Prednisone

[peglem]

My daughter was put on prednisone, 40mg/day for 5 days. It has made a significant difference in her ocd and general mood. Saturday is the last day. How long can I expect the effects to last?

[Kayanne]

Will there be a tapering down of the dose? That is very important...but I'm not sure of the guidelines regarding the taper down...for only five days you may not need to do that.

 

Were you using the steroid to diagnose PANDAS--the way Dr. K uses it...or were you trying to bring down your daughter's brain imflammaion?

 

It seems to me that most of the people who have used the 5 day burst as a diagnostic have seen a return back to PANDAS symptoms. However I think the time it takes varies a lot.

 

Dr. Latimer prescribed prednisone for one month for us...and then extended it two weeks after that. Our last dose was on July 18, and our DD has completely returned to her pre-PANDAS baseline and we have not seen a slip at all...in fact when the pred was done, she still had a couple of very minor issues that seem to have improved even after the last dose. She has assured me that our daughter will be okay unless she gets strep again...and she may have some minor flare ups with viral issues.

 

When prednisone is prescribed for other inflammatory issues (asthma, arthritis, rashes) it generally is taken until the symptoms dissapear.

 

Go back and look at many of my posts....there are a lot more details there.

 

Good luck

Karen

[Megs_Mom]

On about the 7th day (2 days after the Pred ended), we saw a burst of OCD activity that lasted about a week, and then the OCD continued at pre-prednisone levels. Our dd was doing extensive ERP, so it was "under control" but was constant. Are you also on anti-biotics? We were not, as we did not completely understand the issue at the time. I would suggest that if you are on Azith, that might make a difference when you come off the Prednisone. Good luck - I will be interested to hear your experience.

 

My daughter was put on prednisone, 40mg/day for 5 days. It has made a significant difference in her ocd and general mood. Saturday is the last day. How long can I expect the effects to last?

[peglem]

She was on prophylactic zith when she suffered an exacerbation of OCD symptoms and tested + for strep on 9/1. Then she was prescribed a full treatment dose of zith for 5 days...no improvement in OCD (but we didn't do another strep test after.) So we went back to the doctor and when I said that it was the antibodies to the strep causing the problem-so just getting rid of the strep wouldn't calm the symptoms, the doc suggested pred. And she's on 1500mg/day of keflex...poor little tummy. She'll remain on keflex until Oct.1st. We'll return to the doc then and switch back to a prophylaxis of something...probably zith, with a different dosing schedule. So, its kind of diagnostic, in that we'll know more if it works...

Also plan to check IgG subclasses...Her total IgG has been a little low on previous tests but subclassses have never been tested. Are there IgA subclasses? Her IgA has also been a little low on previous testing. We (her dr. and I) will try to identify an immune deficiency that may qualify her for IVIG or PEX...I absolutely cannot afford to do it without insurance coverage.

 

Also, will prednisone usage skew the IgG testing? How long after pred do you need to wait before you can get a valid IgG count?

[thereishope]

When my son got 5 days of steroids it was pretty soon after his + strep test. I think he was 5 days into antibiotics. At first, it helped him plateau. He did not continue to spiral down. That was good. Prior, he got worse by the minute.Then I began to notice improvement. He did not get worse after it. However, let me add it still took a very long time to fully recover.

[FallingApart]

We also did the 5 day course and had dramatic positive results. But, sadly, they only lasted for a week and then all of her symptoms returned and got worse by the hour. Please keep us posted.

[Worried_Dad]

Ditto. Did 5-day burst per Dr. K's direction in August 2008, while in the "teeth of the gale." Saw miraculous improvement for 4-5 days, then everything spiraled downhill again. Dr. K did say he's seen a few kids whose improvement lasted for several months, though; I pray your daughter is one of them!

[peglem]

Thank you all for sharing your experiences and knowledge.

 

IVIG terrifies me. My daughter will be 15 in a few weeks...we have been dealing with PANDAS most of her life-only the last 3 years or so have we known what we're dealing with though. Hearing forum members experiences, I don't see how I could get my daughter to cooperate with that procedure at all + the age factor it seems, reduces the chances of it being successful. Heck, I don't even know what "baseline" looks like anymore-just know its better than what I usually see.

 

Those facts lead me to the question of using the prednisone as needed to quash flair ups. Would that be so terrible? Would it continue to work? I'm talking about staying on prophylactic abx, but using pred. whenever we see symptom flair ups. What do you think?

