Can someone tell me about how steriods works

[melanie]

Ive never tried steroids with danny he did the IVIG and had great results temporarily.Hes on Clindimyicin 600 mg a day and Dr T is willing to do steriods were still awaitng the IV but should I try the steriods? Will it work like the IV did.I know that the IV works so I dont want to do it just for that reason,If He could actually get relief for a while then yes we will try it .\\Again Thanks for any help .

 

Melanie

[peglem]

Steroid suppresses the immune response- so slows down the making of those auto-antibodies. IVIG is donor IgG, so is supposed to give you a "normal" immune response. (I think)

[Buster]

Ive never tried steroids with danny he did the IVIG and had great results temporarily.Hes on Clindimyicin 600 mg a day and Dr T is willing to do steriods were still awaitng the IV but should I try the steriods? Will it work like the IV did.I know that the IV works so I dont want to do it just for that reason,If He could actually get relief for a while then yes we will try it .\\Again Thanks for any help .

 

Melanie

 

Hi Melanie,

 

There are a couple of theories here. PANDAS is thought to be caused by three things:

1. an immune response that generates an anti-neuronal antibody
   
2. a failure of the T-reg cells to suppress the anti-neuronal antibody
   
3. a breach of the blood-brain barrier such that the anti-neuronal antibody reaches neuronal tissue
   

So prednisone slows down the production of antibodies (what peglem wrote) what affects #1 and acts a bit like #2.

 

In addition, prednisone is highly anti-inflammatory (by reducing inflammatory cytokines) and thus can close #3.

 

Given that advil also seems to work and that IVIG seems to work (but the antibodies seem to stay high based on our anecdotal experience). I think it is fundamentally #3 at play -- prednisone temporarily is closing the BBB.

 

Buster

[melanie]

Ive never tried steroids with danny he did the IVIG and had great results temporarily.Hes on Clindimyicin 600 mg a day and Dr T is willing to do steriods were still awaitng the IV but should I try the steriods? Will it work like the IV did.I know that the IV works so I dont want to do it just for that reason,If He could actually get relief for a while then yes we will try it .\\Again Thanks for any help .

 

Melanie

 

Hi Melanie,

 

There are a couple of theories here. PANDAS is thought to be caused by three things:

1. an immune response that generates an anti-neuronal antibody
   
2. a failure of the T-reg cells to suppress the anti-neuronal antibody
   
3. a breach of the blood-brain barrier such that the anti-neuronal antibody reaches neuronal tissue
   

So prednisone slows down the production of antibodies (what peglem wrote) what affects #1 and acts a bit like #2.

 

In addition, prednisone is highly anti-inflammatory (by reducing inflammatory cytokines) and thus can close #3.

 

Given that advil also seems to work and that IVIG seems to work (but the antibodies seem to stay high based on our anecdotal experience). I think it is fundamentally #3 at play -- prednisone temporarily is closing the BBB.

 

Buster

[melanie]

Ive never tried steroids with danny he did the IVIG and had great results temporarily.Hes on Clindimyicin 600 mg a day and Dr T is willing to do steriods were still awaitng the IV but should I try the steriods? Will it work like the IV did.I know that the IV works so I dont want to do it just for that reason,If He could actually get relief for a while then yes we will try it .\\Again Thanks for any help .

 

Melanie

 

Hi Melanie,

 

There are a couple of theories here. PANDAS is thought to be caused by three things:

1. an immune response that generates an anti-neuronal antibody
   
2. a failure of the T-reg cells to suppress the anti-neuronal antibody
   
3. a breach of the blood-brain barrier such that the anti-neuronal antibody reaches neuronal tissue
   

So prednisone slows down the production of antibodies (what peglem wrote) what affects #1 and acts a bit like #2.

 

In addition, prednisone is highly anti-inflammatory (by reducing inflammatory cytokines) and thus can close #3.

 

Given that advil also seems to work and that IVIG seems to work (but the antibodies seem to stay high based on our anecdotal experience). I think it is fundamentally #3 at play -- prednisone temporarily is closing the BBB.

 

Buster

 

 

Ok But if danny already has a low IgG levels and has specific immune issues is this ok PEG LIKE YOUR dd danny is on the spectrum.Did Dr L say anything about that.Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out.

Wont steroids make him angry

 

Im a Phys Ed Teacher and a personal trainer and I know in all of my years of teaching and working with athletes ,steroids seem to make people a little "nuts".Is this ddifferent?

 

Steroids weaken the immune system Isnt that bad?

BUSTER HELP!!!

