Do steroids stop working or take longer....

[angelpach]

I posted this on facebook as well. I thought I'd copy and paste it here as well.

My question is

1. Does Steroids ever stop working?

2. Does it sometimes take MORE steroids for a "flare" to stop?

I'm on my 4th day of steroids & even though I can swallow without feeling like my throat won't open back up, I have most of my smile back on the rt side, I can walk better but still in pain, having that on fire feeling (left side of face, head, hands and feet), cell phone vibrating feeling here and there on my elbow, headaches..... I could go on but won't.

I just wonder if this is as good as it's gonna get this time. I've been on Steroids many times and always seemed to bounce back to a better place although never truly got rid of everything just got to a point I could handle it better.

Thanks ahead of time.

GOD Bless & I pray everyone is doing well & stays cool.

[0485c10]

What kind of steroids? you have only been diagnosed for a year but you have been on steroids many times?

my understanding is that steroids will become ineffective over time, especially if used too much.

the episode that diagnosed me i did 5 days of iv steroids and about 9 days of oral prednisone as a tapper. it improved over the 5 days of iv and stayed improved through the taper but a few days after i stopped the taper it got worse again. the doc prescribed another 9 days of the taper and this time it stayed better.

another time it did not improve during the iv steroids or during the taper it gradually improved a few weeks after that. that was my most recent steroid use, i wonder if that means it is becoming ineffective in me? i do know during that episode i was panicked but a woman calmed me by telling me that she never feels an improvement from steroids until a few weeks after she has done them.

it just wasn't the response i was expecting. it was normal for her.

steroids are not the same for everybody and not the same within the same person every time.

you may have to wait a few weeks before the doc will be willing to prescribe more

btw..steroids reduce inflammation. it is the inflammation impinging on the nerve that causes the symptoms of a relapse. steroids cause the inflammation to reduce faster so the symptoms of the relapse end sooner but the inflammation will reduce on its own without steroids, it just takes longer. be patient, you have a while to go b/4 you can realistically decide if this is as good as its gonna get.

you have a follow up appointment with the doc? there is another med you can use if steroids become ineffective in you. ACTH was used b/4 steroids were known to help & are still used some when Steroids are a problem for them.

nmss site for treating ms attacks(exasberations):

http://www.nationalmssociety.org/abo...ids/index.aspx

[Kimba22]

angelpach,

1.) Yes, if you are no longer having inflammation ... this can happen after you progress into SPMS.

2.) Sometimes it takes longer than other times to recover from a relapse. It can happen quickly, or take weeks to months to recover. Steroids shorten the duration of a flare by reducing inflammation faster. Just because you didn't bounce right back, doesn't mean you won't.

Remember, steroid use carries serious long term effects (i.e. osteoporosis, diabetes). Don't expect your neuro to keep prescribing more oral (or IV) steroids unless he/ she really thinks it's necessary.

Hope you start noticing some improvement, soon. Hang in there!

[littlered82]

ACTH was used b/4 steroids were known to help & are still used some when Steroids are a problem for them.

The last two times I have been on Acthar Gel Shots (I am assuming that is what you meant when you said ACTH?)

The first time I was on them was back in March. I was put on this instead of Solumedrol b/c I can not drive and due to my husband's work schedule, I was not able to get to the hospital every day.

When I took Acthar the first time, I had a BAD relapse. The worse one I had ever had. It was so bad that I could barely walk and seriously needed to be in a wheel chair. My hands were also bad b/c I had to use one hand to move my fingers on the other hand.

After being on Acthar for 14 days, I could walk again. I had to go on Predisone after that only b/c I had a little injury 2 days after I stopped the Acthar. The injury reversed the help the Acthar gave me and started putting me back into the relapse.

The predisone boosted the Acthar, but only helped for a couple of months. I had to go back on Acthar again at the end of June. It started working right in the middle of the 14 day treatment and worked until 2 weeks after it was done. Unfortunately, the relapse is starting back up again.

