Grrrrrr hate these preds as I have put on around 10 kg's so feeling very tired lately, summer is fast approaching so will start to cut back then and will do it by half a mg a time hoping that will bamboozle this medication.
DITTO SO CAN SYMPATHISE. CAN YOU HELP ME I GOT A LOVELY REPLY FROM MRSMOP I WAS ANSWERING HER AND IN MIDDLE OF THE REPLY I PRESSED WRONG BUTTON AND DELETED HER E-MAIL, I FEEL REALLY BAD. I CANNOT FIND A WAY BACK TO APOLOGISE FOR THE MISUNDERSTANDING. CAN YOU TELL ME HOW. I AM NEW TO ALL THIS AND REALLY VALUE EACH MEMBERS CONTRIBUTION.
So on that evidence - are you in South Africa or Australia/NZ? ;-)
The question is though - which is worse? Being cuddly or being in pain? I know which I chose.
Without more details I can't really say a lot - would need to know when diagnosed, what dose/doses and for how long and so on. But it is possible to lose weight whilst on pred though it does require a fair bit of discipline. Keeping carbs to a minimum does make a big difference - combining that with the 5:2 diet to kick start the weight loss has resulted in 16kg of pred fat disappearing. Others have used WeightWatchers or the like.
It sounds as if you are struggling to reduce though - so the posts 4 and 5 in this thread on this site may beof interest:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Almost all of us have a love/hate relationship with pred - but the happiest people are the ones who accept that while they may have some nasty side effects they do allow us a quality of life that we wouldn't havve without them. And I put on a lot of weight because of PMR and being inactive, I just couldn't exercise as I had done before. I had 5 years of PMR with no pred - never a day without pain and many things became impossible to do: if I couldn't get there by car and not have far to walk I couldn't do it. If all the pred did was stop the pain it was worth it.
I only put on about 4 or 5 kgs during the 3 1/2 years of pred. Started on 60mgs now on 5. However, In last 5 months I've taken off 7/8 kgs - so don't lose hope. Did you say summer is approaching? Lovely! Winter has just started in Europe!!
Here in Suedtirol we have had the most beautiful autumn weather for the last few days! About freezing overnight but 11C or so in the afternoon even in the mountains - and a blue blue sky without a cloud in sight. I have been subathing on the balcony every afternoon - have to make the most of it though as temperatures are to be back in single figures and rain on Tuesday...
Hi Seena , I have put on weight also and am trying very hard to reduce carbs as suggested - only veges and fruit for me 5:2/day and only 1 meal of either chicken or fish also no cheese ( poor me) and only yoghurt with my pred. I don't seem to be able to give up my coffee so limit it to 2/day Had rice last night ( shouldn't have as my sugar was 9.4 this am). I am goin to reduce again 2nd time now as I have been down as low as 7mg then had to go back up to 10mg the other day so will stay here for 2 weeks and try again very very slowly so we can bamboozle the pred together...Good luck
Ich wuenschte ich koennte in Suedtirol sein! Lucky you!! :-)
Coffee is a must. I can relate to this. Good luck with your prednisone bamboozle challenge! It's a tough one!
Hi Eileen. We too have had a great Autumn - not looking forward to winter though!
Another thing! Since the specialist said my blood was "normal" I've been on 5 mgs of pred. However, the pain is awful. Have you ever increased the dose yourself? Nervous to do so, but would love to have a few hours pain free.
Reductions should NOT be based on blood tests as they are too unreliable - it should always be the symptoms that govern the dose. If the pain is back you need a higher dose, the one that controls the symptoms, otherwise it is pointless taking pred at all.
I have only once had a specialist dictate to me what he wanted me on - and a couple of months later I had a massive flare. Otherwise I have managed my own reductions - hence the development of the "dead slow and nearly stop" reduction plan. Go to your GP and tell them the problem and go back to the last dose where you were comfortable. If this is a flare caused by too low a dose you may need a short period with a higher dose though to get the inflammation under control.
Thanks for all your replies as for the weight problem it makes me very tired really it just goes round in circles put on weight ,feel so flat ,so dont want to do too much, get depressed so eat more .....back to square one.