[Megs_Mom]

I apologize if I should know this - but have you had your daughter tested immunilogically? That might be wise, as you could then see what her deficiencies, if any, are - and therefore have a better handle on what the best course of treatment might be. You may want to do the consult with Latimer, as she can give you a doctor's perspective on what course you should take. Is she 80% better than she was on Prednisone? If so, I think asking for a longer course to take down the inflamation is wise. I would also to do full strength anti-biotic for a month, to get rid of underlying issues. If you are not seeing a really good improvement, then given the serious nature of steroids, you might want think more. But if she is 50% or better, my mom instinct would kick in and ask for a longer period of build up and down (I believe that you have to go slowly off, if you are are Prednisone for more than 7 days). A coure of Prednisone is recommended for many auto-immune diseases. There are side effects, so you want to be sure she needs it. But at this point, those side effects seem worthwhile for us.

 

What are her primary symptoms? If OCD, then there is a new trial on a drug called Riluzole. It is NOT an SSRI – it is a glutamate inhibitor, I think. The trials are not published yet, but this was recommended to us by a PANDAS Neurologist, if she has another severe sudden onset, to help us get through the first few weeks. Anyway, they are accepting kids into the clinical trial. Here is the website: http://www.clinicaltrials.gov/ct2/show/NCT...zole&rank=2 (I think you’ll have to copy & paste this into your browser to read about it). I think the guy coordinating the study is Paul Grant, and he is working through the National Institute of Mental Health. Personally, I wouldn't try this until we went through a month of Prednisone NOT working, but it's an option, especially given the mixed results of IVIG with older kids. Apparently, you can also call up and ask questions about the study, or ask to talk with Dr. Grant. Anyway, here is a contact number: Contact: Lorraine Lougee, L.C.S.W. (301) 496-5323 ocdnimh@intra.nimh.nih.gov

 

At this point, we are considering the same plan as you are - unless the Pred does not work or the immuno study tells us she needs IVIG for more reasons. At that point, we would have no issue with doing the IVIG, other than dd's fear of needles, which we are working on now!

 

Thank you all for sharing your experiences and knowledge.

 

IVIG terrifies me. My daughter will be 15 in a few weeks...we have been dealing with PANDAS most of her life-only the last 3 years or so have we known what we're dealing with though. Hearing forum members experiences, I don't see how I could get my daughter to cooperate with that procedure at all + the age factor it seems, reduces the chances of it being successful. Heck, I don't even know what "baseline" looks like anymore-just know its better than what I usually see.

 

Those facts lead me to the question of using the prednisone as needed to quash flair ups. Would that be so terrible? Would it continue to work? I'm talking about staying on prophylactic abx, but using pred. whenever we see symptom flair ups. What do you think?

[acdrobert]

We had a great response to the Prednisone. The first time we took it (5 day course) we didn't tic for 5 weeks. Then slowly it came back. We have sense then gotten prednisone twice for tic relief, once after a bout with Impetigo. It stops our tics but the effects don't last as long. The last time he started ticcing again 3 days after the last dose. I have wondered what it would happen with a month of prednisone that I have heard other people try.

 

 

 

 

 

 

My daughter was put on prednisone, 40mg/day for 5 days. It has made a significant difference in her ocd and general mood. Saturday is the last day. How long can I expect the effects to last?

[Kayanne]

I really feel that prednisone is under utilized for PANDAS...it is used very frequently for all kinds of things short term...without serious side effects.

 

My daughter took it for six weeks, as per Dr. Latimer. She is now 100%. Dr. Latimer feels that if she has PANDAS symptoms again, we should be able to control it with more steroids.

 

Of course this was her first recognizable episode, and she is only 6 yrs old--so our cases are different.

 

On Aug. 11, we wasted our time and went to a rhumatologist....two good things came out of that meeting: 1) he felt that occasional use of prednisone was safe if it was effective in her case, and 2) I was able to pick his brain about prophylactic antibiotics.

 

One thing he did say was that teenagers do seem to show side effects of the pred sooner than younger children. They need to be watched more carefully.

 

The long term uses of prednisone for PANDAS is not really called for because once the infection is cleared, the autobodies are thought to subside...paving the way for healing.

 

What the prednisone will do, is suppress the immune response (no antibodies attacking the brain) and help with brain inflammation--thus letting your daughter heal quicker and maybe address inflammation that might not have healed.

 

We saw baby steps of improvement so that by about 3 1/2 weeks in, I was sure we were going to need PEX or IVIG. But with only three doses left.....it was an over night miracle she went from about 70% improved to 96% improved...she began to talk to us again!

 

So at that point we asked to extend it for another week---why stop when she was so close? Dr. Latimer told us to keep it up for two more weeks.

