Doing ok for now

[Sue8]

Morning folks

Today is day 4 of steroid reduction to 20mg. And although a little stiff in the mornings I actually don't feel to bad. I have took the naproxen to help reduce the side effects of reduction and it seems to have worked for now.

Headaches are problematic so paracetamol has been included.

Got myself a new pill box off amazon which is very sturdy and rainbow coloured Each day has it's own box that slides out the front then pushed in the back at the end of the day so the next day is showing. Very pleased with it though we call it my smartie box

I am off to town in a bit with my parents to buy a walking stick. Going to get a jazzy one that folds away then it can be hidden when not in use lol. The reason for giving in is because I am going to make a trip to London on Monday to se my eldest son and my 8 month old grandson who I have not seen since Easter. Just want the stick as standby as sometimes through the day my legs go like jelly and I am scared of falling and looking a prat.

Got to call the doc on Tuesday for another phone consultation, not sure weather I want to reduce another 5mg going down to 15mg as I think this is a little to quick but will have a good chat with him about my fears.

Have a good day everyone and remember

Keep smiling

[Sue8]

my new baby boy at 8 weeks is the pic but that's not me holding him lol Just to cheer you all up if you need it.

[Celtic PMRGCAuk volunteer]

Sue

Nothing more cheerful than seeing a picture of your beautiful pup - what a whopper! Bet the excitement is mounting in your household as it gets nearer to his arrival.

When you talk to your Dr on Tuesday, perhaps you could suggest you would feel happier reducing by just 2.5 to 17.5, then if that proves successful you could then go to 15 after a couple more weeks. Less shock for the body with the smaller reduction, and the lower you get, the smaller the reduction needs to be.

Have fun choosing the walking stick. I have fond memories of a rather battered old stick that a dear old lady gave me when I was struggling - it did the trick with the jelly legs though!

[Sue8 in reply to Celtic]

aaww thanks. Got a paisley pattern green walking stick foldable and adjustable. Should have been £19 but there was a faded bit on it so they let me have it for £15.

Is it the pred causing the jelly legs then??? I will chat to gp and suggest the 2.5 drop.

So wish I could have th epup now as he is at the age to leave his mum, I am even not bothered about going on holiday but it's paid for so best go. Counting the days for harley to be here

[Hidden]

Hello Sue,

So good to hear that you are feeling so positive and that things are slowly improving for you.

Hope you have a lovely time visiting family in London,

take it easy,

Karen x

[Sue8 in reply to Hidden]

Thank you, yes will be careful and take my time. It is mainly sitting on trains lol. Then will spend the day at my sons. Got my new walking stick at the grand old age of 49 but if it helps with the jelly legs then so be it.

[Celtic PMRGCAuk volunteer]

Sue

My jelly legs were at their 'jelliest' during a year of agony and non-diagnosis which continued well into the years on steroids. I do have a spinal slippage which may have added to the problem, but if all our large muscles are inflamed from the PMR and are then weakened by long term steroids, then there may be some nerve problems going on as a result. It will get better though - just keep on walking!

[Annodomini]

Sitting on the train is something I find trying, Sue. Try getting up every so often and have a little walk and also rotate your shoulders. I take a few days to recover from a train journey but it's easier than driving nowadays.

[Sue8 in reply to Annodomini]

it's only an hour and 20 mins each way so hopefully will rest up in between. My son is cooking an evening meal for us before we travel home so will be full and relaxed. I am taking extra pred and metformin. Sounds daft but it's a just in case, like if we can't get back for some reason and need to stay over I will have my meds. You never know do you, the train could break down or anything.

[Annodomini]

Very wise, Sue. I take a whole pharmacy with me when I travel! 'just in case'.

[HelenJC]

Sue, the puppy is gorgeous! I hope you enjoy him when he arrives. I have an elderly spaniel I inherited from my son (she didn't like the baby) and even when things were at their worsed I managed to stagger a few steps each day to take her out, even if my husband then had to leave me to actually give Molly a walk!

As far as jelly legs are concerned, I suffer from that too, and thought it must be the PMR. My jelly brain has receded now I am down to 17.5mg but I could fall over a feather! Think perhaps I should get a folding stick too as we are off to Italy on Saturday, (with the caravan) and would like people to realise there is a reason for why I stand around watching hubby doing all the work!

[Sue8 in reply to HelenJC]

ooo enjoy Italy, my eldest went there for his honeymoon 2 yrs ago. My daughter in law is American and catholic and they visited vatican city. I was so against a walking stick but I will feel safer knowing I have a little support. I am going to London with my mum who is only 69 but runs rings around me even after 2 new knees lol. She even took me to buy my new stick. I think she also gets upset that I am in so much pain sometimes, the diabetes diagnosis in March got her more upset than me then the PMR..

[corralie]

Hello Sue8

What is Naproxen? Sounds good. Have had real problems coming down. Went too quickly and ended up with a two month flare up! I so want to come off these steriods. I'm not a very patient person.

[Sue8 in reply to corralie]

Naproxen is an anti-inflammatory painkiller. It is like ibruprofen but non steroid based. You are only allowed 2 a day but yes they are good and really helped me in my last reduction. I also take Lansoprazole to prevent stomach ulcers as long term anti-inflammatories can cause them

[corralie]

Thanks Sue8, I'll ask my doctor if they'll help.

[Lidybeff]

Just a little note to any of you that have had GCA and are reducing prednisone.. have a talk to your doctor about daily low dose aspirin ( enteric coated to protect your tummy). It keeps your blood thin and flowing through the swollen blood vessels. A good insurance policy if you get your doctor's ok first. Lizzie.