Headaches: Hi everyone, I’m desperately trying to... - PMRGCAuk

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Headaches

2013mayo profile image

Hi everyone,

I’m desperately trying to cut down on pred, for a about 10 days I’ve reduced quite a lot, I’ve got down to 2 or 3 mg per day but have started to get headaches again also feeling very tired, plus started getting very sore tongue, ulcers and pain. I was taking 5mg before I started to reduce.

Any thoughts appreciated .

Xx

Forgot to add some double vision, not all the but at the end of the day when I’m more tired.

75 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Why the sudden rush...anything to do with recent operation, or some other reason?

5mg is quite a low dose, and as you have been through a lot recently, a fast taper from that level could well be partially related to adrenals struggling.

Think we need a bit more info on how you felt at 5mg, and how you've cut down...

2013mayo profile image
2013mayo in reply to DorsetLady

Well I thought I was doing so well on 5mg I ought to try and cut down, there was no reason other than everyone on this site seems determined to get off pred.Probably a bit silly considering my recent op. 🤔

Xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 2013mayo

Well, I think you've answered yourself...so go back to 5mg, and then reduce slowly - 0.5mg a time and a slow taper if required - just one example...healthunlocked.com/pmrgcauk...

..as for what everybody else is doing...forget it, you go at your pace - not mine*, not Fred Bloggs nor anyone else...😉🤦‍♀️

*.. which happened to be very slow once I got to single figures...no pain, no flares, no problem. as I said took as long to get from 10mg to zero as it did to get from 80mg to 10mg. ..

🌸

2013mayo profile image
2013mayo in reply to DorsetLady

I’m silly billy, back to 5mg if it’s not enough I know the answer.😍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 2013mayo

Yes, but as jinasc says , get double vision checked pronto

Grammy80 profile image
Grammy80 in reply to 2013mayo

I'm so thankful that you went back up with your dosage. I hope you get your vision checked as the wise ones all say. If I got to five mg, EVER, I would be so overjoyed. Feel well and don't try to court difficulty. I have a friend who was diagnosed with GCA over 20 years ago and has been in the single digits for about 12 years. I got an email from her hubby yesterday and her Doctor told her that a UTI caused a GCA flare when she presented with double vision last week. So please...keep the insurance policy of a few mgs. 💖

2013mayo profile image
2013mayo in reply to Grammy80

Thank you😍

Boss302Fan profile image
Boss302Fan in reply to 2013mayo

You stated, “…than everyone on this site seems determined to get off pred.”

Who? Everyone one this site including me keep saying it’s not about getting off pred! We’re always saying it’s about tapering slowly so to be able to find the minimum dose necessary to manage the disease without going past it. Tapering too quickly can result in a build up of inflammation with sudden onset of a flare that requires a higher dose for a period of time to remove before going back to the last dose where the PMR is under control.

Those coming to this site often have the misdirection of getting off Pred ASAP. That’s provided by doctors who may be misinformed. If you have a doctor who is pushing you with a boiler plate approach to reduce Pred with no correlation to your PMR symptoms I’d suggest you ask for more information like, why? Do you have some other pre-existing condition that being on Pred can adversely affect? Are you experiencing side-effects to Pred that are dangerous and very difficult to manage? Ask for specifics and I wouldn’t

accept some grandiose statement listing all the potential side effects.

2013mayo profile image
2013mayo in reply to Boss302Fan

HiI just got the impression people didn’t like taking pred and wanted to cut down ASAP, maybe I’ve misinterpreted what they were trying to do.

I’m not experiencing any adverse effects, I just thought that’s what I need to do. Yes, rather foolishly I’ll agree.

Lesson learnt.

X

PMRpro profile image
PMRproAmbassador in reply to 2013mayo

By no means everyone is desperate to get off pred - and at this stage you need to go slower rather than faster. 5mg is plenty for your adrenal function to still be in hibernation and that takes time to return. Not to mention that it is loads for managing PMR - it is still there in the background, Race down to zero and you are opening yoursefl up to all sorts of potential problems.

