HELP! NEURO DENIED STEROID TAPER AFTER IVSM

[Sarahsmom46]

GOOD MORNING EVERYONE.  SORRY ABOUT PUTTING THIS IN CAPSE, BUT I AM RECOVERING FROM OPTIC NEURITIS AND FIND THAT I CAN SEE BETTER WITH CAPS.  :)

I HAVE A DILEMMA THAT I NEED YOUR HELP WITH, HOPEFULLY.

I HAVE HAD SOLUMEDROL SEVERAL TIMES SINCE MY DX WITH MS.  I HAVE HAD TAPERED STEROIDS AFTER COMING OFF THE IV SEVERAL TIMES. THE 2 TIMES THAT I WAS NOT GIVEN THEM I HAD BAD REBOUNDS SIDE EFFECTS WHICH ARE DOCUMENTED IN MY MEDICAL/HOSPITAL RECORDS.  I'VE HAD BONE CRUSHING PAIN IN MY LEGS THAT REQUIRED STRONG NARCOTICS TO CONTROL IN ONE CASE AND SEVERE WEAKNESS WHERE I COULDN'T LIFT MY ARMS AND COULDN'T WALK IN ANOTHER.  IT DIDN'T MAKE A DIFFERENCE IF IT WAS A 3-DAY OR 5-DAY COURSE WITHER.

NOW MY NEURO WHO SAYS "NO" TO A TAPER DOSE AND ITS THE WEEKEND.  I DIDN'T KNOW ABOUT HIM DECLINING THIS UNTIL LATE YESTERDAY (FRIDAY) AFTERNOON WHERE HE HAD ALREADY LEFT FOR THE WEEKEND.  

WHAT DO YOU THINK I SHOULD DO?  THE THOUGHT OF WAITING TO SEE WHAT HAPPENS IF CAUSING ME A LOT OF ANGST AS THE PAIN IS SO TERRIBLE AND COMES ON SO QUICKLY THAT I DON'T KNOW IF I WOULD BE ABLE TO GET MEDICAL HELP ON MY OWN.  A FRIEND SUGGESTED CALLING THE ON-CALL PHYSICIAN AND GETTING THE ORAL STEROIDS IF POSSIBLE BEFORE THE REBUNDS HITS WHICH HAS TYPICALLY BEEN 24-48 HOURS AFTER MY LAST INFUSION, WHICH IS TODAY.  

I'M JUST AT A LOSS HERE AND WOULD APPRECIATE ANY SUGGESTION YOU ALL MIGHT HAVE.   HAS ANYONE ELSE HAD BAD SIDE EFFECTS AFTER IVSM OR AM I JUST AN ODD DUCK?

THANKS SO MUCH.

JULIE

[Sarahsmom46]

My neurologist said the same thing.  He said the longer you take in coming in to initiate treatment, the longer it will take to for the recovery of vision.  I came in within less than a week after symptoms (thought it was initially just an eye infection), and my vision is soooo much better, less blurry and the pain responded within 24 hours of my first IVSM infusion.  Had a little pain come back from the rebound relapse, but that cleared up quickly too with the additional 2 days of IVSM that were ordered.

I am so relieved about the vision.  There is nothing worse than already being legally blind and the possibility of losing whatever vision I have left in that eye.

Julie

[Quixotic1]

Hi, Dee Vee,

Yes and No.  I am never ambivalent.

Yes, the symptoms and subsequent return of vision will often be hastened and even improved in the short term over letting time take whatever course it will.

However, the ONTT, Optic Neuritis Treatment Trial which took place with a huge number of patients over a period of 18 years, was pretty definite on the fact that treated patients compared with untreated controls had no advantage in the "long" term vision outcomes.

That's what I based my comment on.

Quix

[doublevision1]

Quix - as you said, I had always understood that steroids shorten the symptoms of a relapse but don't change the ultimate outcome/degree of improvement.  I understood that this applies to any type of relapse - brain, spinal and/or optic nerve involvement.

However my neuro-opthalmologist commented that it's possible that my ON resolved not only so quickly - within a few days - but also, so completely - no apparent permanent damage, vision returned completely to normal - because IVSM treatment was initiated the same day as onset of symptoms.  I discussed this with my neuro, and he agreed, it is possible my recovery was better than it might otherwise have been, because I had the IVSM treatment so quickly upon onset of ON symptoms.

Thoughts???

[Quixotic1]

Me - wagging a finger....I had better not hear tell of you in a hottub, lady.  You know that a very occasional person who dabbles in heat (voluntarily or not) can cause themselves permanent damage.  A case or two of permanent blindness and paralysis is why they don't use the Hot Bath Test in diagnosis anymore.  (Can anyone say "Malpractice"?)

