How Quickly Did Your Symptoms Subside After Taking Methylprednisolone?

[betweeniandk]

Hi.  My name is Jay.  I just completed my Cyberknife treatment yesterday.

After I finished the first of my three days of treatment, I noticed an onset of tinnitus, an increased pressure in my ear, and a marked decrease in hearing.  That has maintained for the past three days.  I passed that information along to my medical team, and they suggested that I try a six day round of methylprednisolone, to help reduce the swelling they think might be causing the symptoms, which were not present prior to treatment.

For those of you who have gone this route, how quickly did your symptoms subside after the steroid treatment?  Might I expect to feel a significant difference during day one, or is it more realistic to think that the symptoms might not subside until after all six days of meds are taken (or even longer than that).  Did any of you take the treatment, and find that it had no effect at all?

I am aware that things are a bit different for each patient, still I am looking for a perspective on if the pressure, tinnitus, and hearing changes might go away using this treatment, from people who have been there.

I've been checking out the forum behind the scenes for a while, and am grateful for the information you have shared.  Thank you for your help.

[producer]

Hi Jay, I completed my 3rd day of CK just yesterday too (!) 

Luckily i havent had any changing of symptoms at all as yet, maybe a 10% increase in tinnitus but nothing really worthy of note.

BUT.. they did give me a 3 day cycle of dexamethasone on first day of treatment so that may be why i havent experienced any side effects. 

To answer your question,  I have gone on prednisolone twice in the past year and on  both occasions my hearing improved within 24-48 hours on a fairly high dose...approx 60mg


What dose are you on?  I had found during my cycles that below 30mg per day would cause my hearing to go again..  sotheres definitely a 'right' dose for each person at any given time.


Keep in mind that most side effects which were not present prior to to treatment are more than likely to be transient.


What size is your AN? Do you know what total dose you received?


good luck to both of us!


chris

[BeckyMax]

I'm currently on Prednisone after shl in my AN ear, no related to any treatment, certainly not GK or CK, but I can say that it took about 3 days for it to s.tart working on me.

Keep us posted.

Becky

[betweeniandk]

@Becky | I had to look up SHL (thanks Yahoo! Search d:-) and it is encouraging to know that my Sudden Hearing Loss might abate after a few days on this medication.  Just before my treatment, an audiologist recorded my hearing in my affected ear at a little better than 90% & I don't think that it's a stretch to say that post Cyberknife, it jumped down to about 30% which, after four years diagnosed, was a huge surprise.

@Chris | Funny how people sometimes end up at the right place, at the right time, huh Rads Twin?    I am glad that you haven't had any adverse side effects yet, and hope that your tinnitus decreases from here on out.  A 1-3 day turnaround in my hearing would make me feel great.  Looks like my does of methylprednisolone starts me off at 24 milligrams on day one (which will be today), and tapers off at 4 mg a day for 6 days.  I read online that a 4mg dose of my medication is equivalent to 5mg of prednisolone, so looks like I am starting at the equivalent of your 30mg dose.  Were you sharing that as long as your doses were at that level, or higher, your hearing was improving, but after that time it got worse again?  I'm interested in how that played out for you.

I updated my signature with my treatment stats, so I could be like the rest of the cool kids on here.  Thanks to you both for responding.

[producer]

Hi Jay..

I wouldve thought theyd put you on a slightly higher dose to be honest, for SHL ive read that a solid dose is about 1mg per kg of body weight to really reduce inflammation and hopefully restore hearing.

In my case as soon as I started at 60mg of prednisolone I noticed my hearing improve both in volume (PTA) and distortion/clarity (speech discrimination)..  Further week at that dose didnt really continue improving my hearing any further..but it had made a big difference because it meant I could very succesfully use a hearing aid! 

The main advantage of the steroids on my hearing were that they reduced distortion!  Then I could use a hearing aid!

Then as I tapered down the hearing stayed the same BUT as soon as I dropped to around 25mg per day i noticed the hearing worsen again, within a day..  Ofcourse you cannot just continue with steroids indefinitely so I just had to accept that I gave it a good try but steroids were not a permanent solution.


Is your AN in the IAC Jay?  I have found many people with an intracanalicular AN notice symptoms worsen once the AN hits around the 1cm mark.. This probably has to do with the fact that the average IAC is around the 8mm - 10mm wide, which makes sense since once a tumor gets bigger than that more pressure would be put on the nerves..  Its a different playing field for CPA tumors (outside the IAC).

If the steroid isnt working for you I would suggest that maybe you request a higher dose from your physician?  Just my opinion based in my experience ofcourse..  30mg wasnt reducing inflammation enough for me.


Let me know how you getting on Rads Twin   I'll do the same..


Becky, interested to know if your cycle is working for you??



chris

[BeckyMax]

Chris, my experience is very similar to yours.  I started on 60mg / day for 9 days, then dropping by 10 mg each day until none.  Today, day 11, I'm on 30 mg, tomorrow will be 20, then 10 on Sunday to finish up.