 

Melanie again

[peglem]

Prednisone is a different kind of steroid than athletes use.

[peglem]

Oops, sorry, I didn't address the autism part. Dr.L did not discuss steroids with us, other than to note that Allie responded well to them. As far as the autism, she just said like any other kid, medical needs should be addressed. I know that sounds obvious, but if your experiences w/ doctors has been like mine-most don't seem to understand that!

[melanie]

Oops, sorry, I didn't address the autism part. Dr.L did not discuss steroids with us, other than to note that Allie responded well to them. As far as the autism, she just said like any other kid, medical needs should be addressed. I know that sounds obvious, but if your experiences w/ doctors has been like mine-most don't seem to understand that!

 

 

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)?

Melanie

[peglem]

Oops, sorry, I didn't address the autism part. Dr.L did not discuss steroids with us, other than to note that Allie responded well to them. As far as the autism, she just said like any other kid, medical needs should be addressed. I know that sounds obvious, but if your experiences w/ doctors has been like mine-most don't seem to understand that!

 

 

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)?

Melanie

Melanie, I can't tell you what to do- our children may have entirely different reactions. For us, the results were only while on the steroid, but we had a lot of other stuff going on.

[melanie]

Oops, sorry, I didn't address the autism part. Dr.L did not discuss steroids with us, other than to note that Allie responded well to them. As far as the autism, she just said like any other kid, medical needs should be addressed. I know that sounds obvious, but if your experiences w/ doctors has been like mine-most don't seem to understand that!

 

 

So do you think I should try them with danny? HOw long are the results?Are they lasting results (if you get them)?

Melanie

Melanie, I can't tell you what to do- our children may have entirely different reactions. For us, the results were only while on the steroid, but we had a lot of other stuff going on.

 

 

Thanks did you do the steriods with the antibiotics (at the same time)?

[coco]

Hi Melanie - yes, we did abx with steroids. There is a recent thread called "steroids" -- if you haven't already done so, take a peek at them and I think you will find some stories which will be helpful is assisting your decision-making.

[Buster]

Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out. Wont steroids make him angry.

 

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies.

 

If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle.

 

Buster

 

P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory.

[melanie]

Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out. Wont steroids make him angry.

 

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies.

 

If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle.

 

Buster

 

P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory.

 

If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing

[peglem]

Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out. Wont steroids make him angry.

 

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies.

 

If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle.

 

Buster

 

P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory.

 

If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing

 

I don't think those are that important as far as steroids go (Allie is low in both of those as well), I think the reason why our positive effects did not last longer is because Allie still had intracellular strep, and though she was on antibiotics at the time, suppression of the immune system allowed the strep to grow w/o even the little help that her immune system would have given in fighting it. During the steroid those auto-antibodies were reduced, giving some relief, but came right back afterwards. Also, the intracellular strep was stirred up w/ dental problems at the same time.

[melanie]

Will the steroids help for as long a period as the IVIG ? I cant handle this much longer,Im really tired of tring to figure all of this out. Wont steroids make him angry.

 

So far on the forum, we seem to find that prednisone (a very specific type of steroid that is highly anti-inflammatory and immunosuppressant) provides only temporary relief. While prednisone does calm the immune system, if the original triggers are around (virus, bacteria, auto-immune) then when the prednisone is stopped the B-cells will reactivate and release more antibodies.

 

If the original trigger is gone, then prednisone can be effective at breaking an inflammation cycle.

 

Buster

 

P.S. And prednisone isn't anything to mess around with. It has lots of nasty side effects if someone is on it for any prolonged period. It is not the same thing as the anabolic-androgenic steroids (fake testosterone) you were referring to. Prednisone is a very specific synthetic corticosteroids that mimic the action of cortisol (cortoisone) -- prednisone is a immunosuppressent and anti-inflammatory.

 

If Danny has low Igg and low IGa levels will steriods be a good thing or a bad thing

 

I don't think those are that important as far as steroids go (Allie is low in both of those as well), I think the reason why our positive effects did not last longer is because Allie still had intracellular strep, and though she was on antibiotics at the time, suppression of the immune system allowed the strep to grow w/o even the little help that her immune system would have given in fighting it. During the steroid those auto-antibodies were reduced, giving some relief, but came right back afterwards. Also, the intracellular strep was stirred up w/ dental problems at the same time.

 

 

Thanks Peg and Buster and of course Dr T

 

Im going to start the steroids tomorrow morning see how it goes 20 mg am 200 mg pm cross your fingers

 

Melanie