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PREDNISOLONE AND SWEATING

Posted , 9 users are following.

manymany
manymany

HELLO TO ALL AND THANKS FOR HELP. WHEN I   STARTED 60MG BACK END OF JULY, MY ONE BIG PROBLEM WAS 24/7 SWEATING RENDERING ME UNABLE TO MOVE OTHER THAN BE UNDER A FAN.  TWO WEEKS AGO AND REDUCED TO 20MG A DAY WAS STILL SUFFERING SWEATING.

IN DESPERATION I TOLD MY LOVELY NEW GP WHO CAME UP WITH THE FOLLOWING TO TAKE:

KWELLS SEA SICK TABLETS BY 3 A DAY (BAYER GROUP LABEL 300MICROGRAM TABLETS).

YES I WAS VERY SCEPTICAL, BUT IT WORKS AND ALSO WORKS FOR PEOPLE ON CERTAIN CANCER DRUGS THAT CAUSE SEVERE SWEATING. I FEEL AT LAST THAT I HAVE A CHANCE, BECAUSE I CAN GET UP AND BE 'NORMAL' AGAIN. I HATE THIS ILLNESS, BUT JUST HAVE TO GET ON WITH IT.

SORRY FOR CAPITALS I AM PART BLIND IN MY RIGHT EYE, AND PART DEAF IN MY RIGHT EAR DUE UNFORTUNATELY  BEING MISDIAGNOSED AS DEPRESSED FOR ONE YEAR. WHEN IN FACT I HAD TEMPORAL ARTERITIS/POLYMYALGA RHEUMATICA.

I AM QUITE ANGRY ABOUT THIS AS I HAD GOOD CONSULTANTS IN LONDON TREATING ME FOR POST POLIO SYNDROME AND THEY WANTED TO PERFORM AN MRI SCAN LAST YEAR WHEN I DISPLAYED MANY SYMPTONS OF ABOVE ILLNESS, THEY WERE PREVENTED BY THE LOCAL CCG FUNDING GROUP. WHO FORGET TO TELL US SO WE COULD HAVE APPEALED. AFTER INSTRUCTING A LAWYER IN AUGUST MY FUNDING WAS REINSTATED. UNFORTUNATELY FOR ME A BIT TOO LATE.

I EVEN SUFFERED A STROKE. THIS WAS PREVENTABLE  IF THE CCG WHO KNOW NOTHING ABOUT MY COMPLICATED MEDICAL HISTORY DECIDED TO PLAY RUSSIAN ROULETTE WITH MY LIFE CAUSING DEVASTATING CONSEQUENCES TO ME.

I AM JUST LETTING YOU KNOW IN CASE THIS HAPPENS TO SOMEONE ELSE. I HAD NOT HEARD OF THE 'CHOOSE AND BOOK' SYSTEM WHERE ONE CAN CHOOSE WHICH HOSPITAL TO GO TO. I NOW FEEL TOTALLY SAFE UNDER THE WONDERFUL CARE I HAVE/HAD PREVIOUSLY AT ST. THOMAS'S AND GUYS HOSPITAL LONDON.

4 likes, 35 replies

35 Replies

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  • panamabob
    panamabob manymany

    Posted

    WE ALL HAVE TALES TO TELL ABOUT INCOMPETENCE.nOT JUST IN THE nhs EITHER. in MY CASE TEH FIRST gp WHO HANDLED MY PMR DIDNT HAVE A CLUE.SAID IT WAS PROBABLY RAMIPRIL CAUSING IT.GOD HELP US!!

    FORTUNATELY A YOUNG DOC,NOT FULLY QUALIFIED,WAS ONTO IT LIKE A SHOT AND TOOK GREAT CARE OF ME.

    AGREE ABOUT PAYING COMPENSATION AND NOT PREVENTING THE MISTAKES IN THE FIRST PLACE.

    GOOD LUCK ANNA MARIA.DARE I SAY 'KEEP SMILING?'

    • manymany
      manymany panamabob

      Posted

      PANAMABOB WE MUST TRY TO KEEP SMILING OTHERWISE WE WILL BE CALLED 'PESSIMISTIC' OR 'DEPRESSED'. I CALL IT FRUSTRATION. GLAD YOU GOT SORTED WHY DO WE HAVE TO FIGHT SO HARD. EVERY NHS SITE SAYS 'IF YOU GET THIS OR THAT SEE YOUR GP IMMEDIATELY'. WHEN YOU DO IT IS ALMOST A CRIME, HOW ON EARTH COULD AN AMATEUR KNOW ANYTHING ABOUT MEDICAL ISSUES.
  • lodgerUK_NE
    lodgerUK_NE manymany

    Posted

    anna maria

    THERE IS A SUPPORT GROUP MEETING IN BROMLEY KENT ON 4TH NOVEMBER.  IF MY MEMORY SERVES ME RIGHT DARTFORD IS NOT SO FAR AWAY.

    THE DETAILS CAN BE FOUND ON PMR GCA UK WEBSITE UNDER GROUPS.

    • manymany
      manymany lodgerUK_NE

      Posted

      THANKS FOR THE INFORMATION WILL LOOK THAT UP. BROMLEY IS QUITE CLOSE BY.
  • noninoni
    noninoni manymany

    Posted

    I have a friend with Usher's syndrome who became totally deaf and partially blind in her 30s, but you would never know it if you meet her.  I believe she use a large screen computer, or she uses a tablet where you enlarge text with a hand gesture.  The reason I mention it is that reading upper case is generally harder than reading lower case.  I am thinking there must be a charity in U.K. for the blind and partially sighted that can help Anna Maria with such things.  Can you Brits find one for her?

