PREDNISOLONE AND SWEATING

THANKS FOR REPLYING SO QUICKLY EILEEN H. HOW ARE YOU FEELING AND HOW DO YOU COPE WITH THE ILLNESS. I WOULD LIKE TO HEAR.

THE INFORMATION YOU PROVIDED WAS REALLY HELPFUL PLUS IT IS NICE TO HEAR FROM PEOPLE SUCH AS YOURSELF, AS I FEEL A BIT ISOLATED. BECAUSE I LOOK 'NORMAL' I AM TOLD BY MANY FAMILY MEMBERS, AND SO CALLED FRIENDS IT IS HARD TO  EXPLAIN EXACTLY HOW THESE ILLNESS AFFECT ME. I HAVE STOPPED TRYING TO EXPLAIN, AND PREFER TO GO TO SITES LIKE WE HAVE HERE WITH LIKE MINDED INTELLIGENT PEOPLE.

I WAS DROPPED TO 40MG PREVIOUSLY THEN UPPED, THEN DOWN EVENTUALLY TO WHERE I AM NOW SINCE LAST SUNDAY. I HAVE ALSO BEEN PUT ON 1 ANTIBIOTIC A DAY TO TRY AND STOP THE CONSTANT INFECTIONS I HAVE BEEN GETTING. I HAD 7 IN ONE WEEK AWHILE AGO AND IT WAS NOT PLEASANT.

I DO WORRY ABOUT MY SIGHT AS THE RHEUMATOLOGIST THINKS I MAY HAVE GCA IN MY EYES. THEY LOOK A FUNNY THICK WHITE COLOUR UNDER MY LOWER LIDS LIKE IN THE PICTURES WE SEE ON THE SITES.

MY BROTHER HAS A VERY RARE FORM OF GLAUCOMA MISDIAGNOSED UNTIL AGE 21,  BY THEN HE WAS BLIND IN ONE EYE, AND PARTIALLY SIGHTED IN THE OTHER EYE.

WE WERE ALWAYS TOLD TO BE VIGILANT ABOUT OUR EYES. I DONE ALL I WAS TOLD, AND ON MY LAST YEARLY OPTICIANS VISIT IT WAS NOTED THERE WAS A PROBLEM I ALSO HAD NOTED SOMETHING WAS WRONG.

I WAS SENT STRAIGHT TO EMERGENCY WHO KEPT ME 4 HOURS WAITING THEN TOLD ME 'TO GO HOME AND COME BACK THE NEXT DAY.'

I WAS SENT BACK AGAIN BY THE OPTICIAN, BUT WAS NEVER REFERRED TO A CLINIC UNTIL I DEMANDED TO GO. A PROFESSOR  IN THE CLINICTOLD MY HUSBAND, AND MYSELF I NEEDED TO SEE A NEUROLOGIST ASAP.

NOTHING HAPPENED SO I CHASED IT. I SAW THE NEUROLOGIST THIS YEAR ON OCT 22ND AT THE LOCAL HOSPITAL. A YEAR TOO LATE IN MY BOOK. I EVENTUALLY FOUND THE 'ELUSIVE' REFERRAL LETTER AT THE NEUROLOGIST VISIT TO DISCOVER IT WAS JUST PUT AS A 'ROUTINE' APPOINTMENT. I WAS HORRIFIED.

THE NEUROLOGIST I SAW ON THE 22ND LIKE  ALL DOCTORS ETC WHERE I LIVE NOW, DO NOT KNOW HOW TO TREAT MY 'COMPLICATED' MEDICAL CONDITIONS. SO AFTER DESTROYING MY HEALTH, AND SIGHT OVER THE COURSE OF THE LAST YEAR, I WAS TOLD I AM BEING SENT BACK TO THE CARE OF THE LONDON CONSULTANTS TO PICK UP THE PIECES. TO QUOTE THE RHEUMATOLOGIST IN LONDON HE SAID 'YOU HAVE HAD WOEFULLY INADEQUATE CARE UNDER YOUR CLINICIANS WHERE YOU LIVE'. I AGREED WITH HIM ON THAT. MJUST KEEP SMILING I AM TOLD, AND THAT ONLY WEAK PEOPLE HOLD ONTO THEIR ANGER.

