Steroid Questions

[sher]

Hi GK/Ckers,

I am having some swelling. I am trying to decide whether to take steroids. I have heard that some have felt that it really didn't help that much and I am supposed to start another med that really isn't supposed to be taken with steroids. Have the steroids done a much better job than Ibuprophen, or other over the counter anti-inflammatories? I am definitely experiencing enhanced dizziness.. more so than ever and inhanced tinnitus. The CK doc says it is up to me as to what I want to take. BLAH!!!!
Sher

[FAITH40]

SHER,

HI, I DIDN'T HAVE A CHOICE FROM MY DR.  RATHER TO TAKE THEM OR NOT HE AUTOMATICALLY PUT ME ON THEM, SO I JUST TOOK THEM. I CAN NOT IMAGINE THE PAIN, DIZZINESS, SWELLING ETC... THAT I WOULD HAVE HAD WITHOUT IT! I FELT GOOD AS LONG AS I WAS ON THEM, BUT THERE ARE DEFINATELY SIDE EFFECTS ...WHEN I CAME OFF THEM AFTER TWO MONTHS I HAD   TERRIBLE HEADACHES , GAINED 15 POUNDS AND STARTED HAVING THE WONKY HEAD REALLY BAD!    IT IS SYMPTONS VERSES SIDE EFFECTS (JMO) SO , IT IS A CHOICE THAT YOU WILL HAVE TO MAKE , AND WHATS BEST FOR YOU. I  DO KNOW THAT MY SUGAR STAYED UP THE WHOLE TIME I WAS ON THEM BECAUSE THEY KEPT A CLOSE WATCH ON IT, SO IF YOU HAVE SUGAR ALREADY I WOULD BE CAREFUL.

IT IS A GUESSING GAME SOMETIME BUT WE HAVE TO PLAY TO WIN!  GOOD DAYS ARE REALLY UP AHEAD!!  I FEEL FOR YOU!

GOOD LUCK DEAR!

TAMMI

[mk]

I don't know about the effect on dizziness, but steroids certainly reversed my sudden hearing loss and very loud tinnitus in a few days. I am pretty sure that ibuprophen would not have been effective for that. The ENT put me on a very high dose of prednisone for the (almost complete) hearing loss, but maybe if your symptoms are not so intense you might get away with a low dose of steroids.

Marianna

[sgerrard]

Hi Sher,

I think steroids are much stronger than ibuprofen, at least for controlling inflammation and swelling. It would be worth giving them a try, to see if it brings down the dizziness. Can you postpone the other medication for a few weeks? Steroids can't fix everything, so they may not help in your particular case, but trying them is the only way to know. As you know, they may have some side effect, and you can't take them for very long, but sometimes a short course really does wonders.

Hope you feel better soon.

Steve

[fbarbera]

Sher, You can read about my experience with steroids in the "Post-Treatment" section of my site (in my sig line).  They are far more effective than ibuprofen, which in my experience had very little impact on my symptoms.  For me, steroids had fairly intense side effects, such as insomnia, irritability, increased appetite and resulting increase in weight.  I gained 10-15 pounds during one 3 wk course of decadron.  The drugs are intense so take them with eyes open.  In retrospect, I feel ambivalent about these drugs.  On the one hand, I think they are very hard on the body and I wish I didn't have to take them.  But on the other hand, it was nice to have relief from the symptoms caused by the inflammation and by extension, it was encouraging to know that it was temporary inflammation causing all the unpleasantness and not something more permanent.  It's a tough call.  As with all meds, I would say avoid if possible but if not, that's OK too. 

The other thing I want to say is that all these symptoms will pass with time.  Please keep that in mind as you ride through these rough patches.

Best wishes,

Francesco
P.S. I did eventually lose all that weight after getting off the steroids.

[ppearl214]

Hey Sher,   

well, I'm kinda surprised that the doc is noting to pick your choice... rather surprised on that....

I've been on Decadron (steroid), Medrol Dosepak (strong steroids....Prednisone) and Ibuprofen, post-CK.  All for trying to manage the post-CK AN swelling.

As with any medication, all of these require physician supervision, esp. the steroids. Steroids, as Francesco noted, can have nasty side affects (trust me, my bloke was ready to brain me.. sorry for the pun... when I was on the Decacrap -- called that for a reason -- and the Medrol Dosepak... nasty buggers they can be).  I have also been on Ibruprofen (with dr supervision, as it can have GI upset side affects as well).

