Tapering and change of status

[Phoenix51]

So I started off ( in January) on 40mg prednisolone which was then upped to 60mg. I have been tapering and was on 30 when my gp told me I was classed in high risk group and should isolate for 3 months. Rheumatologist ( that I saw privately) advised reduction of 5mg per week. My question is .. once I get below 20mg and provided I am ok for the next 4 weeks I am technically no longer in the high risk group but should I continue to isolate for the remaining time due to previous dose of Pred plus GCA ( diagnosed on symptoms, CPR of 112 and swift response to Pred - no biopsy available)? I’m asking for myself but obviously it impacts on rest of my family who are also isolating with me and not going out at all to reduce the risk. Thanks

[Hidden]

Are you in the UK ? The goalposts are moving according to rheumatologists here to the extent that lower doses of pred, especially with co-morbidities like high BP or diabetes etc, should be more stringent. Really only you can make that decision with your family but please read this post yesterday and see where you will fit....

healthunlocked.com/pmrgcauk...

Btw...don't just taper for the sake for changing groups from social isolation to social distance.....GCA will want it's pred and distancing for a few weeks compared to a lifetime of potential blindness is a no brainer. GCA us not to be trifled with. Slow and steady.....it takes a minimum of around18mths for remission and many are in some dose if pred for life. Reducing too fast then having to add other meds won't help. 🌻

[Phoenix51 in reply to Hidden]

Thank you .. yes I am in the UK. The links you posted are really helpful thank you. I think on balance it would be best to continue the self isolation even when am I am on the ‘safer’ 15mg or less.

[Hidden in reply to Phoenix51]

It's better to stick rather than twist sometimes. 🌻

[Phoenix51 in reply to Hidden]

I agree , it’s just I’m so new to all of this and because of the current situation I am not able to easily contact medics and I am not currently under a clinic for management. Ive recently be diagnosed with glaucoma and they think it might be the high dose steroids plus I have got terrible blurry vision that I have read can be a side effect of the Pred so I was hoping that as I reduce the Pred my vision will be clearer. Or is that just wishful thinking? 🤞

[Hidden in reply to Phoenix51]

If glaucoma I don't know offhand, but blurred vision does even out from pred. I have diabetes so 15mg for PMR effected mine but by 8 to 10mg it evened out and I got new specs at 6mg or 7mg.

[Theziggy in reply to Hidden]

Pontoon!!!!

[PMRpro Ambassador]

Over 5mg for more than 4 weeks is now the pred criterion - and it was 10 not 20mg anyway.

I think it is easier here - everyone must stay at home and they really do. We may go out to shop for food or medical needs, But exercise must be taken within a few hundred yards of your home and you should not leave your own place of residence so if you are out in your car you are likely to be stopped and asked why. There are very few people in the shops so I feel safe enough - just as well as there is no-one to shop for us!

[Phoenix51 in reply to PMRpro]

I was going by the guidance in this link re. <20mg

healthunlocked.com/vasculit...

[PMRpro Ambassador in reply to Phoenix51]

Both the white boxes say Do you take ONE OR MORE of the medications listed in the the blue box below OR have you been taking 5mg of pred daily for more than 5 weeks? So does that take you to the yellow box or still the red one?

If it were me I would continue at home but let the family be a bit more relaxed so they can shop. But that is the primary difference now the rules are tighter. You shouldn't be out and mixing with people anyway. My daughter is high risk so in a paramedic role she is at home, but self-isolation is impossible as the son is home from uni and they only have a 2 room flat. Her husband is also an essnetial worker.

[SnazzyD]

I won’t repeat what others have said, but the effect of Pred on tissues runs on and doesn’t just disappear as soon as the dose drops, otherwise we would snap back to normal very quickly or see a rapid reduction in all effects.

[Theziggy]

From Mr Simon

These are the days of miracle and wonder

This is the long distance call

The way the camera follows us in slo-mo

The way we look to us all

The way we look to a distant constellation

That's dying in a corner of the sky

These are the days of miracle and wonder

And don't cry baby, don't cry

Don't cry

[Phoenix51]

Thank you to all for your replies 😊