I am very upset with myself so I am going to repaint the bathroom and re-tile it as its a grotty cream colour will redo in white.
If I am going to get more exercise may as well achieve something at the same time.
I am in Aus and there is going to be a long long hot summer ahead apparently,hoping to sell our property and move to the coast its our dream now in our retirement to walk along the beach most days with our two glorious Golden Retrievers.
Must think positive and its about time I gave myself a really good talking to.
THIS ILLNESS AND MEDS DO SUCK. I SOMEHOW MANAGED TO CLEAN MY BEDROOM TODAY. I COULD HAVE SOMEONE DO IT FOR ME, BUT I SO DESPERATELY WANT TO BE THE PERSON I WAS BEFORE THIS ILLNESS,THAT I LITERALLY PUSH MYSELF. THE SWEAT RAN DOWN MY BODY LIKE RAIN,THE WEAKNESS IN MY LEGS AND ARMS FELT LIKE I HAD RUN A MARATHON. I THEN HAD THE SHAKES/THIRST. I WAS WONDERING IF ANY OF YOU EXPERIENCE THIS. I HAVE BEEN TESTED EACH TIME FOR DIABETES BUT IT IS NEGATIVE. I FEEL LIKE 95 NOT 60. I WAS SO INTO BEING ABLE TO DO MOST ALL THINGS PRIOR TO THIS, EVEN THOUGH I HAD POLIO AT 10 YEARS OLD, AND NOW HAVE POST POLIO SYNDROME. HOW LONG WILL I FEEL LIKE I AM NOW, OR IS THIS PERMANENT. I FIND THIS FORUM REALLY HELPFUL IT IS SO NICE TO HAVE PEOPLE LIKE MYSELF WHOM I CAN COMMUNICATE WITH. I WENT FOOD SHOPPING WITH MY HUSBAND YESTERDAY. WE DISCOVERED ON ARRIVAL AT THE STORE MY MOBILITY SCOOTER REFUSED TO WORK EVEN THOUGH BATTERY WAS FULLY CHARGED SO I ENDED UP IN A SUPERMARKET WHEELCHAIR. I HAVE MY OWN WHEELCHAIR THAT IS MANUAL BUT AM NOT ALLOWED PUSH MYSELF SO AM GETTING AN ELECTRIC ONE. I LOVE THE MOBILITY SCOOTER, AS IT GIVES ME THAT BIT OF FREEDOM THAT I SO DESPERATELY MISS. APART FROM THE HASSLE, WE DID HAD A NICE MEAL OUT AND SHOPPED FOR FOOD. I WAS TOTALLY WIPED OUT ON ARRIVING HOME. I WENT TO BED AND HAD A REASONABLE NIGHTS SLEEP.
We have just had a thread on another forum that fits here so well. Someone talked about "beating PMR" and we got into a discussion about whether we can fight it - personally I don't like the analogy of illness being a battle, never have done.
But we did all agree I think that accepting the change is a positive step because then you can save the energy you would devote to fighting what you hate about PMR and use it in some other way. The one thing I DO think is important is to push yourself to get out of bed for a start - but then go out of the door for some fresh air. And then build up a walk - round the garden, then down the road a bit and back, always increasing it a bit each time. The fresh air and change of scene improve the "Black Dog" and even a small amount of extra movement helps the weight problem.
Not wanting to discourage you - but the sort of activity involved in painting the bathroom and retiling it is the sort of thing that I found terribly difficult. It is repeated movements which tire the muscles more than doing lots of different things. I also couldn't hold things because of the PMR so tiling would have reduced me to tears. Choose challenges that won't upset you when you have to abort part way - both MrsO and I used to get halfway on a walk and feel we'd hit a brick wall. She had to be rescued by a neighbour on one occasion!
Where in Aus are you? I'm nosey - and love to envisage where our overseas friends are.
And if you are interested, follow the second link in the first post on this thread to find the forum where we've just had this conversation - it's a bit different from this one and is like a giant virtual coffee morning where we talk about EVERYTHING!
