4 Years on and still have to rely on prednisolone to get me trough the day !

[Bouvier]

I am getting so depressed with my pred fogs, the constant tiredness. sleepless nights I'm in my mid seventies was an active normal person till this thing crawled into me started on 25mg then slowly whittled down to 15 slowly down to now 5mg had a couple of bloods flares again up with the preds & then slow downs back to where I am now, I just get so tired and my friends say to me you look so good ! Yes the reason for that is simple a cortisone moon face !! No wrinkles !!! the docs keep saying just keep doing some walking Ha! the only time I feel comfortable with that is behind a shopping trolley or hanging into the bars of our walking machine but nearly pass out from exhaustion after a few minutes. my weight is out of control which stresses me out as nothing fits me... If it wasn't my beautiful husband who thank god understands what its like for me (retired surgeon) Now after all my whinging my question is... I have two friends in their late eighty's who have had pmr several years ago and their doc's made the still have one mg on pred each day why?

[yogabonnie]

So sorry you are feeling so down. This is drastic. My friend who had Lupus symptoms..and some markers for it..did this and no longer has the markers so I had to do it for the PMR . (did it for 3 months before screwing up ..I'm going to do it again.) I felt WONDERFUL and lost a lot of weight. But it IS drastic but so is misery... It is by Dr.Brooke Goldner (you can also google her) .. who says.. she cured her Lupus. What the heck. It made my moon face go away and did give me tons of energy. (and I had to keep doing it for a while since I invested in a vita mix. haha!!!) Here is the YOUTube link.. (you can also go to smoothie shred . com (but no need to JOIN for $ ) I used this. Long but convincing to me! youtube.com/watch?v=JpCELog...(Not working as expected?) There will also be lots of other suggestions so go with what helps the most for you. I have NOTHING invested in this method it just was easier for me because i love fruit(and now Greens) and don't love meat so much.

[Constance13]

Hello Bouvier,

Sorry you are in a state I know it's not easy, even after 4 years, and we just didn't expect our retired lives to be like this. (I'm 79, PMR 6 1/2 years).

One of the most difficult decisions I have ever made is "acceptance". I am lucky in that I don't get depressed. Of course I have bad days, lethargic, in pain, stiff, but my brain kicks in and says "what do you expect at your age?" Most people at this age have something to put up with and we are lucky it's not what is known as "a serious illness" - even though it is so debilitating.

My doctor told me a few weeks ago that I will probably be on Pred for life (I'm on 4 mg). So be it! Just another thing to accept!

Kindest regards to you. Hope things improve and you will be able to look forward to Christmas.

💐💐 🎄🍀

[PMRpro Ambassador]

Some people find that staying on the low dose they achieve keeps a return of PMR at bay. 1mg is such a low dose it has no side effects. If it works - why rock the boat by trying to stop it?

At a guess you are on a dose that is now low enough for your adrenal glands to need to contribute something - and maybe they are not. As a start, ask your doctor to get a synacthen test done to see if your adrenal glands are capable of producing cortisol. That doesn't however mean they are doing so, there is a very complicated feedback system which governs it. But at least you know if they can if you reduce slowly enough and everything else is working.

And to be honest - you are probably on slightly too low a dose to manage the PMR. Do you feel better at 6 or even 7mg? If so - go back there.

I have had PMR for over 14 years - that is very unusual as the average duration for pred management is 5.9 years - but I have never felt as bad as you describe. But that is as much because I refuse to "just manage" simply to be on a slightly lower dose of pred. I take what I need. Quality of life is everything.

By "walking machine" do you mean a treadmill? They are not as good as even going to the mall and walking - when we walk we slow down, speed up, stop and look, use different muscles, on a treadmill we walk at a steady speed and can't slow down or speed up - we use the same muscles the same way all the time and in PMR that is as good as poison. Get yourself a rollator and go for short walks at first. Very short, literally just a few minutes out and back, and build up slowly overy few days, adding a minute at a time, no more. You will always have something to hang on to and a seat when you need it. You can't do it all at once when you have become unfilt, whatever the reason.

And look at your diet: cutting carbs drastically should help the weight problem. I lost 35 lbs of PMR and pred weight while still on over 10mgs of pred - I now need to lose some more as it has crept back up a bit over the last year or so because I haven't been as tough on myself over carbs as I should be. But it does work - and it also often helps the PMR as you cut the sugar and simple carbs which do tend to make the inflammation worse.

[Valnvaughan]

Hi

I suggest a course of Mindfullness......available to home study from a book such as ‘ Mindfullness for Health’.

Then a calorie control regimen by potion size and cut out carbs to halt and reverse the weight gain. Keep a chart......watch the numbers fall.

Then some positive thinking about how to improve your life. If a supermarket trolley push is easier than walking, acquire a walker or buy a charity shop pushchair and use that....pretend grandma. Or if funds allow, buy a mobility scooter to give you freedom to go for a pint of milk.

Valerie