Tapering from 1mg

[Healthworrier]

I have been slowly tapering and am now down to 1mg and was feeling ok. Have now started to reduce slowly to half mg having followed really slow taper. I know it's easy to blame tapering and or pred for feeling unwell but I have felt really tired and generally yuk. No aches or pains though. Don't know if I should stop tapering for a bit or if it's just coincidental. Has anyone experienced this. Thanks for reading and for all the support this group gives.

[PMRpro Ambassador]

Work by Imperial College London says that 2mg pred is plenty of steroid to compensate for adrenal function that isn't entirely up to snuff. It is very possibly your adrenal function is still lagging behind the reduction. Lots of people experience it at higher doses - you have done very well.

At this level there really is no hurry at all - I'd hang around at 1mg for a few more weeks and let your body catch up.

[Healthworrier in reply to PMRpro]

Thanks for the reply and advice I'll stay on1mg for a while longer.

[SheffieldJane]

Honestly, I’d stop for a while. You are not hurting yourself at all - even if you took 1 mg indefinitely.

[Healthworrier in reply to SheffieldJane]

Thanks for the reply.

[Exflex in reply to SheffieldJane]

Although we’re all different in how we respond to Pred, would anyone care to comment on the need for AA at 1mg, or even 1.5mg (where I hope to get to in a couple of weeks 🤞). GPs won’t risk saying you don’t need the bone savers and recommend taking a weekly dose until the end of Pred. It’s been reported that Professor Dasgupta keeps patients on 2mg for a long time, but I’ve not heard his recommendation regarding the bone saver at the dose.

[PMRpro Ambassador in reply to Exflex]

The only way you can make an informed decision is on the basis of a deascan or other reliable bone density assessment. You may be osteoporitic even with AA. I, on the other hand, have never taken AA and my bone density didn't change much despite years at above 10mg pred a day

[Exflex in reply to PMRpro]

I’m registered at a GP practice in N-Yorkshire having moved to the area. I had a medication review prior to the practice issuing prescriptions. The Dr I saw said he he would refer me for a Dexa scan, but warned there would likely be a long wait. That was back in October last year.

[PMRpro Ambassador in reply to Exflex]

No private options?

[Exflex in reply to PMRpro]

there may well be, but I guess I’m feeling risky. I stopped the bone saving Risedronate at around 2mg.

I don’t think anyone would say it’s ok to stop, just in case of medical negligence. Nor is anyone else here, it’s a matter of personal choice. But let’s acknowledge that the bone saver is both good and bad, bad if you need invasive dental surgery, for example.

[DorsetLady PMRGCAuk volunteer]

As PMR says, no rush once you get so low, so hang fire for a while.

Staying where you are will probably help your adrenals as well, the tiredness and feeling yuk may well be partially attributed to them as well. Have a look at this -if you haven’t already seen it -

healthunlocked.com/pmrgcauk...

[Healthworrier in reply to DorsetLady]

Thanks for the link. Very informative and looking at symptoms of adrenal insufficiency it sound pretty much like how I'm feeling. So 1mg for a while longer.

[SnazzyD]

My experience at this level is that even though one is so tantalisingly close to zero it can be a mile away in terms of adrenal function. Slow down even more perhaps.

What do you mean by “generally yuk?”.

[Healthworrier in reply to SnazzyD]

Thanks very frustrating to be so close but I suppose slowly wins the race. By generally yuk meant- light headed , tired, bit nauseated no appetite. Will slow down on the taper.

[SnazzyD in reply to Healthworrier]

Yes, could well be low adrenal function. At low dose levels I had to reduce by 0.5mg introduced over 8-14 weeks. It also depended on my general health, weather, what was going on in my life, etc. I took a year to go from 1mg to zero after that it took about 18 months to feel confident that my adrenal function was reliable in normal daily life. We’re all different though.

[HeronNS]

When I started pred my doctor at the time actually said that a lot of her patients indefinitely kept a supply of 1 mg tablets on hand in case they needed them even after they had completed the taper to zero. It's really hard to know how your body will react to zero pred and having tried the experiment myself I wholeheartedly concur with the advice to stay put until you are absolutely sure you are fine.

