question re: duration of solumedrol for optic neuritis

[doublevision1]

Have any of you cut short a treatmernt plan of solumedrol because of quick resolution of a flare?  I had a sudden and excruciatingly PAINFUL attack of optic neuritis that started up this past Tuesday.  By early Weds a.m. I was at Emerg getting treatment.  ER doc started me on 5 day course of IV steroids.  Tonight I am due for my third round.  The pain is nearly gone, and my vision in my left eye is much better, just a bit blurry, no longer milky and cloudy.

With such a speedy resolution, which I knew was possible but was doubtful I'd be so lucky!, I wonder if I should suggest stopping at 3 infusions, given the longer term risks of repeated use of IV steroids.  I will probably see a different ER doc tonight.

I see my GP on another matter today and will ask her opinion, but am always interested in the actual experiences and views of those who have been there themselves.

I'll bump up my other post for the details of this attack.

thank you so much!

[Quixotic1]

I think I included a discussion of when there is a need for an oral taper in my Health Page "Steroids - Frined and Foe."  The two main reasons for a taper are 1) when a person is known to have a bad "rebound" return of there symptoms as soon as they stop the infusions and 2) when a person is known to be steroid dependent and has symptoms of adrenal insufficiency when the infusions end.

But, you might read that health page.  It is incomplete, but I will get to finishing it.

Q

[doublevision1]

Thanks all, for your comments and feedback.  I did end up going with the full 5 days of solumedrol, last infusion was last night.  The feedback I got from my GP on this was similar to Quix's comment.  GP felt I should do the full 5 days and not cut it short, since I don't have bad side effects from the treatment.

I'm feeling so much better, a bit hopped up on the steroids which is probably good as today is my first day back to work since my 2 week vacation.  ON while on vacation, no fun!!  I'm just so glad that the ON did not hit while I was in Seattle.  I was not very conscientious in checking out my emergency medical insurance, I think i'd gotten complacent that I'd gone almost 9 months without a flare, and I was only to be out of the country for 4 days.  however if the pain had hit me there, I would've had to go to the ER before I could have boarded a plane back to Canada.  I guess I would have had to pay out of pocket at the hospital and sort the rest out when I got home, and maybe be out the money?  I will have to be more planful next time.  

Rena, to answer your question, I've never done the oral taper.  None of the docs I've dealt with recommend it for me.  They don't see any benefit.  Perhaps because of my lack of side effects from the IV?  I wonder if there are standardized treatment guidelines, ie: when to go with a 3, 5, or 7 day course of IV based on symptom severity and/or location in the CNS of attack; when to taper, when not to?  Does anyone have any info on this?

[Quixotic1]

There is essentially no greater risk of 5 than 3 days of the steroids and the 5-day is the more common course for acute, painful ON.

I would go the whole course.  Too many people abandon the course of meds, including antibiotics, as soo as they feel better and sabotage the treatment.  

My opinion only of course.

Q

[Lulu54]

I have no personal experience with the steroids either - I just want to say that its good to hear someone talk positively about their experiences with the doctors.  I'm glad you have a good group way up north.  

Good luck with the Christmas cards - I did mine this afternoon and dropped them at the post office tonight.  It feels good to cross things off our lists.

Feel better, Lulu

[Rena705]

Hey girl...long time no talk to!  Sorry to hear of this trouble you have been having with your vision but I am glad that the IV Solumedrol seems to be doing the trick.  Are you going to be weaned off with Prednisone?  That is the usual course for me...at least that is what both the evil neuro and Dr. W. did and it seemed to work.  You are lucky if you don't have any side effects from the steroids cause they are incredibly unpleasant and I am still fighting off the weight from Feb. 2007!!!  At least this happened before the holidays so hopefully you will be feeling fine by the 25th!  I understand how you are feeling about losing control over your own body...it's just damn scary and I have to agree that it can certainly swing a heavy blow to one's self confidence and can emotionally really throw you for a loop.  You are completely correct in saying that it "really *****!!.

Hope you are feeling back to your old self and that you are able to enjoy Christmas...just make sure you don't overdo and take advantage of any offers of help...and enjoy your holiday ok?

Lots of Hugs,

Rena

[doublevision1]

Thank you for the nice words, Kathy.  Yes, I'm very lucky to have the support I have at home, and also to have consistently terrific medical care, esp in such a remote northern locale.  

I went back to Emerg last night for infusion #3.  I am doing SO MUCH better than Tues/Weds, thankfully.  After some discussion with GP yesteryday morning, I've decided to do the full 5 day course of IV steroids.  She said in her experience, a range of 3 - 5 days is typical, and it is a judgment call made by the attending doc based on severity of symptoms, whether the relapse is considered moderate or major, the patient's tolerance for this treatment, etc.  I certainly presented with severe symptoms at Emerg, the pain was truly excruciating.  I'm so grateful that I responded so quickly to the treatment; I'm not sure how much longer I could have tolerated such intense pain.  Since I don't suffer terrible side effects from the steroids, I'll do the whole course and hope to get an extra boost.  I have no more pain now, just mild blurriness in my left. eye.  I managed to get an appt on short notice with my regular ophthalmologist for this Monday, after I'm done the 5 days of treatment, so I'll get a thorough evaluation of my vision and what kind of immediate impact this attack may have had.

For now I'll enjoy the extra energy I'm getting from the solumedrol, and maybe get all those Xmas cards off finally!  

These sudden attacks that strike so violently and leave you feeling so out of control over your own body are such a blow to one's self-confidence.  I hate feeling so vulnerable and emotionally raw.  Perhaps that's an even harder aspect of this disease for the non-afflicted to grasp, than the physical symptoms themselves.

Really s u c k s, doesn't it?

[Fluffysmom]

I don't have any experience with ON  or IV steroids, sorry.

I just wanted to let you know how happy I am that you are so much better.  I read your post about your nasty attack of ON, and really felt for you.  I'm so glad you have such a wonderful husband to help you out, and that the staff at the ER were so gentle and understanding and quick.

Take care,

Kathy