Update : Have succumbed to steroids got to speak to... - PMRGCAuk

PMRGCAuk

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Update

diduck profile image
17 Replies

Have succumbed to steroids got to speak to dr again this week to see if working , they are a little bit was hoping to reduce this week but will see what dr says

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diduck
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17 Replies
HeronNS profile image
HeronNS

How long have you been on the steroids? You need to stay at your initial dose for about four weeks (at least). If they are not working to ease your symptoms at least 70% after a week I'd say the dose is too low. Or, possibly, the diagnosis needs to be reconsidered. If you've had PMR before, as you indicated in an earlier post, you know it's a diagnosis of exclusion, usually finally confirmed by a good to excellent response within a few days to a moderate dose of pred. And symptoms always trump blood tests.

diduck profile image
diduck in reply to HeronNS

Blood tests never been an option , I have managed to get some sleep which is a great improvement., I would say I have had 50% improvement and been on them 6 days , dr says to discuss tomorrow , I will not go back to a rheumatologist as last time I went for 3 years and they did but do a thing so will now only deal with dr

Fingers crossed

HeronNS profile image
HeronNS in reply to diduck

Sorry, I misunderstood. When you said you were going to talk to the dr to find out if the meds were working I thought you meant you'd be getting blood tests. Only you know if they are working!

And I hope they are. All the best.

SnazzyD profile image
SnazzyD in reply to diduck

What dose are you on?

diduck profile image
diduck in reply to SnazzyD

15 to start with

SnazzyD profile image
SnazzyD in reply to diduck

Perhaps you need a bit more as things have gone on a bit and 15mg is on the low end of starting dose. Good luck with the doc.

diduck profile image
diduck

Thank you

jinasc profile image
jinasc in reply to diduck

At least, as another Lady said on her second time around, "it is different but I now know more and what to do". Hopefully you will manage better this time around.

diduck profile image
diduck in reply to jinasc

Yes hopefully but I looked awful last time with moon face etc I was trying so hard to avoid but couldn’t carry on with the pain at night I was getting no sleep

jinasc profile image
jinasc in reply to diduck

I missed my Moonface when it went, as all my wrinkles disappeared. With a bit of luck and a fair wind you may not get it this time.

And if you wear a mandatory 😷 who knows - sometimes there is an upside to a disaster. 😉😉

diduck profile image
diduck in reply to jinasc

Ha ha yes I can see that lol

Fingers crossed as took 4 years last time to get off them😞

Viv54 profile image
Viv54 in reply to jinasc

Hi jinasc, im the lady second time around , yes i think the mask idea is great ! Have a good day. Viv x

jinasc profile image
jinasc in reply to Viv54

Now I can add another one to the figure I already have 😊

SnazzyD profile image
SnazzyD in reply to diduck

Keep the carbs and salt low to help with the all round blob effect. Salt made my face 10 times worse.

Sheilamac profile image
Sheilamac in reply to diduck

Get quickly on to a low carb diet. It will make a difference

SheffieldJane profile image
SheffieldJane

The only thing that is succumbing to Pred is the horrible disease. You can get more than 50% relief, I expect a start dose of 20 mgs will give you the bounce you deserve. You manage the disease this time and introduce all the actions to head off the dreaded side effects. There are much worse autoimmune diseases out there, with this one we stand a fighting chance and as others have said, we hopefully, protect ourselves from a much worse scenario ( GCA, LV). On your side!! 🌻

Noosat profile image
Noosat

When I was diagnosed on December 12, 2018, I started on 40mg for 3 days and then on to 20 mg. After that it was left to me to decide on reductions. Now ,going very carefully, 1mg at a time then 1/2 mg after 9mg. level, I am down to 3mg a day. I know we are all different, this is just my experience so far.

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