New PMR member : Hi all Just been diagnosed with... - PMRGCAuk

PMRGCAuk

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New PMR member

Ro55ifumi profile image
12 Replies

Hi all

Just been diagnosed with Polymayalgoa Rhumatic and started on 10mg of Pred

3days in and wondering how long before it kicks in in full. I take in the morning as well as vit d

Hopefully pick up some good information in here

John

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Ro55ifumi profile image
Ro55ifumi
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12 Replies
SheffieldJane profile image
SheffieldJane

Hi John and welcome to the site. I hope you find it as supportive and informative as I have. Pred varies in the time it takes to kick in, from a matter of hours to a couple of weeks. Your start dose is modest mine was 20 mgs. You may need more in the end to settle the inflammation. Usual start doses are 15 mgs - 25 mgs. I obtained the Pred “ miracle” within 2 days. Others will be along - predominantly Brits. In the morning.

fmkkm profile image
fmkkm

Hi there,

It may not be working because it’s not enough. I have GCA but one of the PMR experts will be along with an opinion.

Welcome to PMR/GCA!!

fm

Hi John, welcome. I agree that your dose may not be high enough. The usual starting dose is 15 to 25mgs of pred so 10mgs is neither here or there for most people. You need to ask the Dr to increase the dose although it can take a week of two to kick in for some. You are looking for around 70% global improvement. Unlikely until you get s good wallop of a starting dose. Once you are up and running on 15mg then try and adjust your diet to low carb. That will manage the potential for weight gain and will counteract the random spikes of glucose caused by the pred.

The pred and vitd3 should be taken seperately. The vitd can stop certain drugs working effectively. We often say pred for breakfast, vitd for lunch and tea.

I going to link you to a post from yesterday as PMRpro's explanation of PMR and pred should help you.

In the meantime, take the pred as early as possible to give it the best chance of helping but please get that dose raised.

healthunlocked.com/pmrgcauk...

Arflane97G profile image
Arflane97G

I started at 15 mg and would say that it took 4 / 5 days to kick in and to give 80 / 90 % relief. Some people may have different experiences but that was an incredible improvement for me and gave me my life back. It is a long haul though!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi John,

Welcome, as others have said 10mg is a low starting dose - do you know why you were started at that dose?

This may give you some more info - it’s a bit long, but please stick with it -

healthunlocked.com/pmrgcauk...

PMRpro profile image
PMRproAmbassador

You say "before it kicks in in full" - have you had any improvement with 10mg? It is a very low starting dose, especially for a man - size does matter here!

Ro55ifumi profile image
Ro55ifumi

Thanks all for the info so far, I work nights in the Pharmaceutical distribution industry, so busy at present, I definitely struggle after 0200 am, I tend to take the tablets around 0700am when home after breakfast.

I am a keen cyclist and ride 10 - 15 hours a week, does this now become do able??

Or is it a case of spreading this through the week??

Cycling is my way of managing my mindset.

I will contact my GP Friday and ask about my dosage, as you say it looks like I am in it for the long haul

The 10mg has helped the first 2 days but then as above whilst working

PMRpro profile image
PMRproAmbassador in reply to Ro55ifumi

Not 10-15 hours straight off - try 1/4 an hour the first time and see how you feel next morning if you can manage it. Then if that was OK build up slowly, adding maybe 5-10mins each time and always allow a day off between to reassess - I'm assuming you do 1 1/2 to 2 hours at a time usually? Eventually you will feel it next day - go back to the previous time and then "train" using that for a couple of weeks before adding 10 mins again to see if that is now possible. You'll be surprised how quickly the time will build up but this way you shouldn't end up with really bad DOMS that then takes weeks to resolve which is always a risk.

The pred deals with the inflammation once it has got the full chance to. But it doesn't do anything about the underlying autoimmune disorder that causes it. That continues to chug away in the background, attacking the muscles and leaving them intolerant of acute exercise. The post-exercise sore muscles will be worse than you expect and there are experts who think it can cause a flare!

If you are working, especially at a relatively physical job, you do often need a bit more pred than someone who isn't. Only you can tell. The timing for you may also be a bit different if you work permanent shifts? The other question is whether the anti-inflammatory effect is lasting the full 24 hours between doses for you - it can be anything between 12 and 36 hours. For some people it works better to split the dose, usually about 2/3 and 1/3 to extend the time but everyone is a bit different. That could be why you are feeling it about 2am.

yorkieme profile image
yorkieme

I can't help you regarding PMR or dosage levels as I am pretty new to this site myself and rather inexperienced,however I can vouch for the very helpful advice that I am receiving on here.I have spent the best part of four months raging against steroids,PMR,G.P.'s and just about anyone and anything that crossed my path.

We have different sports,mine ex rugby but until recently still a very active life for my wife and I here on the edge of Snowdonia but I also rage at losing that. Until late I have struggled with getting up one flight of stairs.

So,my lesson has been to start again,(I also screwed up messing around with my pred' dosage by the way because of course I believed I knew better,) and I have started by looking at my attitude to PMR thanks to those on here who take the time to advise.

The only bit of advice I can give is treat the whole thing as a new education,I am doing .................... now.

Maisiek profile image
Maisiek

Welcome- you’ve come to the right place for advice- I was started on 15mg too and experienced complete relief- until I tried to cut down too soon. I found KAte Gilbert’s book PM and GCA really helpful ; it’s on Amazon. Get the latest edition .

paulst955 profile image
paulst955

You need a new doctor 10mg is not enough to start treatment get a second option or best bet a new doctor or you will be in pain for a long time.

MiloCollie profile image
MiloCollie

HiI haven't been officially diagnosed yet but started on 15mg last week. I'd say it took 4 days to kick in - muscles lots better already.

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