PREDNISOLONE AND SWEATING
Posted , 9 users are following.
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
EileenH manymany
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NOW YOU HAVE GOOD CARE I HOPE YOU WILL PROGRESS WELL - THOUGH OF COURSE YOU WILL NEVER GET BACK TO WHERE YOU WERE PRE-GCA. AT ONE TIME THERE WERE OVER 3,000 CASES LIKE YOURS PER YEAR - PEOPLE GOING BLIND BECAUSE OF GCA THAT HADN'T BEEN RECOGNISED BY GPS. THE NATIONAL CHARITY AND ITS ASSOCIATED CHARITIES ARE WORKING HARD ON AWARENESS CAMPAIGNS BUT MANY GPS THINK THEY KNOW BETTER THAN THE PATIENTS WE TELL TO GO AND DEMAND PROPER CARE.
I MUST ALSO SAY TO YOU, THE REDUCTION THEY ARE USING SEEMS QUITE FAST - RECENT STUDY RESULTS, CARRIED OUT IN LONDON, SHOW THERE IS EVEIDENCE THE INFLAMMATION IS STILL THERE AFTER SIX MONTHS AT ABOVE 20MG PRED EVEN THOUGH THE PATIENT HAS NO SYMPTOMS AND THE BLOOD TESTS ARE NORMAL - AND YOU HAVE ONLY BEEN ON THOSE HIGH DOSES FOR THREE MONTHS. I HOPE THEY WILL LEAVE YOU AT 20MG FOR A WHILE NOW - BUT IF YOU DO GET ANY SYMPTOMS AGAIN PLEASE DO GO STRAIGHT BACK TO THE DOCTOR JUST IN CASE. IT IS BETTER TO HAVE A BIT TOO MUCH PRED THAN TO LOSE YOUR SIGHT ALTOGETHER.
i HOPE YOU CAN READ THIS, IT WOULD BE LOVELY TO HEAR MORE FROM YOU IF YOU CAN MANAGE - AND THANK YOU FOR THE SUGGESTION OF KWELLS FOR THE SWEATING. I WONDER HOW YOUR DOCTOR CAME ACROSS THAT IDEA.
ALL THE VERY BEST FOR THE FUTURE.
manymany EileenH
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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.
EileenH manymany
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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.
manymany EileenH
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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.
EileenH manymany
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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.
gail63312 EileenH
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manymany EileenH
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EileenH gail63312
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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.
EileenH manymany
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manymany EileenH
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mrsmop manymany
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Would you like me to use capitals?
manymany mrsmop
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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.
manymany mrsmop
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mrsmop manymany
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EileenH mrsmop
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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!!!!!!
manymany mrsmop
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mrsmop manymany
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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.
manymany mrsmop
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mrsmop manymany
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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
EileenH manymany
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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...