And all should remember that while steroids shorten the symptoms, they do NOT change the ultimate visual outcome after Optic Neuritis.

Anyway, Khiba, good to see you again!

Quix

[Khiba]

JULIE,

I GOT A DIAGNOSIS OF OPTIC NEURITIS TOO LATE TO MERIT ISVM OR ANY STEROIDS AT ALL. I HAD TO WAIT OUT THE HEALING PROCESS WHICH TOOK A FEW MONTHS TO GET MOSTLY BACK TO NORMAL. SO WITH STEROIDS YOU SHOULD BE GOOD TO GO IN A COUPLE WEEKS!

MY SIGHT CAME BACK IN FITS AND SPURTS AND FINALLY HELD UP ON ITS OWN. BY 4 MONTHS IT WAS JUST FINE AGAIN. STILL WHEN I GET OVERHEATED, LIKE IN OUR 100 DEGREE SUMMERS OR IN A HOT TUB, I LOSE CONTRAST AND GET MUDDY VISION UNTIL I GET COOLED OFF BUT THAT IS ALL.

HANG IN THERE AND LET'S HOPE THE WITHDRAWAL ISN'T GOING TO BE BAD. AT LEAST YOU GET TO SEE YOUR DOC AGAIN TOMORROW. :)

[Udkas]

HI JULIE,
SORRY TO HEAR YOU ARE HAVING SUCH A BATTLE.

JUST SENDING YOU HUGS AND HOPING THAT PAIN DOESN"T KICK IN!

[twopack]

GLAD YOU ARE SURVIVING WITHOUT PAIN JULIE.  MAYBE YOU WILL FIND OUT THOSE PAST REACTIONS WERE A FLUKE.  I DENIED MYSELF BIG JUICY SHRIMP ON VACATION YEARS AGO BECAUSE THEY WERE THE ONLY UNUSUAL THING I'D INGESTED BEFORE DEVELOPING HIVES. SOON AFTER THAT I ADDED LODINE, DOLOBID AND RELAFEN (THREE NSAIDS) TO THE 'CAUSES HIVES' ALLERGY LIST.

NOW THAT I'VE ADDED INFLAMMATORY ARTHRITIS TO MY MS DIAGNOSIS AND HAVE AUTOIMMUNE THYROID DISEASE WAITING IN THE WINGS---THOSE HIVES FROM NSAIDS LOOK DIFFERENT.  THEY LASTED QUITE A WHILE AND ENDED WITH A CASE OF  DERMATOGRAPHISM.  I'VE NEVER HAD ANOTHER CASE OF HIVES SINCE THEN.  CONSIDERING I TRIED NO LESS THAN FOUR Rx STRENGTH NSAIDS BACK THEN THERE'S AN EXCELLENT CHANCE I WAS HAVING JOINT PAIN BESIDES!  SO i'M THINKING THERE'S A GOOD CHANCE THE AUTOIMMUNE DISEASES I HAVE TODAY WERE BREWING BACK THEN.

THAT CONNECTION LOOKS PRETTY LOOSE AND BACKWARDS AS I APPLY IT TO YOU.  SINCE YOU DECIDED TO CHARGE ON AS IF THERE WILL BE NO PROBLEM I AM HOPING YOU FIND OUT YOU NEVER NEED THE TAPER AGAIN.  IT WOULD SURE MAKE THINGS EASIER.  AT LEAST YOU'LL BE AT THE OFFICE IN THE AM AND HAVE ACCESS TO WHATEVER YOU NEED (WELL, MOSTLY).

UNFORTUNATELY, I DON'T THINK THERE IS A TIMETABLE FOR RETURN OF VISION AFTER ON.  STATS JUST SHOW FASTER RECOVERY WITH IVSM THAN PREDNISONE OR NO TREATMENT.

WILL YOU BE ABLE TO TAKE A FEW DAYS OFF AND REST YOUR EYES AS WELL?  OR MAYBE YOU PREFER TO GET BACK TO THE ACTION?-----OOPS, YOU ANSWERED THAT.

SURE HOPE IT GOES WELL FOR YOU AND YOU ARE BACK TO WORK AND YOUR REGULAR ROUTINE.

Mary

[Sarahsmom46]

THANKS FOR THE FEEDBACK YOU ALL GAVE. IT WAS MORE HELPFUL THAN YOU CAN IMAGINE.  AND THANKS QUIX FOR POINTING ME TO THE HP YOU DID ON STEROIDS.  IT WAS EXTREMELY INFORMATIVE.

