Remind me what the steroids do...

[saywhat]

Do they just help the symptoms go away? Stop the active lesion from getting bigger? I can't remember, but I DO remember that I didn't want to do steroids again unless I was REALLY miserable with symptoms.

If I DON'T do the solumedrol, what are the risks?

At this point I'm not miserable enough (other than sheer panic about more progression) to endure the steroid induced ulcers, insomnia, diabetes, etc. But I'm also very worried about these new symptoms and want to stop any new lesions from getting worse, if that's what the steroids do.

[0485c10]

Here's what i think they do & i had to go through in my mind why & why not their used.

back ground: i really hated steroids for how emotional they made me. i vowed never to use them again. i read so much that they are not needed, but i had 2 doc's with easy going personalities that were adamant i use them on 2 occasions, even when i expressed how much i didn't want to.

Steroids definitely have an OPTIMAL: Too much can be used and too little also.

Steroids reduce inflamation.

streoids weaken bones and teeth, mess with blood sugar and become ineffective after repeated use.

the symptoms of a relapse are caused by inflamation impinging on the nerve and reducing or stopping conduction.

steroids reduce inflamation sooner, and reduce the length and severity of the relapse symptoms.

but the body will do this on it's own if a person is willing to wait for the body to do this. no studies have been shown that the final affect is better if steroids are used or not used. Except of optic neuritis where there are studies that have shown that a person not using IV steroids to stop the attack sooner will have a repeated episode sooner than if IV steroids are not used...

my doc's being so adamant sometimes??? i had to understand that. once was for optic neuritis, so that is easy to understand.

the other time was less easy to understand, when my left leg stopped working. i was willing to wait it out to avoid steroids. and my doc was an easy going guy, why he was insisting on my strong objections???

the best answer I found on this.. ms is a disease of demylenation and then remylentation in the RR phase. MS demylenates. The olig. cells, then remylenate. causing the remission part.

the olig. cells are located on each individual nerve. and the longer these olig. cells are under inflamation, the more they will become damaged until they do die and it is no longer RRMS but SPMS.

so steroids reduce the inflamation sooner, reduce the olig cell from being damaged by inflamation. the damage does not appear to affect the recovery from THIS relapse, but may negatively affect the ability to recover from future relapses.

so in my mind, i still dislike steroids. There is an Optimal., i think steroids for ON and if that nerve has been under inflamation in the past(if ther has been a past relapse with that nerve). i try to regulate how much time my nerves spend under inflamation. i figure once is ok but after that i reduce the inflamation faster with steroids.

Website with diagram of nerves with the olig. cell on them.

http://www.mult-sclerosis.org/howms.html

[jenphilly]

Well, my smart aleck response is...

Steroids make you gain weight and lose sleep...

The steroids won't affect the progression of MS, just helps with reducing the impact of a flare.

Are you still using Avonex? If so, how long and are you still having regular flares? If you don't think the Avonex is working for you, talk to your neuro, see if one of the other DMDs might be an option.

Good luck!

Jen

[Keepin_on]

Hey shutterbug!

The previous posters covered what steroids do really well. My doc only likes to use them if I am going through a relapse that is really impacting daily activities (ON, paralysis, etc). Otherwise, I would just push through it. Steroids have their own risks and side effects

Before DMDs were available, people with MS were using steroids constantly for managing their MS and symptoms. Much more than they are used today.

Are you having symptoms on their own or are you having a relapse? If you are left with symptoms from your last relapse or they have recently appeared, you should talk with your doctor. If you are not having a relapse, they can help you treat your symptoms.

If it is fatigue, there are meds and holistic approaches to manage. There is help for spacicity and pain. Basically, I couldn't tell if the symptoms you are speaking of are from a relapse or are a daily thing for you

I know my last relapse left me with some symptoms that have slowly became better (even the fatigue) each day since last summer (when my relapse occured). So things may get better but you may need to symptom manage now with your doctor.

Hope you are feeling better

[saywhat]

Thanks for all of the information! I am relapsing again, never felt like I remitted from my last flare 4 mos ago. My right leg was feeling numb/tingly and a lot of pressure on it. IDENTICAL to how my arms felt first flare. Also numb parts of my feet/toes. I waited it out 24 hours. Tried to get ahold of my neuro, have to go through 50 people and ultimately leave a voicemail for the medical assistant who takes a month to call back. Opted to head to the ER.

