Can the child be on prednisone at time of IVIg?

[Phasmid]

We're on a tapering 30 day prednisone. It is day 10 I think. I am starting to feel (after seeing elevated antineurononal antibody numbers) that we are just wasting time and need to get him in for IVIg, but can you be on prednisone and get infusion?

[Megs_Mom]

We're on a tapering 30 day prednisone. It is day 10 I think. I am starting to feel (after seeing elevated antineurononal antibody numbers) that we are just wasting time and need to get him in for IVIg, but can you be on prednisone and get infusion?

 

I can't answer this, although I think the answer is yes - I think some here have posted about using it during and after. But in case you are not aware (I'm sure you are!) you can't "quit" a 30 day prednisone program, you have to taper off, as the body stops making the right levels after about day 5. After that, you have to allow the body to build back up while you taper off the medication.

[Kayanne]

I just want to add that one or two doses before/after IVIG to help with headaches are probably benign...but to have IVIG right after or during a month long course of prednisone that is immuno-suppressive may be working against the IVIG...isn't IVIG supposed to be "rebooting" the immune system? So I think you would want to wait for the prednisone to no longer be working in the body so it doesn't hinder whatever is happening to the immune system because of the IVIG treatment.

 

I'm not a doctor, and I have never asked a doctor about this...so I could be completely wrong!

Edited July 11, 2010 by Kayanne

[sptcmom]

I just want to add that one or two doses before/after IVIG to help with headaches are probably benign...but to have IVIG right after or during a month long course of prednisone that is immuno-suppressive may be working against the IVIG...isn't IVIG supposed to be "rebooting" the immune system? So I think you would want to wait for the prednisone to no longer be working in the body so it doesn't hinder whatever is happening to the immune system because of the IVIG treatment.

 

I'm not a doctor, and I have never asked a doctor about this...so I could be completely wrong!

 

Dr K tells us regular abx, non dairy light breakfast before IVIG thats all. Then he gives tylenol and benadryl. Prednisone 10 mg two tablets is what he gave us for post IVIG vomitting etc. We had to use one 10 mg dose and tide DS over the side effects.

The other child who was having IVIG with Dr K at the same time as us, had severe side effects during IVIG 2nd day and his dad said they gave him IV steroids to get him back on track and more hydration, then continued with the IVIG once he was stable again. So Dr K isn't against using steroids as and when needed, even right in the middle of IVIG.

Steroids can be immune modulating too when taken for a long time with a taper from what I know. The effect doesn't last as long as with a successful IVIG but I don't really know the interaction of the two treatments.

[momaine]

Dr. B allowed my 100lb 13 yo dd to be on prednisone the 20 days leading up to ivig at 10mg every other day after I asked specifically if she could continue on it as her life goes from ###### without prednisone to bearable while on prednisone and I just couldn't bear to watch her slide backwards again. This kid has been through ###### and back. He also gave her 40mg prophylactically on the days she had ivig with a short taper afterwards. (30mg the following day and 20mg the day after that) He never mentioned that the IVIG would be any less successful having done that. During the month leading up to IVIG while on prednisone, her facial motor tic lessened drastically.

Angela

[Fixit]

We're on a tapering 30 day prednisone. It is day 10 I think. I am starting to feel (after seeing elevated antineurononal antibody numbers) that we are just wasting time and need to get him in for IVIg, but can you be on prednisone and get infusion?

 

I can't answer this, although I think the answer is yes - I think some here have posted about using it during and after. But in case you are not aware (I'm sure you are!) you can't "quit" a 30 day prednisone program, you have to taper off, as the body stops making the right levels after about day 5. After that, you have to allow the body to build back up while you taper off the medication.

 

the right levels of what.....?

does the taper have a better chanc of making the results stick?......or, you may not get a rebound effect, as the tapering helps modulate down....?

