More update from bop

[Bfp1]

Hi BFP update

I am leaving rehab today and able

To manage with a walker in my flat with carers. I hope. I still cannot stand from low chairs or attempt stairs so will be housebound for as long as it takes. Any info on private ambulance crews to bring me up and down welcome. Otherwise it’s just for chemo.

I spoke to my consultant last night who dropped my pred from 40’to 35 daily. Said

Go to chemo on 19th and see him in clinic 30th. He is on holiday in between.

Does this sound ok to the experts out there? I continue to be flabbergasted at the detail on some people’s tapering when I only ever deal in 5 or 10 at a time. Bit fed

Up at pace of improvement and hair thinning and face ballooning. Skin is very thin all

Advice deeply appreciated

Xxxxxxx

M.

[DorsetLady PMRGCAuk volunteer]

Hi,

Glad to hear you’re going home - hope all goes well.

As for tapering at different rates/amounts you need to remember that we cover both illnesses and the starting dose for GCA is much different from PMR.

GCA is anywhere between 40-80 mg per day whereas PMR 15-25mg per day.

So for GCA patients the early tapers can be either 5mg or 10mg, but once you get down the levels of the PMR dose then your reductions will become much smaller as well - more in the region of 2.5mg, 1mg and even 0.5mg.

[Pristina]

Poor you have really been through the mill, i am sure it will be nice to be home though. I hope you have friends/family to pop in and check you are ok? Hopefully you are now on the road to recovery and things wont be so scary. I am sure you will get plenty of advice on your tapering shortly. I wish you the best x

[Rose54]

Hi

Good news but take care and rest

The Hospital or your GP should arrange transport for Hospital appointment for you

Thier is also a Hospital Car scheme in most Hospitals

Age UK sometimes have volunteer drivers at a small cost per mile for fuel

Also search on line for your area we have a company called Driving Miss Daisy which is a private hire scheme for People in need of thier services .

xx

[PMRpro Ambassador]

As DL says, at this sort of level 5mg is quite usual - the small and more detailed stuff comes in as you get lower.

Do hope you get on OK at home - I suppose it must be because you are in a flat on one level that you have been allowed even though you still can't do stairs. I assume you don;t have a lift in the block?

[jinasc]

I do so hope that this time you will be a bit better than the last time.

However, has anyone contacted Adult Social Services, they provide someone to raise chairs, settees etc. They put a stable removable platform underneath. They also raise beds. Supply perching stools etc.

Have you been assessed by that service or did the hospital do it all before discharging you. Is a carer coming in, perhaps once a day?

Take care and do not be too proud to ask for assistance.

[Bfp1 in reply to jinasc]

They are discharging me Friday now with most of that in place

I hope xxx

[jinasc in reply to Bfp1]

I hope too, if not, lose your 'blob' 😈

[Hollyseden]

Good advice from jinasc there. Hope you get all the help and support you need.