I AND NOW ALMOST 24 HOURS OFF MY LAST IVSM. THE HOME INFUSION WENT WAY BETTER THAN I EXPECTED, WHAT A RELIEF COMPARED TO THE LAST TIME I DID IT ON MY OWN.  

I'M HAVING THE POST-STEROID MANIA MASSIVE ENERGY THING GOING ON NOW AND AM TAKING ADVANTAGE OF THE ENERGY WHILE I HAVE IT AND HOPE NOT TO OVER DO IT.

I'LL KNOW IN THE NEXT 12 -24 HOURS IF I GET THE BAD REBOUND RLEAPSE THAT HAD OCCURRED IN THE PAST.  I AM TRYING NOT TO FOCUS ON IT AND AM HOPEFUL THAT MY BODY DECIDES TO COOPERATE AND GIVE ME A BREAK THIS TIME.  I SEE MY NEURO TOMORROW AFTERNOON ANYWAY.  AGAIN, I AM HOPEFUL THAT THIS WORRY WILL BE FOR NAUGHT AND ALL WILL GO FINE.  I JUST CAN'T MISS ANY MORE WORK FROM THIS.

MY VISION IS A LITTLE BIT BETTER WITH GLASSES TODAY, BUT STILL SO BLURRY THAT I AM STRUGGLING TO SEE THE COMPUTER.  HOW LONG DOES IT TAKE TO GET MY EYESIGHT BACK?  

JULIE

[doublevision1]

What Quix is saying is consistent with my neuro's position on the taper.  He said that the research indicates it is unnecessary for most patients, post-IVSM infusion.  Of course if you're not like most patients and have a history of problems without the taper, it should be pursued.  Hope you make it through the weekend OK.

[anon07072023]

I think you should call the on-call doctor to see if you can get a taper dose, since you have a history of ill-effects when you don't do it.  

I always have bad side effects during IVSM to the point that they've pulled me off early both times.

Good luck,
Kelly

[Quixotic1]

HI, HON, GOOD TO SEE YOU BUT NOT WITH SUCH A PROBLEM.  SINCE YOU HAVE A HISTORY OF SEVERE REBOUND SYMPTOMS YOU SHOULD GET AHOLD OF THE DOC-ON-CALL AND EXPLAIN THE SITUATION.  YOU MIGHT MENTION THAT YOUR DOC MUST HAVE FORGOTTEN YOUR PARTICULAR HISTORY.  

IF YOU CAN'T GET ANY HELP OVER THE WEEKEND, IT'S PROBABLY OKAY.  THE LEVEL OF STEROIDS FOR THE FIRST FEW DAYS AFTER A TAPER IS FAR GREATER THAT YOU WILL GET WITH THE USUAL ORAL TAPER.   SO YOU HAVE A TIME CUSHION TO GET THEM.

IF YOUR DOC HAS A REASON FOR NOT USING THEM HE NEEDS TO DISCUSS IT WITH YOU IN DETAIL.  

SARAH - YOU HAVE BEEN MISINFORMED ABOUT THE NEED TO TAPER STEROIDS AFTER EVERY PULSE.  MUCH RESEARCH AND CLINICAL EXPERIENCE HAVE SHOWN THAT EVEN PULSES UP TO TEN DAYS DO NOT REQUIRE TAPERING THE DOSE DOWN.  HOWEVER, THE OCCASIONAL PERSON WITH PARTICULARLY ACTIVE DISEASE, WHETHER IT BE ASTHMA, MS, RA OR WHATEVER, WILL SHOW REBOUND SYMPTOMS AND REQUIRE THE TAPER WITH EVERY PULSE.

THE VAST MAJORITY OF PEOPLE WITH RRMS THAT GET 3 OR 5 DAY PULSES DO NOT TAPER DOWN.  IN MY EXPERIENCE (WHICH INCLUDING POST-DOCTORAL WORK IN ASTHMA AND IMMUNOLOGY) I FOUND A LOT OF DOCTORS ARE MISINFORMED ON THIS POINT.

i WROTE A HEALTH PAGE ON THIS AND OTHER PROBLEMS WITH STEROIDS:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Steroids---Friend-and-Foe/show/365?cid=36

HOPE THIS HELPS.

QUIX

[SarahL2491]

I've always been told its dangerous to stop steroids cold without a taper dose.
are you in hospital having this done?  if so there is always a patient advocate on call
if not and are at home, I would find an ER...........you need professional advice, this does not sound normal, but I am not a doctor, for sure