Self adjusting Pred dose

[Silverfoxylady]

Hi , I'm trying to convince my mum (83)that's it's okay to adjust the dose without the advice of GP.

I read all the threads regarding adjusting your dose if symptoms return or worsen.

She has had PMR about 3years . She had the chronic headaches and pain behind eyes for ages , I explained that Pred is your version of Paracetamol ie it's a pain killer and it's the only way option to stop the pain that you are suffering. (Takes Co-Codamol also )

But no., she has to wait until a GP( after more blood) tests said yes it's a good idea !

So she increased from 5mb to 6mg ,the headaches halved in days and she feels better.

You have to wait so long for GP appointment and then it's someone new who doesn't know much about PMR.

The GP also wouldn't arrange an earlier Rheumatologist appointment. She has one in Sept.

Thus website group has given me more knowledge than the GP , just wish mum would realise !!

[PMRpro Ambassador]

Don't worry - there are members of the community who believe your mum is right and keep telling us we should obey our GPs. It doesn't seem to matter that if it takes 3 or 4 weeks to see a doctor who still hasn't the slightest clue about you, your medical history and - even more likely, PMR/GCA the reponse you get is likely to be rather less informed than your own.

It is a shame - but your mum is of a generation that thinks the GP is infallible. At least hers passed the first test. I don't suppose you could arrange to get a blood test for her more easily and often? Just to monitor her progress?

[Silverfoxylady in reply to PMRpro]

Regular blood tests would be a good idea when tapering. What's really needed is a simple tailored DIY test kit , finger prick and some indication of inflammation makers.

[PMRpro Ambassador in reply to Silverfoxylady]

Doesn't work that way - the ESR is measured by setting up a sample of whole blood in a vertical tube and measuring how far the top of the cells settle in a given time! CRP also requires very complex equipment.

[Hidden]

Perhaps you can go with her to an appointment and ask Dr to agree to approve small changes when the symptoms are evident. I know we talk a lot about doses but usually it's for ourselves rather than someone else. Your mum sounds like my dad used to be....Dr always right. Perhaps say if she reduces again and after a week or two the pain returns then can she increase until she gets a blood test. Of course in an ideal world the test will be "normal" as the dose is increased. On the off chance that the markers are still high it proves to your mum that sometimes she has to listen to her body...not just the Dr.

[DorsetLady PMRGCAuk volunteer]

I guess your mum is of the generation who thinks the doctor should always be obeyed. I wouldn’t necessary agree or disagree with that, but you shouldn’t really adjust your dose willy-nilly.

We do sometimes recommend increasing doses - but adding the caveat to check with doctor.

Some patients do have a very good relationship with their doctors and have their agreement to adjust their doses as necessary. It might be an idea next time your mum goes to GP she asks if he’s happy for her to do that.

Actually Pred is not our version of paracetamol- and shouldn’t be regarded as such. It’s a prescribed drug for good reason - not available OTC as is paracetamol.

[Silverfoxylady in reply to DorsetLady]

I know it's not our version , I was trying to simplify the explanation

[DorsetLady PMRGCAuk volunteer in reply to Silverfoxylady]

Okay, I get your point, but some patients do think Pred can be used as a painkiller in some instances- and I was just reiterating it’s not - for others as well as your mum.

[SnazzyD]

It would be handy to have some sort of symptom history to go on and reduction plan. Personally I’d rather you spoke to the GP (phone?) before taking it into your hands to adjust doses unless you’ve had the go ahead and some sort of protocol. Does a doc know about her headaches and if so they are happy it isn’t GCA? Do they come after a reduction then go? If so, have you tried dropping by 0.5mg at a time to smooth out the withdrawal.

[Hidden]

It must be very frustrating. We, my sisters and me, made lots of agreements with the Dr about treatment for non PMR things with my dad in the room getting angry. But we felt it had to be done as we didn't want to change or discontinue meds without the Dr knowing, and inline with dad's wishes that the Dr knew. To be honest I am sure that he just did what he originally wanted no matter what was agreed with us.

If your mum won't take extra pred of her own volition with her Dr's broad agreement it going to be difficult for you. I presume you are a primary carer? Perhaps explaining this to Dr would help?