2013mayo profile image
2013mayo in reply to PMRpro

Hi Yes I realise that now 🙁.

I’m back on 5mg and feel more my normal self.

Thank you

😍

Hi. I was about to ask the same question as Dorset Lady- why are you desperate to reduce your dose? PMR requires lots of necessary patience but we'll look for your reasons if you come back to us so that a bit more light can be shed on that subject.I will say that your double vision needs to be checked so would advise you to report that straight away because of GCA concerns.

2013mayo profile image
2013mayo in reply to 123-go

Yes I’m being silly, see above reply.🤔🙁

Xx

MrsNails profile image
MrsNailsPMRGCAuk volunteer

Mayo - why the sudden rush? Basically you’ve dropped by 50% (ish) & not withstanding the headaches you could make yourself very unwell from the drop.

If you want to drop quickly for some reason - you must make a plan & get your Doctors OK unless this was at his request.

Please give us some more information & we can advise you.

MrsN

2013mayo profile image
2013mayo in reply to MrsNails

I’m laughing at myself, what a silly girl, I practically know what I’ve got to do, back to 5mg.Thank you

Re the double vision, I get that on 5mg sometimes, my rheumatologist has not been in touch for many months now, I think they gave up on me. Interestingly I’ve just had a blood test request for blood sugar level from my doc as I’m on pred, they never wanted one before.

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to 2013mayo

Well Done! We sometimes get an idea & think we’ll run with it & only run into problems. Glad you’re going back to where you were - stay there until you feel better & then only then start a very slow Taper in 0.5mg Drops only using one of the slow plans…..

You know what to do really, just put this down to a little blip 😉

Hope you improve soon 💐

MrsN

2013mayo profile image
2013mayo in reply to MrsNails

Thank you.Xx😍

123-go profile image
123-go in reply to 2013mayo

Sometimes some of us know what we need to do but just need that little bit of encouragement and reassurance. I'm pleased that you've been able to organise your thoughts more clearly now. I wish you a smoother path ahead. 🙂

2013mayo profile image
2013mayo in reply to 123-go

Thank you😍

Hi there, nothing to add to the previous comments other than not everyone here is in a rush to get off Pred per se. Yes, any medication is a "pain" but I am happy to stay with it for as long as my body/inflammation needs it. 2 years - no chance - 18 months in and on 8mg, 3 years maybe, 4 years more likely or longer if required. I don't plan into the future regarding meds they will come to an end when they are not needed, so no point in worrying about it.

2013mayo profile image
2013mayo in reply to Bcol

😍 yes I know, thank you

Bcol profile image
Bcol in reply to 2013mayo

Still think you need to get that double vision checked, just for peace of mind if nothing else.

2013mayo profile image
2013mayo in reply to Bcol

I’ll email rheumatologist .Xx

Bcol profile image
Bcol in reply to 2013mayo

Fantastic

I would want that 'double vision' looked at like yesterday. Get hold of your GP or a visit to A&E. I would also increase to 10mg and stay there till you get medical advice on the double vision.

2013mayo profile image
2013mayo in reply to jinasc

Well it’s not there all the time, I’ve noticed it just recently in the evenings, at first I thought I imagined it, as for seeing any one medical these days, really ??Crazy the situation people are in regarding doctors, they say don’t go to A/E but then what are you supposed to do ?

I’ll see what 5mg pred does.

😍 xx

Hi 2013mayo 😊

I’d go to a local optician specialising in minor (or sudden - less than six weeks duration) eye conditions- as suggested by Mrs Nails.

Easy to find online (hopefully) or phone your local optician or surgery to ask. Take care of yourself!

Nextoneplease x

I’m going to contact rheumatologist .Xx

That’s great - hope you get advice soon 😊x

MrsNails profile image
MrsNailsPMRGCAuk volunteer

Hi 2013mayo

Don’t bother with GP or A&E read the following on MECS

healthunlocked.com/pmrgcauk...

primaryeyecare.co.uk/servic...

You can get to see an Optician participating in the scheme usually the same day but as it’s afternoon now it maybe tomorrow.

