Tics and (cortico)steroids?

[guy123]

Can someone help me understand why?

 

I've heard that one of the tests for PANDAS is to to be given a "steroid burst" and if symptoms reduce, that's a good indication it's PANDAS.

 

But people say that steroids (whether anabolic or corticosteroids given for inflammation) make non-PANDAS tics worse.

 

Why does the same treatment have opposite effects?

[Chemar]

most steroids are dopaminergic

 

dopamine increases tics in people with TS

[cidermill]

Chemar - any idea how I can find out if my son's Flovent corticosteriod is dopaminergic? He's 5 and has had some slight tics (nothing too noticable) for a while. Every fall through summer we've been giving him Flovent 2x/day (the lowest dose possible). I'm meeting with his Dr to see if we can take a "wait and see" approach this fall since I hate giving him any unnecessary meds anyway. Now with your posting about the effect on tics, it makes me want to stay away from it all the more....

[Chemar]

corticosteroids are dopaminergic. and doapaminergic things trigger tics for people with Tourette Syndrome

 

I dont know what the pathways of absorption are for the flovent so cannot say if it has any other points of receptor interaction ie in the brain

 

oral steroids and steroid shots are ones that would be most problematic for a person with tourette syndrome

 

please do note I am stressing TS as that is where dopamine seems to spike tics. A PANDAS or other autoimmune illness where TS is not also a factor is not what I am referring to. PANDAS kids are believed to have inflammation of the basal ganglia, triggering tics. When the inflammation goes down on steroid treatment, the tics decrease.

Inflammation may or may not also be a factor in TS, but it seems the dopamine trigger over rides the reduction of inflammation when they are steroid treated.

We saw this when my husband had a steroid burst for sciatic inflammation and spinal herniation. The pain reduced, but his tics skyrocketed!

 

my old computer crashed a few weeks ago and I lost all my bookmarks ): so I cant access the articles I have on this now, but it is pretty well documented that dopamine triggers TS tics and that steroids, especially cortico and androgenic, are dopamine elevators=tics increase

[Fixit]

i am not sure how dopamine plays different in pan/pits vs ts

 

if someone could explain as here is my ds cunninghma results

 

and things were not as bad as they were..nor as bad it became in the future

1st draw

 

camk 105...this may have put me out of the picture...but my gut told me too many incidents of strep..to not keep going

 

anti-lysoganglioside normal

anti-tublin normal

 

anti dopamine 1 2000

normal range 500-2000

normal mean 1056

 

anti-dopameine 2 8000

normal range 2000-16000

normal mean 6000

 

so basicly only dope 1 was high side.

 

but at this point my son was still not completely healed...i had not seen a pandas doc and was scared as per these results...

 

things were getting worse..took to another neuro..gave us rx for chlonide...i couldn't fill it..i felt like would be going down the wrong path(ps ds has horrible allergies and that is what i think brought this to a head)

did 5 day burst...that's when the vocals came and they were bad...but i had also not been on any abx, which you should do for several months prio to steriod..i am almost certain he had yeast issues per many spit tests and many years of on/off again abx for 7 years w/o any probiotics...

3 weeks post burst we had 4-5 days of mild,, spread appart, soft tics(very livable)only someone in the know would notice

but everything came back

 

then when i saw a dan we redrew the test.camk was 160

this was at end or march...he has terrible allergies..and things were scarey

 

all his number on the rest of the test came back exactly the same....

except anti-dope 1.... it was now 4000 ....with the same ranges...it doubled...

 

well things were still very bad..full body tics..chaining, vocals, complex

nothing seems to hold..we would see a little betterment then loose it...

we were denied ivig...and that was my clue to go see the top panda nuero..in md..

she had some things happen and my appointment was pushed out...i was desperate...ds is getting older

my dan knows her protocal is a 28 day steroid taper...

well things got better and better ...to the point that 11-12 days post taper we had NO TICS...

school started the 2nd day of no tics..by 3rd day things started coming back...then it seemed to get a little better again

Motors are minor...i think they are ready to go away!!!

he still has vocals not as bad..but concerned as i think they are creeping up...and IMHO..i correlate vocals to gut/intestinal issues at least for ds....

i dont have an exact plan from here.....this desease is like a finger print..different for every patient...

 

but the question is how are the anti-dopamines listed different from the dopamine being discussed here...???

its a sincere question and maybe one that will help guide others...

thanks

and Healing to everyone

[guy123]

most steroids are dopaminergic

 

dopamine increases tics in people with TS

 

Right I understand that, but I'm asking why in one case (PANDAS) it reduces tics and in the other case (TS) it exacerbates them.

 

edit - I didn't see your second reply before I posted my reply. Nevermind.

 

When your husband had his steroid burst (prednisone?) did his tics ever return to baseline? If so, how long did it take?

Edited August 26, 2010 by guy123

[guy123]

but the question is how are the anti-dopamines listed different from the dopamine being discussed here...???

its a sincere question and maybe one that will help guide others...

thanks

and Healing to everyone

 

I'm not familiar with the test (although I would love to get it myself because I'm a nerdy like that), but are you talking about anti-dopamine antibodies?

[Chemar]

 

 

When your husband had his steroid burst (prednisone?) did his tics ever return to baseline? If so, how long did it take?

 

no

he was at the stage of almost no tics (a few facial grimaces and occasional throat clearing tic) He is in his sixties.

he had the steroid burst in 2008 and his tics skyrocketed

Although they are not as bad as during and after the burst, they have remained elevated since, and even the usual things that relax tics (eg magnesium) have much reduced effect on him

 

he also felt the prednisone hampered his cognitive process, another side effect that has not gone away

[guy123]

Chemar, that's scary.

 

I worry that at some point in the future doctors will want to give me Prednisone for something and I will have to refuse it.

 

Are there any alternatives?

[Chemar]

there are many other anti-inflammatory agents, including numerous natural ones

 

when my son was first diagnosed with Crohn's they wanted to treat him with steroids and he refused, knowing the potential for tic problems (sadly my husband and his doctor did not listen to my warnings!)

 

my son is on an all natural anti-inflammatory diet and has his Crohn's, tics and OCD in the most stable place they have ever been

 

when he initially refused the immuno-suppressive and anti-inflamm and antibiotic meds etc the Crohn's docs told him he would deteriorate and end up needing surgery. this was in 2006.

 

he has sure proved them wrong!

[guy123]

I'm glad your son is doing well, Chemar