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
YOU WILL IMPROVE SOONER BY NOT FORCING YOURSELF TO DO THINGS LIKE THAT. WE ALL WANT TO BE THE PERSON WE WERE BEFORE BUT IT ISN'T GOING TO HAPPEN ANYTIME VERY SOON.
IN PMR YOUR MUSCLES HAVE BECOME INTOLERANT OF EXERCISE - EVEN A SHORT WALK HAS BECOME THE EQUIVALENT OF RUNNING A MARATHON, CLIMBING THE STAIRS IS LIKE A MOUNTAIN WALK. THE MUSCLES GET MUCH MORE TIRED, AND TAKE MUCH LONGER TO REPAIR THE TINY TEARS IN THEM THAT HAPPEN IN EXERCISE. THE SHAKES ARE THE RESULT OF THAT - AND ALTHOUGH THE BLOOD TESTS FOR SUGAR LEVELS ARE NORMAL, BECAUSE THE BLOOD SUPPLY TO THE MUSCLES IS IMPAIRED THEY ARE SHORT OF FUEL AND REACT LIKE THAT. yOU MUST LEARN TO PACE YOURSELF - BECAUSE WHEN YOU OVERDO THINGS YOUR BODY SUFFERS MORE. IT IS OK TO DO THINGS - JUST NOT MORE THAN YOUR BODY CAN COPE WITH AND THAT IS SOMETHING YOU HAVE TO WORK OUT FOR YOURSELF BY DOING A BIT, THEN IF YOU WERE OK NEXT DAY YOU CAN DO A BIT MORE NEXT TIME. KEEP A DIARY AND ALWAYS LEAVE A DAY BETWEEN ACTIVITIES FOR REST AND RECOVERY.
IT ISN'T FOR EVER - PMR AND GCA ARE LIMITED ILLNESS, NOT DEGENERATIVE, AND WILL EVENTUALLY BURN OUT. YOU WON'T BE BACK WHERE YOU WERE, YOU WILL BE OLDER AND YOUR WILL, UNAVOIDABLY, BE LESS FIT, BUT IT WILL BE BETTER.
ONE LADY ON THE OTHER FORUM DECIDED THAT, AFTER FIGHTING TO BE THE PERSON SHE HAD BEEN BEFORE AND HAVING FLARES OF THE PMR EVERY TIME SHE OVERDID IT AND NEVER SUCCESSFULLY REDUCING THE PRED DOSE FOR LONG, THAT SHE WOULD BECOME A "PRECIOUS PRINCESS". SHE DITCHED HOUSEWORK, DECORATING, GARDENING - ALL HER BELOVED PASTIMES AND RESTED, SITTING IN THE GARDEN INSTEAD OF DOING THE LAWN, WEEDING... A FEW MONTHS LATER SHE REASLISED SHE DID FEEL A LOT BETTER AND THE LAST REDUCTION HAD GONE VERY WELL. AFTER A FEW MORE MONTHS SHE GOT UP ONE MORNING AND NOTHING HURT! AND NOW SHE IS WELL ON THE WAY TO 1MG PRED AND IS DOING ALL THOSE THINGS SHE WANTED TO DO BUT COULDN'T REALLY MANAGE. SHE IS ABSOLUTELY CONVINCED IT WAS THE REST THAT MADE THE DIFFERENCE.
I CAN TELL YOU ALL THIS AS MANY TIMES AS I LIKE - YOU HAVE TO BE CONVINCED OF IT FOR YOURSELF. BUT I PROMISE - IT DOES MAKE LIFE A LOT LESS UNPLEASANT AND DEPRESSING. WHEN YOU ARE OVERTIRED YOU BECOME BAD TEMPERED AND SNAPPY, EVERYONE DOES. AND EVENTUALLY PEOPLE AVOID YOU BECAUSE OF IT. YOU WILL LOSE SOME THINGS FOR A WHILE - BUT YOU WILL GAIN A LOT OF OTHER THINGS, INCLUDING NEW HOBBIES AND NEW FRIENDS WHO ACCEPT YOU THE WAY YOU ARE NOW AND WHO DON'T FORCE YOU TO DO THINGS YOU CAN'T AT PRESENT THAT ARE TOO MUCH FOR YOU. THAT IS PERHAPS SOMETHING THAT IS VERY HURTFUL - A LOT OF PEOPLE YOU THOUGHT WERE FRIENDS MAY DISAPPEAR BECAUSE THEY CANNOT COPE WITH THE NEW YOU.
