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

35 Replies

Next
  • Posted

    DEAR ANNA-MARIA - I'M SO SORRY TO HEAR YOUR STORY BUT UNFORTUNATELY IT ISN'T UNUSUAL TO FIND DOCTORS WHO HAVEN'T GOT A CLUE AND WHO ARE MORE INTERESTED IN SAVING THEIR BANK BALANCES THAN CARING FOR THEIR PATIENT'S PROPERLY.

    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.

    • Posted

      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.

    • Posted

      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.

    • Posted

      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.

    • Posted

      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.

    • Posted

      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
    • Posted

      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.
    • Posted

      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.
    • Posted

      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.
  • Posted

    How terrible Anna Maria, I'm glad you're having good care now.  I hope you have a good support system at home.

    Would you like me to use capitals?

    • Posted

      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.

    • Posted

      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
    • Posted

      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!
    • Posted

      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!!!!!!

    • Posted

      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
    • Posted

      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.

    • Posted

      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.
    • Posted

      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

    • Posted

      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...

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.