question about prednisone pre-ivig

[danddd]

Hi everyone,

 

doctor has recommended a 5 day prednisone burst for dd.

we had one before last year (but longer, 1 wk plus 2 wk taper), and it was a NIGHTMARE.

so needless to say i am nervous about doing it again.

my understanding is that it is standard to do the burst before giving ivig.

for those of you who have done ivig, did you do the burst beforehand? and if so, did they produce similar reactions?

I am just thinking, what if the prednisone is just as bad this time around? and then the ivig makes her way worse too? is it possible?

I know a lot of your kids are in the midst of "turning back the pages" now. (i reallly hope they are starting to do well) Did a burst give you a preview of what would happen?

maybe I should just suck it up, give her the prednisone, and prepare for the worst?

 

if anyone can share their experience of these two things it would be soooooo helpful.

 

thanks everyone,

 

every time i think i know what to do, i second guess myself.

[KeithandElizabeth]

Have you done the IGENEX lyme test on your child yet? Those with lyme will sometimes have a negative reaction to the prednisone. Although another mom on this forum, who did 3 prednisone bursts as well as several IVIG's and then found out her child had lyme, had a very positive experience with the prednisone burst. Our son, who does have lyme and PANDAS, became asthmatic on the burst, but the burst did help with his night terrors. We did not know he had lyme at the time.

 

I would just double check since you did see a negative reaction the last time and steroids are not supposed to be used when someone has lyme. You can call the 1-800 IGENEX number and request a test and then have your local doctor draw the blood and sign off on it. I would recommend doing the complete lyme panel as well as the co-infections.

 

Elizabeth

[PhillyPA]

Hi everyone,

 

doctor has recommended a 5 day prednisone burst for dd.

we had one before last year (but longer, 1 wk plus 2 wk taper), and it was a NIGHTMARE.

so needless to say i am nervous about doing it again.

my understanding is that it is standard to do the burst before giving ivig.

for those of you who have done ivig, did you do the burst beforehand? and if so, did they produce similar reactions?

I am just thinking, what if the prednisone is just as bad this time around? and then the ivig makes her way worse too? is it possible?

I know a lot of your kids are in the midst of "turning back the pages" now. (i reallly hope they are starting to do well) Did a burst give you a preview of what would happen?

maybe I should just suck it up, give her the prednisone, and prepare for the worst?

 

if anyone can share their experience of these two things it would be soooooo helpful.

 

thanks everyone,

 

every time i think i know what to do, i second guess myself.

 

My son was put on steroids for a month. The first week was rough. The next three weeks were great. I was SAD when I had to take him off the steroids and asked his doctor for two more weeks on them. (His doctor said no). He is now post ivig by 6 weeks. He still has not reached all the gains he had when he was on steroids. Week 1 and 2 post ivig were calm. Weeks 3 and 4 were a nightmare. Things seemed to settle a bit by week five (although he didn't sleep much). We are just starting week 6 today.

[danddd]

thanks, I guess it can be very up and down the steroids

 

Elisabeth,

 

so sorry your son has lyme too. i do worry about it, because i myself have lyme (went undiagnosed for a loooooong time).

do you see the classic "getting worse before better" when your son starts abx?

i assumed because my daughter doesnt get worse when beginning abx, it would be safe to say she does not have lyme.

from my own experience, every time i start abx, it is like being hit by a truck.

maybe i should not assume, what do you think?

i did look into the igenex website, just in case.

 

 

dan

[KeithandElizabeth]

Hi Dan:

 

No, the antibiotic alone was initially very helpful for both of my children. My daughter started having TICs in January and had a positive lyme and strep test. Her TICs started to go away only after we started her on 2 different antibiotics at the same time, versus one antibiotic alone. My kids have had some herxing and increases in symptoms periodically.

 

Recently five other PANDAS families have been diagnosed with lyme and they did not have "typical" lyme symptoms. At least 3 of these families had negative Western Blots with their doctors and then had positive IGENEX tests because the IGENEX test tests for many more bands than the Western Blot test does.