THESE ARE THINGS WE'VE ALL EXPERIENCED - JUST LIKE THE SWEATS AND WEAKNESS YOU MENTIONED. IT IS PART OF THE ILLNESS, IT WILL GO AWAY, BUT IT MAY TAKE TIME AND A CHANGE ON YOUR PART.
Well said, Eileen.
THANK YOU SO MUCH EILEEN FOR TAKING THE TIME TO WRITE ALL THAT INFORMATION FOR ME. I REALLY APPRECIATE IT. I WILL FOLLOW YOUR ADVICE. I AM EAGER TO LEARN HOW TO PACE MYSELF.
TWO FRIENDS DROPPED BY TODAY FOR A FEW HOURS. ON ARRIVAL (3 MONTHS SINCE THEY LAST SAW ME), THEY BOTH SAID 'YOU LOOK SO WELL, WE EXPECTED YOU TO LOOK A LOT WORSE, FROM YOUR DESCRIPTION ON THE PHONE'. I HAVE LEARNED FOR COMMENTS LIKE THAT TO WASH OVER ME. ONLY I KNOW HOW I FEEL.
I THINK IT IS THE 'GUILT' KICKS IN WITH ME, AS I WAS ALWAYS READY TO VOLUNTEER TO CARRY ON DOING STUFF, EVEN WHEN TIRED NOW I KNOW THAT IS POSSIBLE.
IT IS SO REFRESHING TO COME ON HERE, AND HAVE ALL YOU LOVELY KNOWLEDGE, CARING, KIND PEOPLE WITH THE SAME ILLNESS WHO UNDERSTAND AND HELP ME LEARN HOW TO COPE WITH WHAT I HAVE NOW.
SO ONCE AGAIN MANY THANKS FOR ALL THE HELP FROM ONE AND ALL OF YOU. BY THE WAY EILEEN WERE YOU A DOCTOR, OR MEDICAL PERSON IN YOUR CHOSEN CAREER. CHEERS.
THAT IS A BRILLIANT SUGGESTION WILL START TOMORROW. THANKS.
NO ANNA MARIA, AS I SAID TO SOMEONE EARLIER TODAY, MERCIFULLY NOT A DOCTOR! i WENT TO MED SCHOOL BUT REALISED QUITE QUICKLY IT WASN'T THE RIGHT PLACE FOR ME. I WORKED IN THE NHS AS A TECHNICIAN, DID A PHYSIOLOGY DEGREE, TAUGHT TECHNICIANS, SPENT A FEW YEARS IN GERMANY WITHMY HUSBAND AND LEARNT GERMAN AND WORKED AS A MEDICAL TRANSLATOR AND DID MEDICAL RESEARCH... HE WORKED INTHE NHS, BOTH DAUGHTERS ARE IN THE NHS - IT ALL RUBS OFF!
VOLUNTEERING DOESN'T HAVE TO MEAN DOING THE PHYSICALLY HARD WORK - I SIT IN FRONT OF MY COMPUTER, JUST AS I DID IN MY PREVIOUS LIFE BUT NOW I AM ANSWERING QUESTIONS AND WRITING ARTICLES RELEVANT TO PMR AND GCA. I'D RATHER BE SKIING BUT WHATEVER ;-)
SOMETIMES I THINK IT WOULD BE HELPFUL TO LOOK HOW WE FEEL - BUT THEN WE'D HAVE TO LOOK AT OURSELVES IN THE MIRROR! I AVOID MIRRORS AT ALL COSTS...
Where do you get the energy to do the painting and tiling I can barely do anything. Hope you can get to the beach and cool off a bit. Which part of aus
You are amazingly supportive and I love reading your passages of wisdom
Thks