[Hirondelle]

I was feeling just like you, but on 3mg. I told my rheumatologist who asked my gp to do a cortisol test. The surgery did NOT tell me to omit steroids on morning of test but thanks to this wonderful website I knew . My cortisol test was 93, lowest should be 135, but surgery said it was ok. Rheumie disagreed and I saw endocrinologist last week. He says I have adrenal insufficiency and I am to have synacthan test soon, have to carry blue card on and know sick day rules. He also upped my steroids to 5mg to see if I feel better. Certainly all the pains have gone but still feeling lightheaded and tired. Good luck!

[Hidden]

I could have written the same thing and sorry to hear your plight. I am down to 1mg without pain, but the weary feeling coupled with nausea and being light headed - this started eighteen months ago when on a much higher dose and is getting worse. I told the Doctor. Had chest X-ray and booked in for ecg 24 hour test. She is discounting adrenals because of my low dosage, but should I push for a check on those too?

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Adrenal function should have been the first thing she checked….. sounds very much to me as if they are struggling… a simple blood test - will give cortisol levels…

See link I sent to poster further up thread - link to reply -healthunlocked.com/pmrgcauk...

In link, scroll down to nudging adrenals back into working section

Note - just seen I linked it to you in your last post.. with same advice. GP needs to brush up on her knowledge of adrenals and long term steroid use 🤦🏻‍♀️

[PMRpro Ambassador in reply to Hidden]

As DL says - adrenals should be the FIRST place to look. You probably feel as you do BECAUSE the pred dose is so low BUT your adrenal function isn't producing a top-up boost of cortisol to get the corticosteroid level up to what the body requires to function properly. Her logic is totally skewed - you have secondary adrenal insufficiency because of long term pred usage. The fact you are getting worse over a period of reducing pred slowly is a cause for concern mot complacency.

It is potentially dangerous if you were to experience any stress of any sort so if you do feel ill in such a situation, dial 999 and tell them it could be an adrenal crisis.

Why an ECG? Are you having palpitations?

[Hidden]

yes to palpitations

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

In that case you need more advice if/when it happens again - so ring NHS111 [out of hours} as your GP doesn't seem to be aware of steroid insufficiency - or a trip to A&E...

[PMRpro Ambassador in reply to Hidden]

That is a typical symptom of adrenal insufficiency, Your GP is sounding a bit useless all ways round - can you see a different one? But please call 111 or 999 if you feel really unwell.

[PMRnewbie2017]

Instead of reducing from 1mg to 0.5mg albeit using DL's slow tapering method, that is still a 50% reduction on the taper days. If you use a very sharp thin blade or craft razor blade you should be able to split a 1mg tablet into quarters. If you can manage this perhaps you could aim for a drop to 0.75mg (three quarters of a 1mg tablet). If you do decide to try this I suggest you repeat the week's schedule once or twice before dropping to the next lower level. Therefore the schedule will take two or three times as long as usual.

Dividing tablets never gives an exact dose and in fact any tablet never contains exactly the number of mg it says on the packet. It will contain Xmg plus or minus a few percent. The allowable variation is covered by the manufacturing licence and is accepted in pharmaceutical manufacturing and quality control. So you are never getting exactly the dose you think you are anyway - but it's pretty close.

[Healthworrier in reply to PMRnewbie2017]

Thanks will give this a go once I start going down from 1mg again.

[9lives]

So sorry you are struggling at the moment, but the expertise on this site should be able to help and reassure you.

This post is so informative, as I too am struggling to get from 1 mg down to .50mg

I’ve been on 1mg since January 2022, (diagnosed 2016) and decided to take the plunge, using theDSNS but the tiredness and aches to arms and back returned. At first I thought maybe pred withdrawal but it seemed to carry on for a while. So I increased yesterday to 2.5mg and again today, and all is well again.

I’ll take the advice on here too and wait a couple of weeks at 1mg then start to reduce to .75mg. But over a longer time scale.

I think it’s reassuring that you are not alone ,

I wish you well and Good luck to you x

Carole

[Healthworrier in reply to 9lives]

It's all a waiting game isn't it?Still I expect we'll get there eventually. It's so helpful to be able to call on other people's experiences and expertise. Good luck with your taper.