However, 3 years ago when I first got Dx, I went completely blind in my right eye. I went on Solumedrol for 5 days and was able to see a week later. It took a long time for my vision to go completely back to normal (5-7 months maybe?), but the last time they checked, I had 20/20 vision in that eye.

Everyone's MS is different. Also, everyone's response to the steroids is different. What may have taken someone else a few days, may take you longer, or vice versa.

Unfortunately, it is a waiting game.

[littlered82]

The predisone boosted the Acthar, but only helped for a couple of months. I had to go back on Acthar again at the end of June. It started working right in the middle of the 14 day treatment and worked until 2 weeks after it was done. Unfortunately, the relapse is starting back up again.

Sorry, I had to write an additional post (It won't let me edit the original one).

After reading what I wrote, I actually forgot that this last time Acthar didn't help, I actually got worse during the treatment and needed to have another dose of prednisone for a couple of weeks (which didn't work). How could I forget this you might wonder?

Well, first of all, I am writing this on 2 hours of sleep. Secondly, in the last few months I have been on so many dang steroid treatments (and dr visits/ blood tests/procedures/treatments/pills for all of the OTHER medical conditions I have. Yes, there are 6 other medical conditions that I have). that all of my days and months seem to just merge all into one.

Anyway, I just felt the need to correct what I said b/c the Acthar/Predisone didn't help last time.

[angelpach]

Thank you all very much.

I am doing the prednisone as a taper off thing right now.

I have been on IV SOL now 3 times ( 2 times were for 5 days and the other was 3) I've also been on Prednisone.

My Neuro doesn't like to put me on it either.

I already have Osteopenia as of 4 years ago; mt body wasn't taking in Vit D3 and Cal. as well as my B12 being very low. I'm taking extra Vits for all that still.


I was told this last visit when I was in the middle of what I believe to be the worst flare (because of swallowing problems) that my MS was getting worse.(after scan)

I am supposed to be thinking of doing Tysabri and that my doctor would sign me up through MS Touch prescribing program but I'm still in the middle of making that decision because of the awful things that "could happen". it seems if it can happen it will happen to me.

I do feel like I'm getting some what better.
I was told by the nurse "sometimes when you "recover" it doesn't always go back to the way it was".

Thanks again for all the information. hugs and prayers for a good day for all.

Although I was DX a year ago it has been going on for awhile.

[0485c10]

Plasmaphoresis(blood filtering) has also been used to treat difficult relapses, so you are not anywhere near the end of options & sp does not come on suddenly...a person is not suddenly sp there is a gradual transition between the 2 when there is less & less recovery, so its unlikely your just instaneously sp, more likely you are not responding as well to a med..btw i do not regret that i switched to tysabri. when i switched i knew it had been a 21 years since my onset symptom & i knew that 90% of people are SP within 25 years of onset. so when i made my decision i knew i had a closing window of opportunity that i could use Tysabri if i wanted to use it. tysabri was only effective in relapsing forms of ms.

and i knew i would never forgive myself in the future if i had not tried. so i was very ambivalent about tysabri for the first year.

i hoped i would have an infusion reaction that would force me to stop it...take the decision out of my hands....your kind of in the same boat, worrying about a side affect, infusion reaction without ever knowing that it will happen. i think you have to plug your nose and test the waters.

infusion reaction are most common after the second infusion, so you may only need to hold your nose for 2 months then you will know whether it would have worked or not. it would be ironic if you end up beating yourself on the head in the future because you didn't try it in time, but you wouldn't have been allowed to use it anyway if you had tried it. there is a lot of future angst you can avoid by trying it now..see if you can use it...give it a year then make another decision whether to continue or not.

btw my doc told me to start betaseron at first but said any other med was ok with him except copaxone. he said we know what is causing the problem we will harness what is causing the problem, the immune system, not give the immune system more target practice at doing the wrong thing.

copaxone works by loading these fake myelin cells for the immune system to attack instead of the real myelin. it sounds like you immune system has seen through the deception and if not with tysabri, you probably want to harness your immune system with an interferon, gilenya or tysabri just don't stay on copaxone if it causing an acceleration in your relapses.