ER physician said Avonex is obviously not working, called the neuro who wanted to see me in the office. ER discharged me to the neuro. Then the neuro didn't even see me, the PA did. (I HATE THIS OFFICE, but it's the only MS clinic here.)

She did a neuro exam and ordered 2 days of solumedrol. Just had my second dose today. Blah. I feel like this neuro (or the PA) doesn't even care about me.

I had to have 7 doses of solumedrol the first month of my first flare. Never did get back to normal. NOw another relapse. I am freaking out. Terrified. But the doctors don't seem to give a crap. "Call us in 2 weeks if you aren't feeling better by then." Right. Because I can't get a da** person on the phone, or anybody to return my calls anyway.

Leg numbness is gone but I still feel like there is a massive piece of tape or something, stuck on the bottom of my foot. Blah. I have my 6 month MRI (he ordered brain only, even though I have a known lesion on my c-spine ) I won't be shocked to see new lesions, I really won't. I'm scared out of my mind. Blah.

[Johooper]

Firstly the first year after DX is the worst, I was up and down in and out not sure what was going on seemed to have relapse after relapse, panicked about each symptom I had etc etc. Its new, its confusing and its worrying. I read your other post too, so I am responding to both here

I too have spinal lesions and a brain stem lesion but mine was 21mm. I have a rapid heart rate, reflux and swallowing issues but I also have a gastric band (although its empty so effectively not there) so for me I am not sure if its the MS or the band My hubby is convinced its the MS as it isnt always a problem so his thinking is I remitt, I am inclined to agree but I am seriously thinking of having another barrium swallow test to insure the band is correctly positioned.

I did Avonex for 12months and still progressed with lesion count so I switched to Copaxone which works really well for me (so did avonex as I had NO side effects). I had another MRI last week and doc ordered a brain and C spine but I also have lesions in my T spine too and I havent had a T spine for 2-3 years but I am not worried about that. I am in a lucky position in that I work at my hospital so I was crafty and looked up my recent and last one side by side and I think it is the same so no progression. But of course I will wait for the report.

It is early in your Avonex journey you need to give it 6 months to build up. Try not to get yourself worked up. It will get easier to deal with over time. Doctors are not miracle workers and can only help with symptoms. We have an incurable disease. I believe the rule of thumb is if a symptom is still there after 12months it is likely to be permanent. I think I am better than I was 4.5 years ago when I was diagnosed, of course it could also be that I have just got used to it.

I second all the other comments regarding steroids and I tend not to bother unless I am feeling really cruddy or as happened to me 1 year after DX I lost the sight in my right eye with ON.

Take each day as it comes and I truly hope you feel better soon.

Jo

Well, Shutterbug, I had a very long post to share with you, but my computer seemed "stuck" and I guess it got lost in the process of getting "unstuck."

To sum up: I also had 2 flares, a few weeks shy of being "back to back." I also hate Solumedrol AND prednisone, but was so desperate on Jan. 9/10 (ER night turned into 2:35 am. hospital admission) that I willingly, almost eagerly, agreed to it. I had 3 days of high dose IV steriods, followed by the current taper down of prednisone.

I also found out during my hospital stay that I'd developed hypothyroidism, so now I'm stuck adjusting to synthroid. Suffice to say, I'm a hormonal/emotional basket-case until the taper is done and my body gets used to the synthroid. It's not a pretty sight, and the recovery time from 2 flares (beg. in September and again in December) is long and hard.

I consider Solumedrol and prednisone to each be a "necessary evil" of medical treatment. It did work well for me when initially dx'ed, but not in September. My body was in such a weakened state by January, that I would have agreed to just about anything.

Hang in there. I know the frustration you feel over the ordeal to even get an appointment and then to be taken seriously. I know the confusion over whether you are in a flare or a pseudo-flare. Let's face it; MS is just not a pretty thing to live with. But...you CAN live with it.

[saywhat]

Thank you, both of you!! Okay, now I don't feel so worried about my baby 9mm lesion, knowing there is somebody out there with a 21mm one!!!! Holy crap!

I request my MRI films at the time I get them, so I'll be able to compare progression before I hear anything from anybody. Which will hopefully ease my mind, or at least offer some answers.

My WBC count was pretty low last month, so my PCP was pretty certain that the Avonex had calmed down my immune system, or maybe I was just getting over an infection or something. I'm sick of trying to put together the puzzle that isn't possible to complete.