Background : Background 53 year old female work... - PMRGCAuk

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Walkingwiththewin profile image

Background

53 year old female work all the time. I woke up Saturday morning Oct 5th couldn’t get out of bed extreme pain in both arms and pelvis and upper thighs. My husband helped me out of bed I took a hot shower could not even dry myself off without tears falling down my face. As the day went on the pain and stiffness got better. Sunday morning I woke up in more pain and went to the emergency room. They did all kinds of lab work and came back to say most of my inflammatory markers were high. Than came and showed me a print out of PMR and asked if that was my symptoms. It described me perfectly. He put me on 40mg of prednisone and told me to see my PCP

The prednisone differently helps but takes most of the day to kick in I take it around 8am

I get out of bed by 6 and am usually at work by 7:30am

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Walkingwiththewin
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HeronNS profile image
HeronNS

You can put this into your profile. If I were you I would do that. You can add as much information as you like and also have an option as to how much you want to make public and how much to keep private. It's best to put your information in like this so that it is always accessible. This post will rapidly disappear down the list and not be available to people who might want to know your story so they can answer your questions more usefully. Cheers!

SnazzyD profile image
SnazzyD

Hi, it’s a real shock when this hits out of the blue when you don’t have time for it. I was 54 when GCA came calling. What was explained to you about what is happening, the disease process and what the Pred’s role is?

HeronNS profile image
HeronNS

You definitely need to see your own doctor because there are a few tests that should be done to make sure it is PMR and not something else with PMR-type symptoms. This is called differential diagnosis. If you are finding this high dose of pred is taking all day to kick in this is especially important. One of the diagnostic tools to confirm PMR includes a good response to pred, usually a dose like 15 or 20 mg, usually within a week, sometimes less, sometimes a little more.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As I said in other post - 40mg is high dose for PMR - so you should be getting better relief than you are.

Would suggest, as others have said you have something else going on, or because you are still working you are not giving the Pred chance to work.

It’s not a case of take the meds and then carry on as normal - PMR doesn’t work like that - in fact the Pred only works on the inflammation caused by the illness - it does nothing for the illness itself - so that is still causing issues which you need to address.

Have a read if this, it may help you understand your illness (if it is just PMR) a little better- but long winded, but stick with it -

healthunlocked.com/pmrgcauk...

I guess I am able to get out of bed on my own. But let me tell you in the evenings I feel

Like I can run circles around everyone. The morning I am weak and stiff. I go to the doctor on the 23rd. So I am trying to still work as much as possible. I have never really been ill. So just trying to figure all this out.

SheffieldJane profile image
SheffieldJane

That is a high start dose for PMR - more usually it is 25 mgs to 15 mgs. I would expect at least 70% relief within 2 weeks if not more. Please be alert for GCA symptoms ie double vision, Temple pain, jaw and or tongue pain while chewing. I hope you get remarkable relief soon!

Just read your post above and wondered if you would benefit from taking Pred at around 2am? That would head the “ shedding of inflammatory substance” off at the pass and after another sleep your mornings may improve significantly - it works for some.

Just another thought, a friend of mine did not get pain relief until she stopped taking Statins. This may or may not apply to you.

Walkingwiththewin profile image
Walkingwiththewin in reply to SheffieldJane

Thank you so much for your insight. I really appreciate it

PMRpro profile image
PMRproAmbassador

Why don't you try taking at at 6am as soon as you wake up? Earlier if possible. 8am would be the time to take it for short term use - not for optimum management of PMR which is a chronic illness.

The inflammatory substances are shed in the body at between 4 and 4.30am - the longer you wait before taking the pred, the more inflammation has been created and the more work it has to do. The optimum time to take pred to minimise morning stiffness is 2am so the blood level is at its peak at 4am.

The other point is that it is very likely that you are trying to do too much physically - the actual disease process continues to chug along in the background, your immune ssytem is unable to recognise your body as "self" and is attacking body tissues as if they were invading organisms like viruses. This makes the muscles intolerant of acute exercise - and it is a bit like trying to go to work in the middle of proper flu (as opposed to a cold).

However - you do probably need your PCP to make sure there is nothing else going on which could be causing the symptoms although I imagine the ED ruled out some of the causes and the inflammatory markers wouldn't be raised in others. Once the PMR diagnosis is sorted and it is fairly certain there is no sign of GCA, you could try varying the dosing. All at once earlier in the day would be fine even for GCA. But some people find they can take it before bed without it disturbing their sleep and that brings the bouncy period forward to a more useful time than the evening!

Less than a week is still early days, even on 40mg for PMR and you may find things improve suddenly in a few days. But we have to ask - what are ALL your symptoms?

DianeA1 profile image
DianeA1

Hi, you have received great info already. I just wanted to say I take my dose wi unsweetened applesauce at 2am to get ahead of the cytokines and get up at 5:30am ready to take on the day. We are all different though, and I am one who can fall back to sleep easily. All the best as you gain more knowledge about this.

HeronNS profile image
HeronNS

Just be careful, no matter what time of day or night you take your pred please remember to have some food with it. Some people take middle of the night or wee small hours doses with a small cup of yoghurt, some one said half a banana, whatever is easy for you and won't wake you up too much, to line your stomach.

bunnymom profile image
bunnymom

Also get yourself a rice packet that you can microwave. As large as possible. You can use it on your hips, around neck etc after you get up. It's very comforting. I'm sitting here with mine right now. It really helps with pain and stiffness. Mine is a type that drapes over my shoulders.

whitefishbay profile image
whitefishbay

sounds familiar.

kulina profile image
kulina

I too was 53 when I got PMR and I couldn't work like I used to, all the time. I was never on 40 mg Pred. My doctor started me on 20 mg and it took about 2-3 weeks to feel 80% better. After that I always divided my dose , a higher dose at 4 am and a lower dose right before going to bed. When I took the dose all at once, around 8 am, I didn't feel a difference until noon or so. It took too long to kick in and I was stiff. I agree with everyone here, who are very helpful. You will learn a lot about this condition.

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