I HAVE ONLY HAD PMR OFFICIALLY - ALTHOUGH I HAVE HAD SOME OF THE GCA SYMPTOMS LIKE JAW PAIN AND EVEN TINGLING SCALP FOR A FEW WEEKS AT THE BEGINNING AND DOUBLE VISION FOR A WHILE A FEW YEARS AGO BUT THEY THEN DISAPPEARED AGAIN. HOWEVER, A CONSULTANT HERE IN ITALY AGREES I PROBABLY DO HAVE LARGE VESSEL VASCULITIS, JUST IT HASN'T AFFECTED MY VISION REALLY. WHATEVER - PMR WAS BAD ENOUGH! I'VE HAD IT FOR 10 YEARS, THE FIRST 5 YEARS BECAUSE NO-ONE COULD DIAGNOSE IT SINCE I WAS "TOO YOUNG" AND MY BLOOD TESTS HAVE ALWAYS BEEN NORMAL I WASN'T GIVEN PRED. I'M DOWN TO  FOUR MG PRED NOW - THREE WAS A STEP TOO FAR THOUGH.

I HAD SOME POOR TREATMENT BY THE NHS BUT NOTHING IN YOUR LEAGUE AT ALL - I AND MY HUSBAND HAVE WORKED IN THE NHS FOR ABOUT HALF OUR CAREERS AND THE CHANGES IN THE LAST TEN YEARS HAVE BEEN HORRENDOUS. MY HUSBAND RETIRED EARLY, LOSING QUITE A CHUNK OF PENSION , BUT HE COULDN'T FACE THE CONSTANT FIGHTS TO GET MONEY, NEW EQUIPMENT AND STAFF ANY LONGER AND THEY HAD EFFECTIVELY STOPPED HIM DOING RESEARCH WHICH WAS THE SUGAR COATING ON THE PILL. WE MOVED HERE TO NORTHERN ITALY - AND WHILE I HAVE TO PAY SOME OF THE COSTS OF ANY TREATMENT I HAVE, OTHER THAN THE GP AND AS AN IN-PATIENT, THE SERVICE IS VERY GOOD. THE GP IS LIKE IT USED TO BE IN THE UK - GO ALONG AND WAIT YOUR TURN! ALWAYS SEEN THE SAME DAY - AND SHE DOES HOUSE CALLS! SHE HAD WORKED IN RHEUMATOLOGY BEFORE BECOMING A GP WHICH IS REALLY USEFUL. 

THE NORTHEAST OF ENGLAND PMR AND GCA SUPPORT GROUP MADE A DVD CALLED "YOU ARE NOT ALONE" TO TRY TO EXPLAIN WHAT PMR AND GCA AND PRED DO TO US, EVEN THOUGH WE LOOK FINE. THEY ALSO HAVE A FORUM OVER AT FORUMUP WHICH IS LIKE A BIG SUPPORT GROUP - WE "CHAT" ABOUT ALL SORTS OF THINGS ON-LINE. 

WHERE DO YOU LIVE? I WONDER IF THERE IS A REAL LIVE SUPPORT GROUP YOU COULD CONTACT - EVERYONE KNOWS WHERE YOU ARE COMING FROM AND THERE IS NO "BUT YOU'RE LOOKING SO WELL..." NONSENSE!

ROUTINE APPOINTMENT? NO, SHOULD HAVE BEEN AN EMERGENCY REFERRAL, MADE BY PHONE! URGENT ISN'T MUCH BETTER EITHER. YOU REALLY WOULD THINK THAT A CONSULTANT KNEW HOW LONG THE WAITS ARE WOULDN'T YOU? AN OPTICIAN IN SCOTLAND WAS IN BIG TROUBLE WHEN HE SAW A PATIENT WITH GCA BUT WASN'T SURE SO HE SLEPT ON IT - BY THE NEXT MORNING THE PATIENT WAS BLIND. MY OWN OPTICIAN WOULD SEE SOMEONE AHEAD OF OTHER PATIENTS, RING THE HOSPITAL AND TELL THEM THE PATIENT WAS ON THEIR WAY AND WAS TO BE SEEN IMMEDIATELY THEY GOT THERE AND WROTE A LETTER WITH ALL HE HAD FOUND.

NO DOUBT THE PEOPLE TELLING YOU TO KEEP SMILING ARE PERFECTLY HEALTHY WITH FULL VISION? AND NO - I DON'T THINK ONLY WEAK PEOPLE HOLD ONTO ANGER. THE STRONG AMONGST US USE IT FOR GOOD - SO THAT HOPEFULLY NO-ONE ELSE WILL SUFFER WHAT YOU HAVE HAD TO GO THROUGH

AS I SAY - LET US KNOW WHERE YOU LIVE AND WE'LL TRY TO FIND SOME OTHERS IN YOUR AREA.

