Hello I am IanR I am new here. I have been on 40m... - PMRGCAuk

PMRGCAuk

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Hello I am IanR I am new here. I have been on 40mg preds for a month. I was diagnosed with gca last Thursday

ianR profile image
ianR
7 Replies

I had a flare up yesterday . I rang the pmrgca helpline and spoke with Jennifer we agreed I should go to A+E the Dr there increased preds from 40to50 for yesterday and today and told me to visit my Gp mid week. Is there anything I can do myself to improve things(eg. Rest exercse ect) Your ideas would be very welcome IanR.

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ianR
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7 Replies
polkadotcom profile image
polkadotcom

It's going to be a longer term thing, Ian, i.e. more than a couple of weeks. That was a very sensible A & E doctor you spoke to, so hope your GP feels the same.

If you've spoken to Jennifer, you couldn't ask for anyone better. We answer the phone on a rota, so you can just call again if you want any further support.

As for rest/exercise - a lot of the first and a little of the second. For myself I do what I call 'pottering'. I potter in the kitchen, the garden and potter off out for a little walk sometimes.

After each job I have a little rest which sometimes turns into a long nap!

The idea is to keep moving, but gently; don't overdo it, GCA bites back as you have found.

Take care.

Zacsmimi profile image
Zacsmimi in reply topolkadotcom

In the states we call it "puttering". 😉

ritter profile image
ritter

Hi IanR.I was diagnosed with GCA 15 months ago started off on 60mg,s preds but unfortunately for me I am still on 30mg.s not good as the side effects are out of this world.good advice to take it slow and try not to use up all of your energy when you have some.but you do need to get a bit of excise I find walking is the best for me and I do have 2 sheep dogs so that fits in well with them..be pr repaired for a long and lasting illness and if you get away with anything less you will be very lucky, good luck and stsy on the forum its a brilliant place and is a wealth of experience,kind regards Anne (ritter)

ianR profile image
ianR

Thank you for your replys i am begining to understand the extent of this thing . Must stay possitive and try to beat the beasts of pmr and gca !!!!!!!!!!

Dovelady profile image
Dovelady

Hi Ian, I too am fairly new to the PMR GCA thing and having been started on high doses of Pred am trying to reduce, all the advice given is the right advice. I have found the mantra Keep Calm and Carry on and take it easy to be the best. Do less than you think you can but do keep moving, it would be very easy to just sit and wallow. I am not letting this thing beat me despite some of the side effects of the Devils Drug really getting to me. That said after having my Pred at 6 am today I had breakfast in bed and just fell back asleep Until just now. For today, like Polkadot I shall just potter.

2watsons profile image
2watsons

i t is a year since i found had GCR now on 7mg pedisolone started on 50mg i was on of unlucky ones lost use of one eye , so keep smiling it is a slow process ,but with taking each day and resting when feel need it will get better ,i now have lots of very good day .good luck

sara4 profile image
sara4

Hello Ian, I am hopefully near the end of my pmr/gca journey. I took acutely il with gca nearly 2 years ago, and on reducing the pred dose, pmr joined in. I started on 40mg, and initially had a steroid high, felt and looked quite bright despite insommnia. Had a couple of flares along the way, but now on 2mg, which seems ridiculously low!! I remember being horrified when I was told to take 8 x 5mg tabs, and you are on 10!! I agree with all the above, just listen to your body and beware of doing too much on your 'good' days, balance the rest and excercise. enjoy the summer. if we get any. Hopefully you will have a straightforward journey now you are the correct dose for your symptoms.....keep slow and steady when you start reducing again. Good luck

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