        

    • lodgerUK_NE
      lodgerUK_NE noninoni

      Posted

      YES, THERE IS A BRILLIANT ONE THE ROYAL NATIONAL INSTITUTE FOR THE BLIND.

      THERE ARE ALSO 'TALKING BOOKS' AND THEY ARE ALL DONE BY VOLUNTEERS, THE RNIB CAN PUT PEOPLE IN TOUCH.  THEY ALSO DO NEWSPAPERS ETC.

       

    • manymany
      manymany noninoni

      Posted

      THANK YOU ALL FOR BEING SO KIND AND HELPFUL. I ONLY WISH I HAD FOUND YOU GUYS 3 MONTHS AGO WHEN THIS HAPPENED TO ME. I WAS IN MY BEDROOM/BED 24/7 ISOLATED. I NOW FEEL BLESSED TO HAVE SUCH A GREAT BUNCH OF PEOPLE WHO CAN BE HELPFUL WITHOUT BEING JUDGEMENTAL.
  • noninoni
    noninoni manymany

    Posted

    GREAT!  OK ANNA MARIE- YOUR MARCHING ORDERS ARE TO CONTACT THE ROYAL INSTITUTE FOR THE BLIND AND ASK FOR HELP WITH READING COMPUTERS AND OTHER THINGS.  THEN DO TELL US HOW IT GOES.

        PERHAPS OUR MODERATOR CAN ALSO CONTACT THEM AND TELL THEM ABOUT ANNA MARIE.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada manymany

    Posted

    Anna Maria, I am also very sorry you have had such a difficult time with your diagnosis and treatment.  I feel fortunate that my GP was willing to try the pred. to see if it have me any relief.  In Canada you have to wait for specialists but a good GP (and mine is) is willing to work with you.

    I had the same problem with sweating until I got down to about 5mg's of pred and then it eased off - at least most of the time.  I have had PMR since Dec of 2011 and was diagnosed in March of 2012 after taking my initial dose of prednisone.  I started at 20mg's and have slowly (after a bit of up and down with flares) reduced down to 5/4.  The most important thing is to take care of yourself and it is only you that knows how to do that.  I hope that you will find other people that will support you through this.  My husband is quite understanding (most of the time) and I am fortunate to have family that know me well enough to know that I don't complain but they can tell how I feel by my activity level and even my voice.

    Best of luck to you and I hope you feel better very soon,      Diana

    • manymany
      manymany Mrs.Mac-Canada

      Posted

      THANKS FOR YOUR KIND WORDS. I AM FINDING BEING ON HERE VERY SUPPORTIVE. I FEEL MUCH MORE HOPEFUL NOW I AM WITH PROFESSIONALS, RATHER THAN THE AMATEURS WHO CAUSED ME SO MUCH DAMAGE TO DATE. HOPE YOU KEEP GOOD.
  • noninoni
    noninoni manymany

    Posted

    In my area of Michigan, we have a Center for Independent Living.  I learned about it from a dwarf who has also become a good friend. At the center they  try  to pair you with people of similar diabilities but  with much more experience.  This is what this website does:  "Been there done that", but these centers do rather more than website chatting.  To help someone like Anna Marie, they would try to find someone else with partial blindness to meet with her.  Also they help with what is called  "assistive technology", such as software like JAWS which can verbalize the computer screen for you.  They might tell you about transportation for the blind and partially sighted. There is so much Anna Marie can learn from an equivalent organization like that. 
    • EileenH
      EileenH noninoni

      Posted

      RNIB WILL BE ABLE TO PROVIDE THAT SORT OF INFORMATION FOR ANNA MARIA. 

      THERE IS ALSO A GROUP CALLED "ACTION FOR BLIND PEOPLE" BUT THEY ONLY HAVE CENTRES IN LARGE CITIES, LONDON IS THE CLOSEST TO ANNA MARIA, BUT i THINK THEY MAY BE ABLE TO PROVIDE INFO FOR HER.

      ANNA MARIA - SORRY IF YOU ALREADY KNOW THIS! 

  • manymany
    manymany

    Posted

    Thanks for the information. I was not aware of it previously. Have a good day.
  • christine51947
    christine51947 manymany

    Posted

    HI AND WHILE I KNOW THIS IS AN OLDISH THREAD i FEEL FOR YOU AND YOUR STRUGGLE.  I AM A PPS SUFFERER AND MY SPECIALIST IN LONDON JUST REFERED ME TO THE PMR GCA FOLKS FOR FURTHER INVESTIGATION.  I HAVE THE MOST AWFUL SWEATING TO SO BAD THAT I DON'T GO OUT NOW AND I AM GOING TO TRY YOUR DOCTORS IDEA OF QWELLS.  I LOOK NORMAL TO ALTHOUGH I HAVE LOW SYNDROM DOWN BEAT NYSTAGMUS IN MY EYES AND I AM VERY WEAK MOST TIMES BUT WE SOLDIER ON DON'T WE.  GOOD TO HEAR OTHER FOLKS STORIES.  I WILL READ MORE.
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