THANKS FOR THAT EILEEN H. ITALY WAS MY FAVOURITE HOLIDAYBDESTINATION. IN FACT WE WERE BOOKED ON A 15 DAY CRUISE AROUND THE MED THIS MONTH, BUT HAD TO CANCEL AS THE INSURANCE COMPANY REFUSED TO INSURE ME.

 I WORKED FOR THE NHS ALSO. I LIVE IN DARTFORD KENT I FEEL LET DOWN BY THE SYSTEM. THE NHS WAS THE BEST IN THE WORLD.

NOW IT IS ALL ABOUT SAVING PENNIES, AND FAILING MISERABLY ON PATIENT CARE. WHY IS IT THEY CAN PAY OUT ON COMPENSATION CLAIMS, BUT CANNOT SEEM TO GET IT RIGHT IN THE FIRST INSTANCE, THUS SAVING THE LIKES OF US FROM HAVING OUR HEALTH AND RETIREMENT AGE DESTROYED. SOUNDS LIKE YOU HAVE THE KIND OF SYSTEM THAT WE ONCE HAD. NOW I CANNOT GET AN APPOINTMENT AT MY DOCTORS UNLESS HE BOOKS ONE IN ADVANCE.

THAT ANSWERS A FEW QUESTIONS - THERE ARE A FEW PEOPLE IN YOUR AREA WHO HAVE HAD TERRIBLE FIGHTS OVER DIAGNOSES OF GCA. I HAVE A LIST OF PLACES I WON'T LIVE IN THE UK IF YOU PAID ME TO. I SEE LODGER HAS REPLIED TO YOU ABOUT A LOCAL SUPPORT GROUP.

HAVE YOU BEEN IN CONTACT WITH THE RNIB - YOU DON'T HAVE TO BE TOTALLY BLIND FOR THEM TO HELP. THERE ARE WAYS WITH COMPUTERS TO MAKE EVERYTHING MUCH LARGER AND EVEN FEEDING STUFF THROUGH A BIGGER MONITOR, EVEN A TELEVISION HELPS TOO. 

BOTH OUR DAUGHTERS ARE IN THE NHS - ONE IS A PARAMEDIC IN YORKSHIRE AND THE OTHER A NEONATAL NURSE IN SCOTLAND. THE TWO OF THEM TOGETHER EARN LESS THAN THEIR COUSIN WHO MARKETS BOOZE. THE PARAMEDIC WORKS 12 HOUR SHIFTS, WITH ABOUT 2/3 OF THEM BEING NIGHTS AND WEEKENDS - FOR WHICH SHE GETS ABOUT 1/4 ON TOP OF BASIC PAY HOWEVER MANY HOURS SHE WORKS. THEN PEOPLE WONDER WHY STRIKES ARE THREATENED.

YOU ARE ALSO NOT ALONE IN FINDING OUT WHO YOUR REAL FRIENDS ARE - LOTS OF US HAVE BEEN THERE.

Hi Eileen. .We have spoke before. ..you mentioned a cd or did re called you are not alone.where can this be obtained.many thanks gail

THANKS FOR THAT, IT DOES NOT SURPRISE WOULOD LOVE TO SEE THAT LIST. I DO KNOW THAT MY LOCAL HOSPITAL IS THE MOST SUED IN THE UK. THEY SAY THEY LEARN LESSONS BUT NEVER HAVE SO FAR, IT IS ONLY WORDS WITH THEM. SAD FACT THEY PAY ANYONE MORE INSTEAD OF THOSE ON THE FRONT LINE.

Follow this link to another post on this site. 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

the first link will take you to the PMRGCAUK Northeast of England support site. This was the group that made the DVD "You are not alone". It also has a lot of info about PMR/GCA and stories from patients.

I HOPE YOU ARE ON THE LIST OF PEOPLE SUEING THEM? MY HUSBAND ALWAYS TOLD PEOPLE TO MAKE A FUSS WHEN THEY HAD BEEN MESSED ABOUT - INCOMPETENCE HAS PUT YOU IN A ROTTEN POSITION. MONEY CAN'T REPLACE YOUR VISION - BUT IT CAN HELP PAY FOR ASSISTANCE.

YES I AM DEFINATELY ON THE SUING LIST. I BELIEVE THEY NEED TO BE MADE AN EXAMPLE. MONEY WILL NOT REPLACE MY LOST VISION ETC BUT WILL CERTAINLY HELP AS WE HAD TO PAY FOR A WET ROOM OURSELVES. BECAUSE WE BOTH WORKED WE GET NO HELP, SO IT HAS BEEN AN EXTREMELY EXPENSIVE TIME FOR US. I AM SUING ON A NO WIN NO FEE BASIS AND SAID SOLICITOR HAS BEEN VERY SUCCESSFUL SO FAR.

