Too much pred?

[Cobnut]

I'm wondering if any one out there can tell me what happens if you are taking a higher dose of pred than your body needs. I have had GCA for almost four years and have been stuck on 7mg for a year. Usually when I try to reduce however slowly I get a lot of pain everywhere but I am now trying again by taking 6mg two days a week. I now find that on days when I take 7mg I feel very fatigued one hour after taking my medication after breakfast which continues all day until I have a nap. I'm just wondering if my adrenal glands have woken up and my body might be ready to reduce to 6mg every day. What a problem it is knowing which way to go if you have to rely on your symptoms coming back to decide. Any advice would be gladly received.

[Hidden]

Hi Cobnut,

You are at the ‘magical’ Physiological Dose 7/7.5mg when ideally the old Adrenal Glands should be waking up 🤞🏻 It’s surprising you feel more fatigued when you take the 7mg rather than 6mg

However, l would suggest you drop by 0.5mg now & try one of the slow tapering plans as often discussed on this group.

If we have ‘too much Pred’ we are more likely to feel generally better & brighter.

Good Luck 🍀 with your Taper

Kind Regards

MrsN

[DorsetLady PMRGCAuk volunteer]

If you are just suffering from fatigue, then from personal experience, I would blame the adrenals.

Only way through, so long as no GCA symptoms, slow taper as below, 0.5mg a time ...and patience!

healthunlocked.com/pmrgcauk...

Good luck.

[Cobnut in reply to DorsetLady]

Yes I guessed 1mg twice a week was too much and will do as you have so often suggested. It is so difficult to get past 7mg and so tempting to stay there. Thanks to both of you for replying. I will plod on.

[DorsetLady PMRGCAuk volunteer in reply to Cobnut]

Img sounds like nothing doesn’t it? And it isn’t when you’re talking about medication in the twenties or even high teens - but it is once you get to single figures. Even 0.5mg is too much sometimes!

We’ve all been there, and as I said the only way is slowly. It may be frustrating, I know, but that’s the way it is.

There is nothing to say you can’t stay at 7mg a bit longer, but one day you will have to reduce - so just try and do it the easiest way you can.

Take care

[bunnymom in reply to Cobnut]

Plodding is exactly the perfect word. 😣

[SnazzyD]

7-5mg was a real grind for me. I felt terrible physically and emotionally but no GCA so I toughed it out doing the DSNS with 0.5mg drops. Things got much better at 5mg. However, I’m at 2.5 nearly 2mg and it’s not great again. What I would say, that like you it kicks in about when I go back to the upper dose the next day which I suspect is because the blood level is rock bottom until the old dose kicks in.

[bunnymom in reply to SnazzyD]

I wonder why this is? Is the PMR riding and falling or is it all the adrenal glands? Early days I thought lower dose meant easier life. Now I know better. So glad I retired so that I can manage all of this without the stress of being responsible for other things than myself.

[SnazzyD in reply to bunnymom]

I know, when I first started with GCA I thought I’d be back to work after 10mg because the doc said I’d feel human again. Sigh, how we laugh now.

[bunnymom in reply to SnazzyD]

My Dr said with pred you'll be good as new in two years. Haha

[SnazzyD in reply to bunnymom]

So, does this mean that we are the unrepresentative few and they see countless spring lambs bouncing out of their office on the second anniversary? I’d love to know.

[Hidden in reply to SnazzyD]

😂😂😂

[bunnymom in reply to SnazzyD]

After my third year and I mentioned 5.9 year average, he confessed to only 25% of people being done in two years. He said he was trying to be optimistic. I felt after all I learned here it was really a lie. After two years I decided I was in this for the long haul so made different life choices. Even off pred I am assuming another year to fully recover. Maybe I couldn't have faced that all at the beginning. Certainly is life changing.

[Hidden in reply to bunnymom]

If you know the facts you can adjust your life from tbe start. But i do think it can be disheartening too. EVERYTHING i have learned and done for self-care thus far has come from this forum, and by looking at research papers and meta-analyses.

[Hidden in reply to bunnymom]

My dr said at least 2 years so a little bit more realistic than some, who based on their reduction plans think 15mths max. Basically its done with you when its done with you.

[bunnymom in reply to Hidden]

I agree absolutely.