I really dont understand pmr illness

It is very unusual for "other" painkillers to have any effect in PMR, or if they do, it is only minimal. Pred is the painkiller - because it combats the thing that causes the pain, the inflammation. It does nothing about the underlying cause of the problem, only time will do that.

But I want to tell you - you WILL get back into the clothes you used to wear! I didn't throw away clothes and I fought buying new larger ones. Shortly before my daughter's wedding I finally bought some - within weeks I started to lose the midriff fat as I cut carbs drastically. I finally managed to lose about 36lb, all of which was due to PMR (lots put on due to inactivity in 5 years without pred) and Medrol. I've put a bit back on this summer - time for a concerted effort to get back down again. But the clothes that were in the wardrobe? Back out again.

Why would anyone jump on you about using CRP as a measurement tool? For the people for whom it mirrors their symptoms it is a gift - even your average GP doesn't argue with a rising CRP!

It has been my experience that when I'm not feeling well, it is always confirmed in my blood work; CRP and SED rate show an increase.  I have, on occasion, taken Advil if I feel leg aches during the night, and it has helped.  I try so desperately not to rush to increase my dose of Medrol unless I find that the pain is not subsiding.  Then I will increase to avoid an all out flare up.  But I only go back to the last dosage of when the pain was in check.  After dealing with PMR since June 2014, I think I have finally learned (after many mistakes) how to deal with it.  I'm still grateful and happy to report that I have now been at 1 1/2 mg for almost 2 weeks and, so far, I'm doing okay.  I'm beginning to feel more confident that the daily intake of Tumeric has helped.  I am desperately trying to lose the extra pounds around my midriff which PMR left me with as well as the puffiness around my neck (though it's much better than it was when I was on the higher dose of Medrol).  Patience; that's what it's all about and a determination not to give in to this disease that has befallen so many of us.  This forum is a great source of information and encouragement.

Don't know what he's trying to achieve either - except a flare in symptoms if it is PMR! If you are improving on 10mg be grateful but do take advantage of having someone to give you some more as it will take longer than a higher dose to sort things out inititally.

For some reason the keyboard my phone freezes and this is the third time I'm writing this post. Please excuse me if all three version show up somewhere on better!

After taking the second dosis of 10mg.I feel100% but you are absolutely right that it won't be enough to keep109% all day as this morning I woke up sore and stiff until I OK the the predisone this morning.

What has developed now though, is that I feel like my glasses are foggy on one spot all the time and the constant headache I've had for about a month have subsided but one I do feel a mild, diffuse pain although no longer constant .

I have an appointment with an Ophtalmolgist on Monday. I will go to the ER if my eye gets worse over the weekend.

What would you advise?

I have" fired" the Reumatologist, and have had to hold off emancipation from my husband ..lol.. temporarily until I find a new GP and Reumatoligist .

Thank you so much for your input. since May, when I got ill , I have been made to feel like a drama queen. Finally I'm getting to the bottom of this.

BTW, just to give you an example of how behind the times they are here in Spain, a fact I attribute to their general lack of English, I bought some vitamin D3 today at the pharmacy as I am out and waiting on Amazon to send me some. On the insert of 20,000iu oil vials, it says that the recommended dosis for people over 65 us 200iu a day !!! I'm very deficient in vitamin D and the reumatoligist I fired didn't even mention it.

No, just once! And who cares about typos when on a phone - as long as they aren't too confusing (like morality and mortality...)

I have the same foggy spot on one eye - my wonderful Scottish optician identified it as a floater (must have been enormous!) and at higher doses of pred it eventually disappeared. It has returned a bit but not as bad as it was. Screwing up my eyes does make it move/clear. That comforts me.

Every morning the body sheds a new dollop of cytokines, about 4.30am - the longer you leave them un-attacked the more inflammation they will create. The sooner you can take the pred after that time the better as then they have done less damage -  the ideal is at 2am apparently for non-coated pred and there are people who get up and take it then having set an alarm. The next best alternative is to take it early, say 2 hours before you want to get up, and settle down for another couple of hours while you absorb the pred and it gets to work which takes from 40min to 2 hours depending n the person. Then if you are lucky it will last until you get to bed and allow you to do some exercise - which does tend to help the stiffness. I found aquaerobics in a warm pool in the morning was an ideal way to be able to move for the day, even without pred. Alternatively, stretches in a warm shower after having used an electric blanket BEFORE getting out of bed helped some people.

If the 10mg is working - whoopee! It will take a bit to clear out the existing inflammation so you may find things improve further. But just because you feel so much better DO NOT OVERDO THINGS! The pred is managing the symptoms not the illness and your muscles remain intolerant of acute exercise. If you do too much you will feel as if you have run 10km without training - and it will hurt! Gently does it - and walking is good. 

Vit D - how low are you? If you are very deficient, you're fine to take up to the equivalent of 60,000 IU a week for  8 weeks - there is a high dose version made in Germany which makes it easier if you can get it. I suppose the Spanish probably assume that no-one becomes deficient in the Land of Sol - I live in northern Italy and about 80% of the locals are thought to be deficient despite the fact we live at the latitude you can make vit D in skin all year round! But we don't go out in the sun in the middle of the day and only tourists sunbathe! 

Did you say where in Spain you are? I can't remember...

WOW! Thank you so much for your advice. I can't begin to tell you how helpful they are.

I have insomnia lately, ever since I started with the symptoms last May, from which time I have been practically sofa- bound watching the US presidential elections (OMG!!!) till the wee hours so for now I don't need to set an alarm and will take my dosis before going to bed.

You are right I am guilty of enjoying a totally extatic day without symptoms, running around non stop. I will take heed and leave myself. Your explanation about the state of my muscles had made me understand that it is not galactic of me to think I will have more energetic than pre - PMR... Lol

I was 0.3. The first time I got tested in 2013 but managed to get it up to 30 when I got tested in August. I had been at the beach in July and didn't take supplements.

I was looking in a completely sixteen direction at first because 8 years ago, I suffered from a pituitary apoplexy which has flattened the gland. although it was asymptomatic when it happened, I thought my symptoms where due to hypopituitarism but my hormone levels where normal. I kept insisting that I needed to have a diagnosis but no one could pin point anything it seems

I live in Madrid, I moved here 45 years ago when I married a Spaniards. I'm profitably from San Francisco

Blimey - you MUST  be desperate! I'm developing a knee jerk reaction with the remote - except when it is simply too horrendously fascinating to be true!

Enjoy the day with no symptoms - but don't DO things! Just enjoy! I had poor sleeping patterns with the PMR - the pain woke me and so did hot flushes at about 4.30am! It could have been "my age" then but they are stillt here so it definitely isn't that now!

Hmmm - I wonder if there IS a pituitary link - some people think there is.

the last thing I would say would be" boring"  - as soon as I see one of your posts I zoom in on it  with gratitude!

Never boring Eileen .....very informative!......Have learnt so much from you, I tell my doctor and physio about you.....they have all been impressed! 

?The trouble is in my (humble) opinion is that all the "powers that be" don`t all sing from the same hymnsheet!   So we are all told different things....you have consistent knowledge that works for us all....Thank You again.....

Never mind your humble opinion - it's true!