Although I noticed improvement around day 3, by about 7 it leveled off and now I am declining slightly.  As was the case with you, the distortion isn't as bad, so I feel I can live with this if its the best it gets.  I had some hypersensitivity to sound in the beginning, and I'm experiencing that again, but not to the same extent.  I do put in a silicon earplug if I'm going to be in a loud environment, such as a restraunt, or when I'm using the hair dryer in the morning.  Tinnitus is always there, has been since just after diagnosis, it ramped up with the shl, then improved and is now a coming back again stronger, but again, nit as bad as the first day.  I'm anxious to see what happens when I finish these steroids.  I've read about injections into the ear, but find there is not much evidence they are any better than oral steroids, and cost about $700 each, usually 3 shots a week apart.  If my insurance will pay, I'd be willing to try that.  Which reminds me, gotta go see where i stand on my maximum out of pocket, I've already met my deductible. 

Becky

[betweeniandk]

@Becky | One of my friends has tinnitus, unrelated to an acoustic neuroma.  Last year she had a series of those shots, and found them not to be helpful, so be sure to do your research before moving forward with that plan.  I am having the sound hypersensitivity as well, which is an annoying compliment to the ongoing tinnitus.  But if I keep Hearos Pearls Silicone Ear Plugs in during the day, it seems to lessen both.   I have an appointment with an audiologist to discuss tinnitus/hearing aids on Monday, so I am hoping that helps as well.  Becky, since you were diagnosed so recently, have you decided on a treatment yet?

@Chris | Yes, my tumor is confined to the internal auditory canal.  I think the gameplan of my medical team is for me to try this Medrol first, and if it doesn't help to move to the Decadron, as both are listed as medications to be used to help treat side effects post treatment.  I am hoping what I am on now does some good, because I'm not liking the side effects linked with Decadron.  It's just been 24 hours, but I'm not noticing any change.  Chris, how soon after (or before) diagnosis did your hearing loss start?  How was it before Cyberknife?  Was this week your first time on the Decadron?  Did you notice any side effects?  & where do you happen to be treated, if you don't mind sharing?

Best to you both.

[producer]

I did try an intratympanic injection of dexamethasone but was unsuccesful in my case.. 

To be honest though, i felt half the injection drip down my throat (supposed to stay in ear)  so that may have had something to do with it! 

[BeckyMax]

Saw the doc yesterday, my hearing test came back better than expected, word recognition at 80%.  I would have guessed my be 70%, but pleased it was higher.  Pure tone was also much improved.  I would consider the steroids a success.

Becky

[betweeniandk]

Once I finished my 6 Days on Medrol, my hearing gradually returned to where it was pre treatment, and the tinnitus stopped as well.  My radiation oncologist noted that if there are any future flare ups, Decadron might be prescribed, but since the Medrol seemed to work well, we might start there.  I am glad that the steroids did some good for each of us at some point.  Here's to hoping that they never need to be long term solutions.

Best to you both.

[sunfish]

Thank goodness!  I'm glad your hearing levels are hanging in there!  This is why it's important to get to an ENT if you notice a decrease, so they can try to help.  It worked in my case, too.

[producer]

@Chris | Yes, my tumor is confined to the internal auditory canal.  I think the gameplan of my medical team is for me to try this Medrol first, and if it doesn't help to move to the Decadron, as both are listed as medications to be used to help treat side effects post treatment.  I am hoping what I am on now does some good, because I'm not liking the side effects linked with Decadron.  It's just been 24 hours, but I'm not noticing any change.  Chris, how soon after (or before) diagnosis did your hearing loss start?  How was it before Cyberknife?  Was this week your first time on the Decadron?  Did you notice any side effects?  & where do you happen to be treated, if you don't mind sharing?

sorry Jay I had missed this part with your questions.  Hearing loss was the reason for my finding the AN.  Prior to CK it was good till about 1khz and then a steep curve down..  Word discrimination about 70%  Please note I didnt take Decadron, all the info I provided in thsi thread was referring to Prednisone!  No side effects whatsoever from the Prednisone.

I was treated at the Royal Marsden in London.

I actually woke up this morning and noticed my hearing was muffled, ie the higher frequencies above 1khz had dropped a lot so i went to my physician and he put me now on a 5 day of Dexamethasone which is supposed to work better on radiation induced  inflammations..  Lets hope it helps!

When you said that straight after your CK treatment you noticed a marked decrease in hearing was it an overall loss or in the mid or higher frequencies??    HOw are you doing now?


best


chris

[PaulW]

My hearing declined within 24 hours after CK, tinnitus increased and balance was pretty average too.
My doctor was happy to prescribe steroids but said from his observation that giving steroids or not did not change the long term hearing outcome after radiosurgery for AN. I chose to not take steroids, and my hearing improved over the following weeks and nearly 2 years later my hearing is better than pre treatment.

I had a bout of sudden hearing loss a few months ago, decided to take prednisilone for 10 days, hearing started to return within 12 hours, and came back fully within 2 weeks