All of them, in one way or another, had some post-CK AN affects on me to help control the swelling... but as we know, "individual results may vary".  If me, I would ask the dr if an MRI is needed to confirm post-Ck swelling (if not done by now) for confirmation. If confirmed, ask him which, he feels, would be best for you and the kind of potential swelling you are enduring. Most of all, if steroids, he MUST monitor you.  Steroids cannot be stopped short and must be managed VERY carefully with the dr...  Some dr's have been noted to have patients on them for a week or less... some longer. Only he knows your true situation and if he does advise steroids for a length of time, then he must provide to you the daily dosage schedule, esp for weaning off of them.  Sudden stoppage of steroids can be most hazardous, so he needs to work this with you.  Most important.

Just my 2 cents... but you KNOW I'm sending you massive huggles. Hang tough. As you can see by this loverly gang... for each of us that have been through it.. .we are doing fine down the road.... looking forward to you saying these words as well!

xo
Phyl

[mk]

Sometimes swelling does not show on the MRI, but may still cause bothersome effects (Tumbleweed once called it "internal swelling"). Usually the doctors judge by the symptoms and prescribe steroids accordingly.
As everyone has pointed out, there may be many different reactions to steroids. Both times that I was on a high dose, I had minimal symptoms. Certainly for me, any side effects were worth their benefits. Of course any prolonged use must be avoided, because they can also have nasty long term effects and as everyone else pointed out, the weaning dosage prescribed by the doctor must be followed.
Since your doctor doesn't insist, probably he is not too worried about substantial swelling. I would say that if you can get away with some ibuprophen, then go for it, otherwise if you really feel miserable you could use a short course of steroids to get some relief.

Marianna

[sher]

Thank you everyone! I am scheduled for an early morning MRI this monday... so we shall see what is decided with the steroids.
I am pretty miserable and have NEVER been this dizzy. Did you have massive fatique? My body wants to sleep 10 hours. I have a hard time getting to sleep and wake up a couple of times, but then in the morning I can hardly open my eyes. Weird.....
Have any of you had that kind of fatique?

[sher]

sometimes I just get paranoid that I just won't wake up one morning...

[ppearl214]

sher,

As I noted in your MRI thread...... you are in a timeframe (just a few months post-radio) that things may or may not crop up. We only share here exeriences and knowledge as best as we can.  You have done extensive research and please keep in mind that, based on this timeframe, yeah... these things may happen... or not.  You are doing everything right, keeping in close communications with your team and doing what is necessary to be well.  Fatigue, as you have learned, is not only part of post-treatment (any form) but also part of the AN journey.  I know of some (myself included) that did experience some enhanced issues (ie: fatigue, dizziness, etc) post treatment.... but as you can also see, many of us have done very well post-treatment.  Please remember to take each day... day by day... we have our good days and we have our not-so-good days (for many)..... know that we are all here to help you stay strong..... to loan our shoulders and good ears... give those huggles to help you get through this.

Let us know what the dr says... and how you are doing.... "day by day, inch by inch...."... you can do it.

xoxo
Phyl

[Jim Scott]

"day by day, inch by inch...."... you can do it.

I agree, and I hope Sher can find an acceptable solution to her dilemma, asap. 

'Yard by yard it's hard...inch by inch, it's a cinch'. 

Jim

[Nancy Drew]

Hi Sher,

The fatigue comes and goes for me.  I have noticed it more lately, but it might be some post viral thing I am dealing with right now.  I took the Prednisone taper for six days about three weeks after GK.  I wanted to eat everything, got cranky, depressed and had sleep problems.  But, I have heard some people have no problems with the steroids.....maybe rare, I don't know???  I am having some weird sensations going on in my head that the doctor can't explain so I am having a MRI next week to see if there is any swelling.  If so, the doc said steroids might be needed.  Best of luck with your MRI.  The most important thing is to stay on top of things!  Sounds like you are doing what you need to do.  Hang in there.

Nancy

[GM]

I was on prednisone once...great stuff, cleared up the full fealing and other issues with my AN ear.  The bad part was the side effects!  Man did I feel squirelly.

[BDB]

Hi Sher,I had bad expierience with Decadron for a couple months last summer,I was horribly fatigued,my face and back bloated,was really crabby etc.But my facial spasms were gone.I believe most people feel energized from steroids,I did not,I just felt sick and tired,and stopping them wasn't fun.But if you have swelling,I believe they are a necessary evil.For whatever reason I had problems after having CK,Im'now about 11mos.out,feel pretty good most of the time,but for whatever reason,I'll go thru a peroid of a few days,or week or so where the ringing in my ear and the AN side of my head feels almost as if its swollen or something,just feel strange.

But all in all,I can't complain,so hang in there,I know there can be some rough stretches,which we hadn't anticipated,but things DO get better!

Bruce