Happy Healthy New year.: Firstly may I wish you all... - PMRGCAuk

PMRGCAuk

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Happy Healthy New year.

Stifffingers profile image
27 Replies

Firstly may I wish you all a very Happy & pain free New year.

My question to you Professionals is simply this.I,m currently on my tapering programme, now started on 4 mg ( Been reducing by 1 mg per Month) .Approximately through your experience, is there a time limit from when you change down . IE How long does it take for your body to react? My first Two days my arms and fingers were stiff , now seemed to be settled. Going about my days , as before on 5 mg.

Regards.

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Stifffingers profile image
Stifffingers
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27 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Steroid withdrawal usually lasts 2-3 days by which time your body has acclimatised to new dose.

One way of prevent that is to follow a slow taper which takes a number of weeks to get from old dose to new rather than an “overnight “ reduction. This us just one - healthunlocked.com/pmrgcauk...

You might also like to consider tapering by either 1mg every 2 months or 0.5mg every month (works out same rate) now you are below 5mg. You are much more likely to go below your optimum dose as you get lower, there is very fine line between just enough Pred and not enough Pred!

Stifffingers profile image
Stifffingers in reply toDorsetLady

Thank you ,( all ) for your speedy responses.

I’ve been Tapering down 1 mg a month from 15 on the directions/ instructions of the Consultant. I’ve read about the 10% rule on this site . However my smallest tablet is a 1 mg . Can I break that in half?

PMRpro profile image
PMRproAmbassador in reply toStifffingers

As long as they aren't gastroresistant/enteric coated yes.

Stifffingers profile image
Stifffingers in reply toPMRpro

That I don’t know? I will have to ask the Pharmasist. Thus far , I’m coping with the 1 mg drop per Mth

PMRpro profile image
PMRproAmbassador in reply toStifffingers

Having had a look at past posts I'm assuming you are in the USA? If so, yes you can cut your pred - they are small white pills? Gastroresistant pred is only available in the UK and I doubt you are on Rayos? That also has a coating to delay its delivery rather than provide stomach protection but it is different.

Maybe you could add a bit to your profile - knowing a bit from that helps us answer questions more easily.

Stifffingers profile image
Stifffingers in reply toPMRpro

Nope In the UK: And my pills are tiny and white .

PMRpro profile image
PMRproAmbassador in reply toStifffingers

OK - white pills are plain non-coated pred. Coated are red for 5mg, brown for 2.5mg and yellow for 1mg.

Stifffingers profile image
Stifffingers in reply toPMRpro

Ok I have the Reds. No yellows

Just tiny white 1 mg

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toStifffingers

In that case white 1mg can be cut . Pill cutters available from any chemist or online from “you know who” - only a couple of £s

Stifffingers profile image
Stifffingers in reply toDorsetLady

Thank you. I’ll see how I go .

piglette profile image
piglette in reply toStifffingers

Are you sure your 1mg ones are not a very pale yellow. Do they have a line across them where you can cut them, which means they are ordinary ones? Are they the same size as the red ones? If so they probably are enteric coated.

Stifffingers profile image
Stifffingers in reply topiglette

Well , just scrutinised them . They are very tiny. Smaller than the Red 5mg.

Possible they are pale yellow , really hard to define.They do have a line down the centre.

Nope I would say it’s a white pill for sure.

Regards

PMRpro profile image
PMRproAmbassador in reply toStifffingers

The best thing is to speak to the pharmcist.

piglette profile image
piglette in reply toStifffingers

Sounds OK, as PMRPro says speak to the pharmacist. Does it say anything on the different boxes?

Stifffingers profile image
Stifffingers in reply topiglette

Nope .

SheffieldJane profile image
SheffieldJane

You are doing well. I am on 4 mgs and the drop from 5 mgs did not feel easy. In your shoes I would carry on doing as you are doing, it clearly works for you. As long as you listen to your body and pause your taper if you think that symptoms are persisting. Look out for serious fatigue/ dizziness/ nausea/ trembling, or anything odd at this stage. Your Adrenal glands will be kicking in. It is kind to your body to reduce very slowly. I am dropping by 0.5 from now on and have stayed at 4 mgs for a few weeks. I would see your doctor if you have the signs of Adrenal Insufficiency. They can refer you for a Synacthen Test, if need be. Good luck!

Stifffingers profile image
Stifffingers in reply toSheffieldJane

Thank you SJ

I’ve answered to Dorset Lady . I guess my answer would be relevant to you too .

Thank u

PMRpro profile image
PMRproAmbassador

That sounds like steroid withdrawal, your body protesting at not getting the amount it was expecting. In order to reduce that effect, the recommendation is that no reduction step should be more than 10% of the current dose - and at 5mg 1mg is already 25%.

DL has already given you details of one slowed taper, here is another:

healthunlocked.com/pmrgcauk...

Stifffingers profile image
Stifffingers in reply toPMRpro

Thank you.

My body didn’t scream “pain” I just noticed my Biceps felt a little tight. I’m currently sitting in the Sun , so my old bones are lapping it up.

I feel fine, as I have done on every Taper down . Had a traditional Thai massage 2 days ago, she got my Arms & Legs into positions I forgot I had! I expected,Pain or some reactions but had no reactions either , so hey ho..,,

The next Taper is to 3 mg in Feb . I hope .

Thankyou

PMRpro profile image
PMRproAmbassador in reply toStifffingers

If all it is is a couple of days of aches that you can tolerate and they then improve it is OK - just watch out for the pain getting worse rather than better over time.

Stifffingers profile image
Stifffingers

Thank you

HeronNS profile image
HeronNS

As Sheffieldjane said, this is the level where you need to be mindful of the adrenal glands, they do need time to get back to normal. Your doctor should be mindful of this and support a slower taper below 5 mg.

Stifffingers profile image
Stifffingers in reply toHeronNS

Alas my Dr was not / hasn’t ever been involved.Other than being copied In by the Hospital & subsequent Consultant appointments. I was due an Appt at the end of this Month, with the Consultant for a review & blood test results. Unfortunately he has moved onto pastures new., and I have been left without an Appt , or a Consultant.

I have asked my surgery to contact him at his new Hospital so I can continue our dialogue. There are apparently 900 of us now waiting for a NHS Appt , as yet in a Hospital where he hasn’t been replaced! If no joy I’ll just go and see him privately.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toStifffingers

Shouldn’t have to go private, but sometimes you have to!

Stifffingers profile image
Stifffingers

I know , but .........

Blearyeyed profile image
Blearyeyed

Steroid withdrawal is more obvious in 2/3 days but can last upto 5/7 days especially if you are on other Medications as well or have other Health issues.

Many of these symptoms can be helped with extra rest in your first week of tapering , which is why it's good to plan the first week of tapering for a quiet week in the month , or choose not to arrange activities and meetings etc in that week.

Added Withdrawal pains can usually be helped with taking the standard dose of Paracetamol through the day whilst symptoms occur and keeping well hydrated with upto 2 LTRs of water or fluids a day , as steroid withdrawal and minor increases in inflammation can be made worse by dehydration. You can be dehydrated internally even if you don't feel thirsty.

At lower doses it is good to only reduce at 0.5 mg per month until your Adrenal system has finally got 100% function back and taken back over the job that Steroids had been doing for you. Light exercises , good nutrition , relaxation and rest are all essential in helping your Adrenal system and preventing the Fatigue or Non PMR Pain that can happen while your body is coping at a Slower Pace.

Stifffingers profile image
Stifffingers in reply toBlearyeyed

Thank you.

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