Rheumatologist that treats You as a partner in your treatment can be very rare though .

Unfortunately , no matter how much sense you may be talking , and evidence you show them , lots of Doctors still won't work with their Patients , and put them under an incredible amount of pressure and extra stress to follow unrealistic ," by the book", taper methods.

And definitely not intending to bang the Gender Drum ( it's not my instrument of choice!) , but there is something I have noticed over time reading Patient experiences on the Forum .

Often Male Patients are given more credit for being responsible , left to their own initiatives , and put under less pressure to follow orders , especially in relation to tapering, than Female Patients , based on my reading.

Maybe that is because Men are more used to standing up for themselves in a Formal environment, or Doctors aren't as confident to brow beat a Sensible Man in the same way as a Sensible Female. Doctors also don't seem to instantaneously assume that a Male Patients' objections are caused by anxiety and because of that consider their opinion properly before dismissing it.

I keep meaning to take time to read through old links just to clarify what I have observed and see just how different the Patient / Doctor experience is between Genders and Ages.

Obviously , we all agree that all Patients are individual , and , just as with medications , styles of Consultation can't be exactly the same for all , but when a distinct pattern emerges that has nothing to do with peoples Medical History but " Who " they are , I think it would be helpful for more research to be conducted into it .

I would love to get the same respect and trust from my GPs as my Husband does.

Especially , as it is usually me who explains to him what the GP meant when there is something he didn't understand.