 

I really feel that this is important for many of these families who are not having complete success with antibiotics and/or IVIG. And I really feel that all families who are beginning this journey should add the IGENEX test to their series of tests, including mycoplasma, ASO, ANTI-DNASE. I don't think lyme is the case for all families, but I think that everyone should test for it.

 

Elizabeth

[tapiash]

Hi everyone,

 

doctor has recommended a 5 day prednisone burst for dd.

we had one before last year (but longer, 1 wk plus 2 wk taper), and it was a NIGHTMARE.

so needless to say i am nervous about doing it again.

my understanding is that it is standard to do the burst before giving ivig.

for those of you who have done ivig, did you do the burst beforehand? and if so, did they produce similar reactions?

I am just thinking, what if the prednisone is just as bad this time around? and then the ivig makes her way worse too? is it possible?

I know a lot of your kids are in the midst of "turning back the pages" now. (i reallly hope they are starting to do well) Did a burst give you a preview of what would happen?

maybe I should just suck it up, give her the prednisone, and prepare for the worst?

 

if anyone can share their experience of these two things it would be soooooo helpful.

 

thanks everyone,

 

every time i think i know what to do, i second guess myself.

 

 

I was very afraid of the steroid burst too but boy did it work miracles in our home. Im not sure if I would try it again if I had the same experience you had. Today is our last day to take it. My son is scheduled for IVIG next week. Do you know if we can give the steroids again prior to the treatment. Like the day before and the day of. We have another prescription but I wasn't sure if we could just give my son the steroids before IVIG since we are done with the 30 day tapering. I have not heard back from the doctor.

[sf_mom]

Did you happen to check for Lyme prior to IVIG via Igenex? I'm a little worried to your childs response in the 3rd to 4th week post IVIG. This comment is taken from a Lyme document about Herxing cycles.

 

4-week cycles- Bb activity, and thus symptoms, wax and wane in a cycle that repeats roughly every

four weeks. This cycle, if clear, can guide your treatments.

 

http://www.lymediseaseresource.com/BurrGuide2008.pdf

 

-Wendy

 

 

 

Hi everyone,

 

doctor has recommended a 5 day prednisone burst for dd.

we had one before last year (but longer, 1 wk plus 2 wk taper), and it was a NIGHTMARE.

so needless to say i am nervous about doing it again.

my understanding is that it is standard to do the burst before giving ivig.

for those of you who have done ivig, did you do the burst beforehand? and if so, did they produce similar reactions?

I am just thinking, what if the prednisone is just as bad this time around? and then the ivig makes her way worse too? is it possible?

I know a lot of your kids are in the midst of "turning back the pages" now. (i reallly hope they are starting to do well) Did a burst give you a preview of what would happen?

maybe I should just suck it up, give her the prednisone, and prepare for the worst?

 

if anyone can share their experience of these two things it would be soooooo helpful.

 

thanks everyone,

 

every time i think i know what to do, i second guess myself.

 

My son was put on steroids for a month. The first week was rough. The next three weeks were great. I was SAD when I had to take him off the steroids and asked his doctor for two more weeks on them. (His doctor said no). He is now post ivig by 6 weeks. He still has not reached all the gains he had when he was on steroids. Week 1 and 2 post ivig were calm. Weeks 3 and 4 were a nightmare. Things seemed to settle a bit by week five (although he didn't sleep much). We are just starting week 6 today.

[Fixit]

thanks, I guess it can be very up and down the steroids

 

Elisabeth,

 

so sorry your son has lyme too. i do worry about it, because i myself have lyme (went undiagnosed for a loooooong time).

do you see the classic "getting worse before better" when your son starts abx?

i assumed because my daughter doesnt get worse when beginning abx, it would be safe to say she does not have lyme.

from my own experience, every time i start abx, it is like being hit by a truck.

maybe i should not assume, what do you think?

i did look into the igenex website, just in case.

 

 

dan

 

i do not understand lymes fully...but if you get this reaction every time you are go on abx....it sounds like herxing...and therefroe..something isn't cleared out yet...

did you do many months of abx..and or iv abx.....again i do not know the full protocal for lymes

 

if i can throw out a question for ds....his band 41 came up pos...and aother band was ind one set but normal on the other set...our doc says he is not concerned about this....

any thoughts.