HELLO MRSMOP. THANKS FOR REPLYING SO QUICKLY. AS I SAID TO EILEEN H I FEEL QUITE ISOLATED, I AM LUCKY TO HAVE A GOOD KIND HUSBAND WHO IS VERY ENCOURAGING, AND KEEPS ME FOCUSED. MY LAPTOP IS A FRIEND, AS IS MY LITTLE TERRIER WHO STAYS BY ME ALL THE WHILE EXCEPT WHEN MY HUSBAND TAKES HIM FOR HIS WALK.

WE WERE BOTH THROWN IN AT THE DEEP END, AND ALLOWED TO SWIM OUT AGAIN WITHOUT ANY SUPPORT.

IN FACT FAMILY, AND FRIENDS WHO WE HELPED OVER YEARS TURNED THEIR BACKS ON US. ONE GOOD THING THOUGH WE FOUND OUT JUST WHO WE CAN NOW TRUST, AND RELY ON IN A REAL CRISIS.

YES, CAPITALS ARE BETTER FOR ME TO READ. I MISS READING VERY MUCH AS I WAS AN AVID READER PRIOR TO THIS. I HAVE JUST REPLIED TO EILEEN H, SO YOU WILL SEE JUST HOW IT ALL WENT FOR ME. I HOPE BY BEING ON HERE THAT I WILL FIND THE SUPPORT AND HELP THAT HAS BEEN SO LACKING IN MY LIFE OF LATE. DO LET ME KNOW HOW YOU COPE, AS IT GIVES GREAT ENCOURAGEMENT TO ME TO GET ON WITH MY LIFE AS IT IS NOW.

HELLO I APOLOGISE IF I DELETED ONE OF YOUR MAILS BY MISTAKE. IT WAS UNINTENTIONAL. I AM NEW AT THIS SO MAKE MANY MISTAKES WITH MY BAD EYESIGHT

YOU DIDN'T DELETE MY POST ANNA MARIA, WHEN I POSTED, IT SAID ERROR, SO I PRESSED ENTER AGAIN, HENCE THE DOUBLE POST.  A MOD HAS DELETED ONE!

THIS HAS BEEN HAPPENING QUITE A BIT THE LAST FEW DAYS - I'VE HAD A COUPLE OF DUPLICATED POSTS TOO SO IF IT HAPPENS NOW I LOAD THE SITE FROM THE EMAIL IN ANOTHER WINDOW ON THE COMPUTER AND LOOK TO SEE IF MY POST IS THERE! 

ANNA MARIA - WE CAN'T DELETE ANYTHING EVEN OUR OWN POSTS WHEN WE NEED TO, THERE IS NO EDIT FACILITY ON THIS FORUM - WHICH IS WHY THERE ARE TYPOS IN MY POSTS IF I DIDN'T READ THEM CAREFULLY BEFORE PRESSING REPLY - GRRRRRRR!!!!!!

THANKS FOR REPLYING I THOUGHT I HAD DONE IT AND I DO NOT LIKE TO INTENTIONALLY OFFEND ANYONE. HOPE YOU ARE HAVING A GOOD DAY. I FEEL QUITE TIRED. I DID NOT SLEEP LAST NIGHT I HAVE THRUSH IN MY MOUTH FROM ANTIBIOTICS. RANG DOCS WHO PRESCRIBE NYSTATIN FOR ME. I AM OFF OUT ON MY MOBILITY SCOOTER TO DO A BIT SHOPPING AND  HAVE A BITE TO EAT. VERY NICE SUNNY WARM DAY HERE YOU WOULD NEVER THINK IT IS 31ST OCTOBER

I SLEPT BADLY LAST NIGHT TOO.  I GAVE UP TRYING TO SLEEP AND GOT DRESSED AT 4AM!

I'VE GOT ORAL THRUSH TOO.  I COPE BY USING CORSODYL MOUTHWASH UNTIL THE THRUSH BECOMES A PROBLEM, THEN I HAVE TO HAVE FLUCONOZOLE  AND I USUALLY HAVE TO TAKE IT FOR 4 WEEKS.

I HOPE YOU ENJOY YOUR SHOPPING TRIP.  IT'S A LOVELY AUTUMNAL DAY HERE TOO, WITH THE LEAVES BLOWING AROUND, THEY SEEM TO LIKE MY PORCH.

