Hello everyone, I am new here, I am 3 weeks into ... - PMRGCAuk

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Hello everyone, I am new here, I am 3 weeks into Pred

Jo1947 profile image
22 Replies

Hi everyone, 1st post, 3 weeks into diagnosis and start of Pred (learned the jargon very quickly) I have a docs app on Friday, I am expecting him to reduce to 12.5, tabs for calcium and vit D. Is this what I should expect? I think I started last year with hip problems, thought I was needing hip replacement, then fell on my back in June this year and the pain in right arm started, not long afterwards left arm. Thought it was all to do with that, anyway doc took a pot shot with blood test and then this unheard of illness. Hey I am free from pain at the moment but steroids leave you with lots of feelings, don’t think this is going to be as simple as I thought.

Thank you for listening to my story

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Jo1947 profile image
Jo1947
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22 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Jo,

And welcome.

Doc may well reduce you, but some leave you at starting dose for a bit longer. Ask him for a prescription for 1mg tablets as well. 15mg to 12.5mg is a recognised reduction, but some find it too much, so it’s good to have the option to make a smaller drop if necessary.

Also have a look at attached, and come back at any time with questions etc,

healthunlocked.com/pmrgcauk...

Take care.

Jo1947 profile image
Jo1947 in reply toDorsetLady

Thank you Dorset lady, very helpful info, I know I shouldn’t but am having a gin and tonic as I am fed up being good!

PMRpro profile image
PMRproAmbassador in reply toJo1947

Why shouldn't you?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toJo1947

Nothing wrong with that!

CT-5012 profile image
CT-5012 in reply toDorsetLady

Welcome,

G&T is being good isn't it? 😁

PMRpro profile image
PMRproAmbassador

Welcome - I think you have probably learned the most difficult lesson already: "don’t think this is going to be as simple as I thought"

But just take one step at a time - and don't try to look ahead and plan a reduction journey.

Jo1947 profile image
Jo1947 in reply toPMRpro

Thank you PMR pro, don’t tell me off about the GnT

PMRpro profile image
PMRproAmbassador in reply toJo1947

That is the last thing I'm going to do. I only do G&T with diet tonic, which doesn't exist here in Italy! Otherwise I'd join you. As it is - a nice glass of Gruner Veltliner is in my hand!

Jo1947 profile image
Jo1947 in reply toPMRpro

Havnt tried that but it sounds very nice- cheers

Rokerman profile image
Rokerman in reply toJo1947

Or you could try gin with regular tonic plus a shot of elderflower cordial.....

Always works for me!

Alison300356 profile image
Alison300356 in reply toRokerman

Rhubarb Gin and ginger ale!

PMRpro profile image
PMRproAmbassador in reply toRokerman

I hate the taste of regular tonic ...

Alison300356 profile image
Alison300356 in reply toPMRpro

Me to but ginger ale is good in any gin!

SheffieldJane profile image
SheffieldJane

They are off! 🤗🍷

Welcome Jo!

Lesson 1. Patience

Lesson 2. Pace yourself

Lesson 3. Taper slowly

Above all have a laugh whenever you can!

Jo1947 profile image
Jo1947 in reply toSheffieldJane

Jane have seen your earlier post and can only offer you my support and care at this time, you were so kind in your response to me, I hope for a quick resolution for you, take care

CT-5012 profile image
CT-5012

Accept all the help you are offered and the drinks of course. 🥃 😁

Hirwaen profile image
Hirwaen

Welcome, your description of the lead up to diagnosis is exactly the same as mine, blaming falls etc for pain!! I started in April on 20mgs and am now down to 9mgs. Be positive, this is manageable and not life threatening, there are great experts on this site so you never feel alone. Good luck!!

Jo1947 profile image
Jo1947 in reply toHirwaen

Hi Hirwaen, thanks for your welcome, it sounds like you have had a good reduction in your meds, I am trying to be positive but sometimes it feels a bit overwhelming. Thank you

Alison300356 profile image
Alison300356

Hi Jo I'm new to this too. Two weeks in from diagnosis and after finding out about various symptoms I too think I've had PMR for a while. Looks like it's going to be a learning curve for us!

Jo1947 profile image
Jo1947

Alison, hopefully as we are on the path at the same time we can support each other.

I hope all can see this post as I want to thank all for support but am so tired tonight to respond to all, there must be an easy way to do this but have yet to learn, thank you all

ali5son profile image
ali5son

Welcome Jo

New to all this also diagnosed June. Giving steroids and not much information about PMR. So far so good but so grateful to this forum for information.

Jo1947 profile image
Jo1947

Hello everyone who responded to my initial post, thank you, I have felt tired and have not managed to respond to you all individually. Tomorrow I see my doctor for the first time since he issued me with my prescription, I have an ever growing list of questions for him, lets see if he knows his stuff! The information I have found on this forum is so helpful.

it is so awful to read of the struggle for some on here, I wish the best of luck and hope they take courage and help from all of you who have responded.

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