 

It seems you are well on your way to clearing the strep...I would talk to your doctor about extending the pred...she what he/she has to say about it....I'll bet they've written longer prescriptions for prednisone for asthma or excema.

 

Did you get my pm? Don't hesitate to call me!

 

Good Luck,

Karen

[thereishope]

I have a feeling, and it's just my opinion, is that if you get the steroid soon after you are infected with strep, you will have better, more consistent results. When my son had his second strep infection, he was very bad off. He got the steroid 5 days into antibiotics. We also caught the strep pretty fast.Overall recovery took about 2 1/2 months.When he got strep the third time, his behaviors weren't as bad as the second. The doctor would not give him a steroid. Overall, recovery that time took about 5 months. One again, we had detected the strep pretty fast.

 

fyi....We never did IVIg. He is 5 years old.

 

 

Thank you all for sharing your experiences and knowledge.

 

IVIG terrifies me. My daughter will be 15 in a few weeks...we have been dealing with PANDAS most of her life-only the last 3 years or so have we known what we're dealing with though. Hearing forum members experiences, I don't see how I could get my daughter to cooperate with that procedure at all + the age factor it seems, reduces the chances of it being successful. Heck, I don't even know what "baseline" looks like anymore-just know its better than what I usually see.

 

Those facts lead me to the question of using the prednisone as needed to quash flair ups. Would that be so terrible? Would it continue to work? I'm talking about staying on prophylactic abx, but using pred. whenever we see symptom flair ups. What do you think?

[T_Mom]

Just a note--Our use of a steroid burst (2 different times, 8 months apart) had dramatic results in academics, personality, clearing mental fog, and obvious OCD reduction (school noticed it as well--teacher called me to say she was seeing a "different child" from the one she had seen all year...) Pretty sad really.

 

This last time was about the 5th moderate-severe exacerbation (and our d has severe episodes, ie., severe OCD, stops talking, eyes closed, etc.) Prednisone for us was clearly a huge help.

Vickie--you may be right it is best to treat sooner rather than later, just wanted to add that even "later" steroids brought our d back to essentially 100%. -- She has had mild ups and downs, but much, much better. (She is continues on full strength Amox.)

[nevergiveup]

Hi peglem, I know Dr Latimer does not believe there is an age limit for treatment, she has seen kids as old as 18. Some insurances actually cover a PANDAS diagnosis for PEX but not IVIG. Plus the kids are put under for the central line. I know this sometimes seems like an endless battle just for treatment. I would taper the prednisone over a 4 to 6 week period. Side effects are tough but my daughter did that twice within the last 2 years. Her rheumotogist wanted her on them 8 weeks, felt the dosages discussed on this forum were too low and short to reduce brain inflammation. However rheumotologists use steriods all the time ( lupus and CNS damage) and know how to deal with the side effects, other doc's seem scared of long term use.

 

I know people on this forum talk about early treatment, and yeah thats best, but if your kid is older there is still hope. Look at some of Swedo original study kids, not all were young. Saving Sammy. Some doctors have treated kids in High School and College. One girl came on this forum at age 17 finally went into remission.

 

She was on prophylactic zith when she suffered an exacerbation of OCD symptoms and tested + for strep on 9/1. Then she was prescribed a full treatment dose of zith for 5 days...no improvement in OCD (but we didn't do another strep test after.) So we went back to the doctor and when I said that it was the antibodies to the strep causing the problem-so just getting rid of the strep wouldn't calm the symptoms, the doc suggested pred. And she's on 1500mg/day of keflex...poor little tummy. She'll remain on keflex until Oct.1st. We'll return to the doc then and switto a prophylaxis of something...probably zith, with a different dosing schedule. So, its kind of diagnostic, in that we'll know more if it works...

Also plan to check IgG subclasses...Her total IgG has been a little low on previous tests but subclassses have never been tested. Are there IgA subclasses? Her IgA has also been a little low on previous testing. We (her dr. and I) will try to identify an immune deficiency that may qualify her for IVIG or PEX...I absolutely cannot afford to do it without insurance coverage.

 

Also, will prednisone usage skew the IgG testing? How long after pred do you need to wait before you can get a valid IgG count?

[peglem]

Thank you all for your advice and shared experiences. Her 5th and final dose of pred. was Saturday morning. Sunday really really sucked. Don't know if it was pred w/drawal or what. She had 10-15 breakdowns...smashing her face with her knee, serious head banging...even the return of some OCD issues. A couple of times it looked like she was having some leg cramps- toes curled under and legs kinda rigid and bent at the knee.