Finishing prednisolone

[Sheenalady]

I’m on 1mg of prednisolone and been informed that when I come off, I have to stay in for 6 weeks

Has anyone else been informed of this ?

[SnazzyD]

Hello, what do you mean by stay in?

[Sheenalady in reply to SnazzyD]

I have not to go out into the community for 6 weeks

[SnazzyD in reply to Sheenalady]

That’s more if you are on high doses. Perhaps you misunderstood them? In terms of infection risk, 1mg is barely different to 0mg. Do taper to zero slowly, that 1mg can make a lot of difference if your adrenal function hasn’t caught up yet. I cut 1mg in half and did 0.5mg for months

[DorsetLady PMRGCAuk volunteer]

On what grounds? “Official shielding” finished today...but the difference between 1mg and zero is minimal so don’t see the connection.

[PMRpro Ambassador]

Who said that - and why? I can't see any reason why if you can go out on 1mg you can't on zero!

1mg pred is negligible in terms of effects on the body - but it can be enough to keep very low level PMR under wraps. Don't imagine that you can definitely just stop and the PMR is gone.

[Sheenalady]

I have GCA my specialist told me last year

[DorsetLady PMRGCAuk volunteer in reply to Sheenalady]

How long have you been on Pred then?

A bit more information on your profile would help, or at least in your post. At the moment we are trying to answer a question with no background to go on.

[PMRpro Ambassador in reply to Sheenalady]

OK- fair enough - but who said you must stay at home and why? In over 12 years on the forums I have never heard that. And even with Covid - unless you have been shielding for the last year, there is no reason why you can't go out now.

[piglette]

Are you staying at home at the moment? If not I can see no reason why you should if you drop to zero.

[Sheenalady in reply to piglette]

Hi I was diagnosed in September 2019 with GCA was put on 50mg, had a relapse on November 24 2019 was put on 60 mg.

Was informed not to go to India which was booked for 27/11/19 for my partners nieces wedding that we had already book. We were then going onto Goa for another 10 days

But you only live once so I decided to go

Had bad 5 days then felt great in Goa

On my return I was Really bad

I meet my specialist in August 2020 and she informed me that when I finish my prednisolone which I should of been off in January 21. I was informed I must stay at home for 6 weeks

I had relapsed in January and went back up by 1 mg taking my time to tapper off

Now on 1mg, I am taking my time to come off

Just wonder if anyone had the same information

[piglette in reply to Sheenalady]

It seems there is no reason you should stay at home in that case, if you only need to stay at home six weeks from then. If you feel OK. You can always check with the specialist.

[SheffieldJane in reply to Sheenalady]

My latest shielding letter basically said that shielding had finished and I could return to work etc but I should take all the hand washing, social distancing, mask wearing, contact with others, avoiding busy places/ supermarkets etc. Precautions. Not really sure what I have been liberated to do. My disease is still active and I’m on 10 mgs of Pred and Tocilizumab injections and do not claim benefits or have a job. I went to B&Q garden centre ( impressive control of customers) I felt ecstatic. Who knew that Camelia Japonicas were the meaning of life.

[MrsNails in reply to SheffieldJane]

We bought a Camellia & a Clematis yesterday 🌸💗🌸

[Viv54 in reply to MrsNails]

Haha , snap so did we ! x

[York54 in reply to MrsNails]

We bought 4 shrubs and some perennials! We love our gardening 🌺🌺🌺🌸🌸🌼🌼🌻🌻

[SheffieldJane in reply to MrsNails]

Can’t take my eyes off it. The simple joys are back.🌷

[pomeranion in reply to SheffieldJane]

I just ordered an Easter lily for my home. Waiting for delivery. I can only hope it will bring me as much joy as your plants do for you. My biggest regret is I had to give up my gardening after moving from large home and 5 acre property to senior apartment. For necessity sake. May everyone have a happy and blessed Easter. You have all made a significant impact on my journey with PMR. Can't thank you enough.

[PMRpro Ambassador in reply to pomeranion]

When that happpened to my mother she sought permission to look after the patch in front of the block of flats. It was given with pleasure and it looked a lot better than when some paid gardener weeded it ...

[Coffeebeans in reply to Sheenalady]

Did she mean stay in the UK (or where ever you are ) for 6 weeks in case of flare up's. As opposed to staying inside? That would make sense.

[MrsNails in reply to Coffeebeans]

That’s how l would have interpreted it....

[Casia]

I came off pred last December but spent about 3 months on 1/2 mg before coming off completely. I certainly didn’t need to rest any more than normal and have had no ill effects. I dis taper to 0 very slowly.

[Mondelo]

Was it April 1st when you were told this ?

[Arflane97G]

I reached 1 mg last November/ early December - actually had a face to face with my rheumatologist to discuss last tapering plan and she never mentioned staying in

[Floridafan]

“ I was informed I must stay at home for 6 weeks“ - possibly she meant stay home and not travel abroad for 6 weeks and you have interpreted it as “stay in for 6 weeks”. It might be worth asking your GP for advice

[Sheenalady]

Hi All Thank you all for your comments I have been going out at times for food shopping but been extra careful ie all PPE and gelling my hands every few minutes

Im still washing all my food before putting it away

I will contact my specialist next week and keep you updated

Many many thanks x