You can find your local participating Opticians on line or ring the Surgery for the Number.

There is No Charge - it’s Not an Eye Test but an thorough Examination of your eyes with Specialised Equipment - you will be given the results there & then with any further action…..

Thank you MrsN 😊 Have read and inwardly digested and saved to files for easy reference!

Also we have an eye hospital locally which has a seven day a week casualty triage line. I used it in the summer when I had an eye infection (before I knew about MECS) so that might be another option for someone, if they live within range of an eye hospital.

Have to say it was brilliant to speak directly with a specialist, with no need to phone surgery and get a referral 😊

Thanks again.

Nextoneplease x

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Nextoneplease

I’m just writing up a Post re FAQ’s & the information contained in there. But l found out through my experience that Shrewsbury is the Specialist Eye Hospital after sitting in Telford for Seven Hours….

But we were new to the area at the time! Experience is a bitter teacher…..

The reduction should be done very slowly ie by 1mg on alternate day's.

Well I thought I was but obviously it wasn’t slow enough.Feeling better already just by upping the dose.

😍

Glad you're feeling better, slowly does it!

Thank you😍

My doctor advised reducing by 0.5 per month from 10mg and told me I might be in 2mg or 1 mg forever. That doesn't bother me as long as I am pain free.

MrsNails profile image
MrsNailsPMRGCAuk volunteer in reply to Dambusters

Same advice as l had a long time ago from My Lovely Dr Lim (sadly no longer with us RIP) but she felt l’d probably have to remain on 5mg or there about indefinitely…..

2013mayo profile image
2013mayo in reply to MrsNails

Same again, phew, maybe I just need to listen to my body, it needs what it needs.😍

2013mayo profile image
2013mayo in reply to Dambusters

Wow, that’s incredible, my husband was told by a junior doc that I’d be better in a year, I was sat in the room at the time. He certainly needs to brush up on GCA and PMR before he comes out with statements like that in future.Xx

Reducing It is such a nightmare . But after 15 yrs of up and down on pred , my advice is slowly, slowly. Good luck

2013mayo profile image
2013mayo in reply to Avadip12

Thank you,Yes I’ve learnt my lesson, I’m back on a higher dose and feel better.

Couldn’t believe how bad I felt on 2mg.

😍

So glad you feel better 😊 x

And as for that doc telling your husband you’d be okay in a year, well……😳

🤣 I agree😍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 2013mayo

Sometimes it takes a jolt like that you make you realise how good your previous doses was!

2013mayo profile image
2013mayo in reply to DorsetLady

I know, I feel so much better now

😍

All I can say is that it took me over a year getting from 5mg to 2mg of Pred per day very, very slowly and no relapses. I am now three weeks away from taking my last one (hopefully) two and a half years after starting on 60mg per day for GCA. The tiredness started at 5mg and just gets worse as I approach ground zero and there's no guarantee that it'll ever go away. So it may eventually come down to a big decision to go back on 5mg per day or suffer tiredness for life. Hopefully not.

2013mayo profile image
2013mayo in reply to Slowday

I’m trying,Too fast 🤔

😍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Slowday

I would say the tiredness is adrenal related...I had similar whilst reducing from 6mg down to 3mg...the only way is a slow taper, and patience...

.. or maybe, before you consider going back up to 5mg requesting a test to check cortisol levels ...GP can do a simple test in morning to check, and if necessary then refer for a more in depth test - Synacthen Test

What a timely post. I have been having headaches recently - they don't feel like the headaches i started out with (pounding) when I was prescribed 40mg pred last August. But this morning when I started work, I was seeing blacked out areas and seeing double - this is a first. So following this thread closely. I am still on 10mg per day.

Hi softekcom 😊

Well, I don’t want to overreact but I really don’t like the sound of this! Are you still having these effects?

In any case I’d get yourself to an urgent care centre or A&E ASAP - please don’t take risks with your sight x

I hope someone else with more experience will be along soon too - but don’t delay!