I TRIED CORSODYL BUT NO GOOD. I GOT UP AT 2AM  MADE TEA AND HAD A LARGE SAUSAGE ROLL (BAD). MY LITTLE DOG WAS LOOKING AT ME FOR SCRAPS HE IS ON A DIET TOO.  WHEN I WAS FIRST DIAGNOSED AND PUT ON PRESDILONE I LOST MY APPETITE AND TASTE BUDS ETC. NOW I AM GONE THE OTHER WAY. I HAVE PUT ON WEIGHT AND MUST SERIOUSLY WATCH THINGS. I HAD TO STRUGGLE TO GET MY WEDDING RING OFF IT BECAME VERY TIGHT.  THAT IS ALWAYS AN INDICATION TO ME THE WEIGHT IS ON. I HAVE ALWAYS WEIGHED ABOUT 8 STONE I CANNOT DO KILOS), THE OTHER DAY I WAS TOLD I AM 10 STONE 13 POUNDS. THAT UPSET ME. I CAN SEE I HAVE A MOON FACE. WHEN I MENTION IT TO MY HUSBAND HE SAYS 'I DO NOT SEE IT, YOU LOOK THE SAME TO ME'. I THINK HE IS JUST BEING KIND. HE IS HAPPY THAT MOST OF THE BAD TIMES ARE BEHIND US. THIS IS A VERY COMPLEX ILLNESS, SO I TEND TO TAKE IT ONE DAY AT A TIME, AND NOT PLAN AHEAD LIKE I USED TO. I HAVE ENERGY SOMETIMES TO DO CHORES LIKE I USED TO, BUT MOSTLY I AM EITHER TIRED, OR ACHY IN MY MUSCLES. I HAVE POST POLIO SYNDROME THAT DISPLAYS SIMILAR SYMPTONS SO IT IS NOT ALWAYS EASY TO WORK OUT WHAT ILLNESS IS CAUSING WHAT, THEN OF COURSE I HAVE GCV. I THINK SOMEONE MUST WANT ME TO EXPERIENCE EVERYTHING GOING IN MY LIFETIME. I  AM HAPPY SO LONG AS I CAN GET UP EVERYDAY AND GO OUT ON MY SCOOTER. I AM A VERY SOCIAL PERSON SO IT HAS BEEN HARD STUCK IN BED ISOLATED FOR 4 MONTHS.

I AM VERY PLEASED THAT I HAVE GONE OFF CHOCOLATE, I WAS NEVER A HUGE FAN AND WOULD MUCH PREFER A PORK PIE OR SUASAGE ROLL BUT I SELDOM BUY THEM NOW, OTHERWISE I WOULD EAT THEM.

SINCE I HAVE BEEN TAKING MTX, MY DIET HAS BECOME VERY BIZARRE.  FORTUNATELY, I STILL LIKE FRUIT, SO I TEND TO HAVE GREEK YOGHURT WITH BLUEBERRIES AND ANYTHING ELSE I CAN FIND.  IT'S QUITE NICE IN THE MIDDLE OF THE NIGHT.

I HAVE NO ENERGY AND A LOT OF JOINT PAINS, WHICH MY DERMATOLOGIST HAD PUT DOWN TO THE STEROID TAPERING.

I NO LONGER KNOW WHAT MY BODY IS UP TO!

I AM LUCKY THAT I HAVEN'T BEEN STUCK IN BED BUT ID DON'T FEEL LIKE GOING OUT MUCH THESE DAYS AND SPEND MY TIME GOING TO MY VARIOUS HOSPITAL APPTS

I DO LIKE A NICE CUP OF COFFEE THOUGH, SO I THINK THAT IS PROBABLY NEXT ON THE AGENDA!  AND, GOODNESS ME, THE SUN HAS COME OUT

I LOST MY APPETITE AS SOON AS I STARTED ON PRED AND DIDN'T PUT MUCH WEIGHT ON WITH THE FIRST LOT OF PRED IN THE UK. THEN I WAS SWITCHED TO MEDROL WHEN I CAME TO LIVE HERE - AND WITHIN A VERY SHORT TIME HAD PUT ON WELL OVER A COUPLE OF STONE. ALSO HAD A BEARD AND MUSCLE WASTING - YUK! ALL WENT WITH THE LATEST VERSION OF PRED THOUGH THANK GOODNESS.

I'VE NOW LOST ABOUT 16KG/34LBS/TWO AND A HALF STONE - AND AM FINALLY MERELY OVERWEIGHT AND NOT OBESE! 72KG/159LBS/11ST 5LBS - 10ST13LBS IS STILL A HOPE!!!! I SUPPOSE I WAS 8ST ONCE UPON A TIME...