 

when we did burst...we didn't have our gloriuos 4 days till 21 days post burst....

if you do a taper, (we started to see results day 9 this time....we are currently on day 12) can things continue to get better.?

i keep hearing of people tapering down and problems increasing...

anyone have continuing progress..again ours didn't kick in this time till a couple days after we dropped dosage

PS the first week vocals ramped up but now we are better than when we started!!!!!(yeast?)

[Kayanne]

We're on a tapering 30 day prednisone. It is day 10 I think. I am starting to feel (after seeing elevated antineurononal antibody numbers) that we are just wasting time and need to get him in for IVIg, but can you be on prednisone and get infusion?

 

I can't answer this, although I think the answer is yes - I think some here have posted about using it during and after. But in case you are not aware (I'm sure you are!) you can't "quit" a 30 day prednisone program, you have to taper off, as the body stops making the right levels after about day 5. After that, you have to allow the body to build back up while you taper off the medication.

 

the right levels of what.....?

does the taper have a better chanc of making the results stick?......or, you may not get a rebound effect, as the tapering helps modulate down....?

 

when we did burst...we didn't have our gloriuos 4 days till 21 days post burst....

if you do a taper, (we started to see results day 9 this time....we are currently on day 12) can things continue to get better.?

i keep hearing of people tapering down and problems increasing...

anyone have continuing progress..again ours didn't kick in this time till a couple days after we dropped dosage

PS the first week vocals ramped up but now we are better than when we started!!!!!(yeast?)

 

The adrenal gland secretes different steroid hormones...and if you are giving prednisone (a corticosteriods) for more than 5 days, the adrenal gland begins to rely on it...I've read that it shuts down, and you need to taper down the dose so that the adrenal gland begins to increase production again...you can't just stop taking it, you may have severe withdrawl symptoms from lack of the proper hormone production.

 

Okay, I personally feel that if the underlying infection is truly addressed, then a month long course of prednisone has a good chance of being a lasting treatment (until the next infection). I think for some people, only doing 5 days could possibly be stopping a treatment before it has a real chance to make a difference...but that is up to a doctor and parent to decide. Prednisone is not without risks and it always comes down to risks vs. benefits to a family.

 

I want to say that the first week on pred is sometimes more difficult...this time around, my daughter was in her room banging on the walls and screaming..."I don't feel like myself!" But by the month's end...no PANDAS at all. We have had lasting results since mid-April.

[Phasmid]

Wow. Just from the prednisone? I guess I have to trust and give more time. He was doing great the first week. It has been 10 days only today. All of a sudden, he is more sullen, tired, but doing ok. The first few days on prednisone were almost like he was on an upper! Then, he got very tired, spent a lot of time in bed. But that may be due to our situation at present, being away from home and kind of bored. He has had energy to go out and surf, play in the ocean, so he's fine I'm sure. His face is getting a bit puffy, but now we're on the taper down, so I'm sure it will subside. The real test will be all about the picking eyelashes and going to sleep. Not good last night... we're in a tiny house (really tiny!) and he called me into the room after he had been laying there trying to fall asleep for 10 minutes. Darn. I haven't seen him picking his eyes this week, but I haven't been watching as closely either.

[Kayanne]

Wow. Just from the prednisone? I guess I have to trust and give more time. He was doing great the first week. It has been 10 days only today. All of a sudden, he is more sullen, tired, but doing ok. The first few days on prednisone were almost like he was on an upper! Then, he got very tired, spent a lot of time in bed. But that may be due to our situation at present, being away from home and kind of bored. He has had energy to go out and surf, play in the ocean, so he's fine I'm sure. His face is getting a bit puffy, but now we're on the taper down, so I'm sure it will subside. The real test will be all about the picking eyelashes and going to sleep. Not good last night... we're in a tiny house (really tiny!) and he called me into the room after he had been laying there trying to fall asleep for 10 minutes. Darn. I haven't seen him picking his eyes this week, but I haven't been watching as closely either.

 

Yes, we also had 98% improvement the first time (Spring 2009)...and within 2 mos of finishing the pred that time she was 100% and that was sustained until my other kids had positive strep in Feb of this yr.