Nextoneplease x

If in the UK. You could dial 111 or go to local optician specialising in new eye conditions - but if it were me I’d go straight to A&E and tell them I had GCA

It's gone. It lasted for perhaps 30 mins. I could not read the computer screen and gave up. Kept rubbing my eyes and squinting - no use. No dizziness, so definitely not a blackout. Strange. I will take your advice and get to an optician asap.

Honestly I think this needs assessment today. Do not delay!! It could be all manner of things and I hope all’s well - but please don’t take risks 😊x

PMRpro profile image
PMRproAmbassador in reply to softekcom

Transient visual symptoms can be the start of GCA - or a symptom of a TIA (ministroke) as well as other things. Never something to be ignored ...

softekcom profile image
softekcom in reply to PMRpro

Yes, the doc did mention that. One of the things that came up when they examined my eyes yesterday was that I have nystagmus, which can come about after a stroke.

2013mayo profile image
2013mayo in reply to softekcom

Hi,That’s how my GCA started.

Take it slow, learn from me, going too fast doesn’t work.

😍

softekcom profile image
softekcom in reply to 2013mayo

Have called the GP - no appointments available. They asked me to call 111. I did, now waiting for a clinician to call back.

Good, glad to read this x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to softekcom

Please keep us informed, and definitely accentuate the GCA factor/sight loss possibility ....don't be fobbed off my someone who isn't aware of consequences.

softekcom profile image
softekcom in reply to DorsetLady

Nurse called, asked me to go in to A&E. Fingers crossed it's a false alarm.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to softekcom

Let's hope so, but best to know for sure...as and when please let us know.

2013mayo profile image
2013mayo in reply to softekcom

🤞

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to softekcom

As Nextoneplease and 2013mayo have said, please get this checked as a matter of priority... 40mg to 10mg in less than a year is quick for GCA, especially when eyes are affected.

You are in UK, so A&E preferably, but at least ring 111, GP or get yourself an immediate optician's appointment.

It may not be directly related to your GCA, but it does need to be ruled out...sight loss can happen with days, or even hours..

If it's a false alarm so be it, but better safe than sorry.

2013mayo profile image
2013mayo in reply to DorsetLady

Feel better taking 5mg😍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to 2013mayo

Good...

softekcom profile image
softekcom in reply to 2013mayo

Good to hear that👍🏾

How are you getting on, softekcom?

Hope A & E have treated you well x

They have been brilliant. I am waiting for my ride home now.

CT scan (nothing to worry about), ecg, blood tests. Even before any of the tests / results came I was given 30mg pred to top up the 10mg I took this morning. (40mg because this was my original prescription last year in Aug.) The doc said it was probably gca and best course of action to prevent any damage. I have to come back here tomorrow morning to meet the Urgent Care rheumatologist to work out a taper plan.

I cannot thank all of you enough. I thought because the vision disturbance had sorted itself out I could wait and come in over the weekend or whenever I could get a gp appointment. But the A&E GP said a very clear NO - any vision symptoms are an emergency. So thank you, thank you, thank you!

I’m so glad it all worked out well, softekcom 😊

You can hopefully get a good sleep tonight, knowing that it’s all in hand 👏

Get some rest 😴and work out a good plan tomorrow with the Urgent Care rheumatologist xxx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to softekcom

So glad you took our advice, Have a good night’s sleep - and touch base with us when you feel up to it….🌸

agree with other posts fast reduction caused me all kinds of flare ups. my Rhumy put me back up to 15mg and headaches were gone and i felt less tired. for last year it has been a slow reduction in Pregnazone , still get headaches but less often. check with your doc.

2013mayo profile image
2013mayo in reply to Carver63

Hi,What’s pregnazone? Never heard of it, oh did you mean pred, haven’t got my head on in the right place 🤣

Xx

cycli profile image
cycli in reply to 2013mayo

Unless the Rheumy made and improper advance. Depends on the fertility of the recipient I suppose.

2013mayo profile image
2013mayo in reply to cycli

🤣🤣🤣😍

crap eh can't spell and my head is numb

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