Prednisolone tapering

[Graciejack4]

Has anyone experienced head pain on prednisolone tapering? I am a week into 20mg reduced from 30mg previously for GCA. I have pain at the back of my head, not sure if it is related to GCA .

[SheffieldJane]

It really could be GCA related. Talk to your doctor about a slower taper. Ask about increasing again to see if this pain goes. Is it like your head pain on diagnosis?

[Graciejack4 in reply to SheffieldJane]

It is similar but at the back of my head rather than the right side before diagnosis, I have been very anxious about tapering so not sure if some of it is anxiety related but it is difficult to know. I was diagnosed in June after loss of sight in my left eye.

[HeronNS]

It might be, I'm sure a more experienced person will be along soon. However, was 30 your starting dose? And have you dropped by 10 mg all in one step? Even if you started at a higher dose by the time you get to 30 a 5 mg taper would be advisable. The lower the slower!

[DorsetLady PMRGCAuk volunteer]

From personal knowledge of GCA, would say the reduction from 30mg to 20mg was too big, and also the fact that it’s taken about a week to cause an issue, it’s a flare of illness.

More sensible reduction would have been 30-25-22.5-20mg, but I guess you were following doctors instructions. That plan may work for some, but not all.

You need to discuss with your medical team, and I would suggest you go back to 30mg and then reduce as detailed above.

You haven’t given any information on your profile - would be useful to know when diagnosed, starting dose, tapering to date etc….

[Graciejack4 in reply to DorsetLady]

I started on 60mg originally in June I have been reducing by 10mg every 2 weeks as advised by my rheumatologist and haven’t had any issues until now. I’m hoping I can get some advice tomorrow but might go back to 30mg .

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

At higher doses most can manage 10mg reduction every 2-3 weeks, but once you reach 30mg then you need to slow down.

The mantra of “reduction should be no larger than 10% of current dose” is a wise one to remember …trouble not sure all Rheumy’s are aware or follow.

Let us know what rheumy says.

[Graciejack4 in reply to DorsetLady]

Thank you yes it might be too much, I’ll let you know how I get on. In the meantime I might go back to 30mg.

[Kendrew]

Just want to say that I have always had head pain temporarily with each taper and more persistent pain on the two occasions I was taking 10mg down to 7.5mg. I was thoroughly checked out for GCA but in my case it was a combination of steroid withdrawal symptoms, occipital neuralgia and very tight neck and shoulder muscles sending referred pain up back of my head and over my scalp.Whatever the cause, you mustn't assume anything and must always eliminate GCA.

[Graciejack4 in reply to Kendrew]

Thank you for your reply, it’s good to hear other people’s experiences I am only 3 months post diagnosis with GCA and it is on my mind 24 hrs a day ☹️I’m hoping things get better for me soon.

[Kendrew in reply to Graciejack4]

Things will get better. The initial period after diagnosis is always quite scary and probably the time when we've all felt most vulnerable and anxious. As you become more familiar with the condition and learn more about it, you'll become less anxious and more confident about managing it. You don't need to be scared of GCA but you do need to educate yourself as much as possible about it so you know when an intervention may be required.

Read all the information here, (particularly in FAQ's) and you'll see that there are many people living a good life with GCA and who manage for the most part to maintain some stability.

There will always be hurdles to overcome but that's when this forum is here to help.

[Graciejack4 in reply to Kendrew]

Thank you so much it’s good to have this platform for help and advice.

[PMRpro Ambassador]

I think that you should go back to 30mg until you can speak to your doctors. Occipital pain can be due to GCA - that is sort of where the knowledge bumps are Always better safe than sorry.

[cycli]

I'm still on 40 mg Graciejack4 so don't rush.

[Hidden]

It’s confusing because the withdrawal from pred gives the same symptoms as GCA/PMR. Hope you’re doing it slowly. You may need a blood test to see if your inflammation is active. Been there twice hope you’re ok x

[PMRpro Ambassador in reply to Hidden]

Not always - and it is possible to minimise the chances of withdrawal effects by making the changes in dose as small as possible.

[DorsetLady PMRGCAuk volunteer]

Further to Sheffield-Karey’ s response -

It is confusing sometimes, but this should help you distinguish between the two -

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days, but should then disappear.

It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some the effects can be eased by paracetamol. It’s one reason why the various slow tapering methods were devised.

A flare happens when you’ve gone below the level of Pred your illness requires -

either you have reduced too low or

you are too active for your medication to control the illness.

It can take anything from a couple of days up to 2 weeks to materialise- and (usually) the symptoms are similar to those pre diagnosis.

Paracetamol (or equivalent) will not help.

The only thing that does help is an increase in dose.

Excerpt from this post - healthunlocked.com/pmrgcauk...

[Graciejack4 in reply to DorsetLady]

Thank you that’s really useful information 👍

[Skysey]

It is very scary when you are first diagnosed. I remember being so anxious about everything health related at that time. However, things do get better. This forum has been amazing. I think for you at this stage, the reduction is too great and too fast. I would always err on the side of caution with GCA. I have had temple aches on tapering and have had a couple of flares. Once I reached lower doses of pred, I tapered slowly. As others have said, it is best to speak to your rheumatologist. A blood test to check inflammatory markers is important too. I wish you well. Keep us updated on your progress.

[Graciejack4 in reply to Skysey]

Thank you for your reply, I had bloods taken a week ago with my Rheumatologist, he said he would call me if there was an issue , he didn’t call so I assumed it was ok, to be fair my markers have been very low recently but understand they can rise slightly with the reduction of the pred dose.

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

Blood markers can fluctuate-but so many things other than the dose of Pred can affect them….which is why we always say symptoms, or lack of them are the key to how you are doing.

Sorry to bombard you with more reading, but this post gives more info on blood tests, before and during GCA/PMR

[richardwayne999]

Every time I reduce I end up with a pain over my left eye and what I call the helicopters like someone has put a washing machine on full spin in your stomach, This usually disappears after around 3 days while your body gets used to the lower levels of steroids, I have never dropped 10 mg in one go though, I would agree that you need to taper a lot slower. you have top give your adrenal glands time to wake up again, I would try 2mg at a time until you get down to 10 mg and then 1 mg at around every 3 weeks. I started on 30 mg for PMR a year ago and I am down to 4 mg now so slowly does it, hope this helps regards Richard

[DorsetLady PMRGCAuk volunteer in reply to richardwayne999]

Bigger reductions of 10mg can be and are taken on GCA doses….certainly down to around 30mg…but from personal experience, smaller drops need to be made as I suggested to Graciejack4.

Most GCA patients can probably manage 30-25-20mg, then 2.5mg drops to either 15mg or 12.5mg…but from then on 1mg or even 0.5mg as they get very low.

You don’t need to be concerned about the adrenals until you get into single figures.

[Graciejack4 in reply to richardwayne999]

Thank you for your reply, I was originally on 60mg at diagnosis and my regime was given to me by my Rheumatologist and Neuro ophthalmologist to reduce by 10mg every 2 weeks until 20mg then after that reduce by 2.5mg increments. This seems to be the current standard regime for the UK.

[DorsetLady PMRGCAuk volunteer in reply to Graciejack4]

It is for GCA…RW has PMR

[PatriciaSmith]

Yes, as I decrease the dosage, I wake up with a sore head or headache.

[DorsetLady PMRGCAuk volunteer in reply to PatriciaSmith]

If it only last few days could be steroid withdrawal so painkillers may help.