hi I have g.c.a. and am on prednisolone was on 60mg. but now reduceing every month now on 20mg,1 july will go down til 15mg.i get very worry

[Flosy]

at nite I lie in bed with all different things going on in my head. can someone give some advice please.thank you.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

High doses of Pred can make you agitated, and sleepless so maybe speak to doctor and see what he suggests to help with both those issues.

If you tell us exactly what you’re worrying about we can probably help - I expect many have been through the same.

In the meantime have a read through this - it might answer some of the things you are thinking about -

healthunlocked.com/pmrgcauk...

Just another thing- you may need to ease up on your tapering soon - you are shortly going to get to the point where you drop below the dose you actually need.

What instructions have you been given other than reduce 5mg every month?

[Devoid]

Hi I found a 5 mg drop below 20 mg difficult so I split it and did 2.5 at a time, still going down by 5 mg per month

[PMRpro Ambassador in reply to Devoid]

You do know that is predictive of a flare????? Reductions shouldn't be more than 10% of the current dose ...

[ParsnipSoup in reply to Devoid]

My Consultant took me down 2.5mg each taper, 5mg is a large drop.

[PMRpro Ambassador in reply to ParsnipSoup]

2.5mg is a large drop when you get to 10mg and below!

[ParsnipSoup in reply to PMRpro]

I went to 7.5 , 6, 5.5, 5mg. Now tapering slowly , 5mg x 6 days 4mg on 7th day, following week 5mg x5days 4mg for 2days and so on .

[Grammy80]

You have already heard from the gals I consider the most seasoned and wisest regarding GCA and the tapering of steroids.

First of all~!!! I'm so glad you are here. I have GCA also and was diagnosed last August. This forum helped to make me understand that the craziness I felt was a normal part of the process. I'm a different person now than last year. You don't need to go through this journey alone.

When I began to taper, my rheumatologist in the states was having me drop my fairly large amounts and my body did not appreciate it. I am now tapering slowly the way they do in the UK and it has made such a positive difference.

Stay with us and we shall stay with you...this forum is a lifesaver~!💖

No question is a silly question~!!!

[Flosy in reply to Grammy80]

thank you.

[Grammy80 in reply to Flosy]

I'm just so glad you are here, Flosys! 💖

[Daffodilia]

When on high dose of pred I used Tropics Lavender Pillow Spray and Temple Balm and always do 30 mins relaxation during day

[Flosy in reply to Daffodilia]

hi,does the pillow mist work.

[Blossom20]

Hallo Flosys, sorry to hear you are so worried. It's only natural when you have something like this but try to accept that you have it and that you are doing everything right now with the medication.

This forum is wonderful and everyone is so helpful. Just ask and people will help you.

I am very new myself and still learning.

[Flosy in reply to Blossom20]

thanks to everyone that replyed.

[sandydame in reply to Flosy]

I am so sorry for the fear that you are experiencing you have heard from all others it is normal. I will pray for you for more peaceful nights. I have been helped by listening to, at night, on my Chromebook or on my phone on the bed near me to a YouTube called ABIDE. There are many different versions some are the Psalms some are called talk down which are very relaxing and comforting and they will end but others will continue through the night after I have fallen asleep. I am 80 years old had PMR for 6 years and am on continually 6 mg of prednisone and I've had a number of flares that are quite scary. On nights when I am particularly bothered I always listen to abide and it's always helps. The sound of a quiet voice and the words spoken never fail to comfort me and I feel so much less alone. I am also so very thankful for this site which has answered my questions and often comforted me because everyone understands what it is like to deal with PMR. If you do not have abide or cannot time this in to YouTube where you are then I hope that you will have similar talks and videos. When using a video on YouTube you can just lower the light on your computer or phone all the way down or for the first couple of minutes look at the beautiful scenes that are portrayed and then lower the light from the screen. May you find peaceful spero and may your fears all become calmed as you care for yourself. You are not alone.

[Jackoh]

Glad you found us Flosys. Sometimes it’s so good to share and then you don’t feel on your own. Always ask- there is usually someone else who has experienced the same or someone who can give advice.

[Skysey]

Hi Flosys.

I too have a diagnosis of GCA. As everyone on this forum has already said, we are here for you to offer support and advice.

When I was on a high dose of prednisolone, I was feeling worried, scared and sometimes felt a real sense of dread. Things do improve. You are doing the right thing, taking your medication and sharing your worries on this forum.

Look after yourself.

[Flosy]

hi does anyone out there know if you every can go back to work with this gca, I have lower my dose today from 20mg til 15mg. thank you.

[PMRpro Ambassador in reply to Flosy]

Does tend to depend what you do - both GCA and pred don't improve cognitive function at times, nor do they improve dealing with idiots And if you have trouble with fatigue that may get in the way.

It might be better to post a new thread - more people will see the question that way.

[Flosy]

hi,thank you. I work in care home, in Salisbury.i was put off work in march,when I saw my drs. he said for 3 months,that is finished at the end off june,am waiting for a phone from the hosp[tal that saw me back in march,