Methotrexate?

[peglem]

Allie's pediatrician called me last night. He's been pondering Allie's situation w/ this recent flare. His thinking is that we are unable to eradicate the strep-it's too prevalent in the environment and the immune system reacts even to exposure, so he's wondering if we should look at decreasing her immune response with something like methotrexate instead. With her getting IVIG every 3 weeks, he feels she'll still be protected against illness and she's on a lot of NSAIDs for inflammation. He's asked me to look into the possibility. So...anyone with methotrexate experience?

Edited December 22, 2011 by peglem

[dcmom]

Peg- no experience.

 

But, you might want to look into this.... I met with a prominent rheumy (adult) last year who was interested to see my kids. He couldn't/wouldn't treat, but sat in on an appt we were having. He said his group is having great success with low-dose cellcept for kids with lupus. He thought that would be an avenue to explore for us (we haven't). I imagine this would have the same effect your doc is looking for.

[peglem]

Peg- no experience.

 

But, you might want to look into this.... I met with a prominent rheumy (adult) last year who was interested to see my kids. He couldn't/wouldn't treat, but sat in on an appt we were having. He said his group is having great success with low-dose cellcept for kids with lupus. He thought that would be an avenue to explore for us (we haven't). I imagine this would have the same effect your doc is looking for.

Thanks. I'll look that up. Anyone have some experience to share w/ cellcept?

[PowPow]

Peglem~ I want your pediatrician!

Methotrexate has some serious potential side effects, but I think for those of us who have kids who are so severely sick and chronically so, it is a good avenue.

A rheumatologist, neuro & a peds critical care doc all have said (separately) that they think this kind of medicine is what might be the ticket for these kids (and my daughter specifically). The rheumatologist was the only one who was really ready to prescribe it- and she was going to prescribe Enbrel. However, this was right when my child took a turn for the worse (just when i thought it could not get worse) and there was no way to get the injections in her ion the frequency required for starting treatment.

 

We are pursuing other things now and hoping to get her to a better place where we can go back to the rheumatologist. She is not cooperative enough now to go to all the appts and lab draws that will entail.

 

I think this is really exciting and please let us know how this turns out!

[peglem]

Peglem~ I want your pediatrician!

Methotrexate has some serious potential side effects, but I think for those of us who have kids who are so severely sick and chronically so, it is a good avenue.

A rheumatologist, neuro & a peds critical care doc all have said (separately) that they think this kind of medicine is what might be the ticket for these kids (and my daughter specifically). The rheumatologist was the only one who was really ready to prescribe it- and she was going to prescribe Enbrel. However, this was right when my child took a turn for the worse (just when i thought it could not get worse) and there was no way to get the injections in her ion the frequency required for starting treatment.

 

We are pursuing other things now and hoping to get her to a better place where we can go back to the rheumatologist. She is not cooperative enough now to go to all the appts and lab draws that will entail.

 

I think this is really exciting and please let us know how this turns out!

Our pediatrician IS wonderful and I'm so grateful that we have him. However, because he is a pediatrician, he will not be able to rx this stuff, but will go to bat with a specialist in trying to get it rx'd. Does all this stuff have to be injected, or are there pills? I don't think our rheumy will go for it, but the immunologist or the neurologist might. What he's thinking, w/ Allie's recent migraine history, is that she has vasculitis-or at least that could be argued to try the meds out. She's on so much NSAIDs (and I've tried reducing, but cannot) that he figures the risk of low dose methotrexate is at least not greater than the NSAIDs.

It really bothers me that so many docs are willing to just let her suffer because she has so many neurological problems.

[peglem]

Bumping. Pediatrician wants me to find out what experience others have had with these kinds of drugs.

[peglem]

'nother bump

[PowPow]

Obviously, I do not speak for the entire forum, but I do not think you will find anyone who has used it for PANDAS or whatever this is...

You would find kids and adults alike with autoimmune enceph getting some of this stuff, but otherwise, I think that is it.

Though many docs think it is the way to go- these drugs are really serious and need some close monitoring. I think the doctors that are little fish swimming against the tide are not up to doing this solo. I cannot say I blame them.

To prescribe off-label abx or even neuro/psych meds ( I am thinking rilutek/ namenda.that kind of thing) is one thing, but to prescribe systemic immune modulating drugs is probably not something many of them want to do- without having a rheumatologist who knows about these drugs consulting. We need a PANDAS rheumatologist

this is what i have gathered from the conversations with a few different doctors about it.

[peglem]

Obviously, I do not speak for the entire forum, but I do not think you will find anyone who has used it for PANDAS or whatever this is...

You would find kids and adults alike with autoimmune enceph getting some of this stuff, but otherwise, I think that is it.

Though many docs think it is the way to go- these drugs are really serious and need some close monitoring. I think the doctors that are little fish swimming against the tide are not up to doing this solo. I cannot say I blame them.

To prescribe off-label abx or even neuro/psych meds ( I am thinking rilutek/ namenda.that kind of thing) is one thing, but to prescribe systemic immune modulating drugs is probably not something many of them want to do- without having a rheumatologist who knows about these drugs consulting. We need a PANDAS rheumatologist

this is what i have gathered from the conversations with a few different doctors about it.

Yes, I agree. The pediatrician has told me that he cannot rx this- it would put his license in jeopardy. He knows that I communicate w/ other PANDAS people and also knows that most treatment info is anecdotal at this point. He does have several PANDAS patients and is not afraid to give aggressive treatment, provided the treatment is relatively safe. He has and will continue to go to bat for Allie with specialists- and that's why he's requesting info if there is any, so he can determine the likelihood of success, but also to have info to share with the specialist. He has a good relationship with Allie's rheumy, but I think her position at the local children's hospital makes it difficult for her to step outside the box. We may have a chance w/ the immunologist or the neurologist. Anyway, I'm not even sure if this is something I want to try yet.

 

I promise not to bump this up forever, but would like to make sure I've really gotten input from anybody who might have some info.

[PowPow]

Keep bumping it! I want it, too:) read about nmda. There was I think doctor in southern california who is using cellcept. I read it somewhere! Dr Jory goodman. Beverly hills shrink- he might be some places to research. Sorry for typos I'm on my phone!

[rjayne]

I discussed at length using full dose Cellcept as part of my daughter's treatment for opsoclonus myoclonus. If you search Cellcept, you'll find it. At first it seemed beneficial as it suppresses both b and t cells and we were using it with rituxan which eliminates b cells only. The OMS related behaviors and rages eventually returned and we discontinued after a year. Some parents have had success with it. There has also been success with cytoxan and 6 mp as far as chemotherapy drugs go. Lately Dr's have been prescribing pulse dexamethasone in place of ACTH or daily prednisone and some of those kids are finally approaching remission when other steroids failed.

Hope this is helpful.

[tpotter]

Peglem,

 

What did you end up deciding to do?

[peglem]

Peglem,

 

What did you end up deciding to do?

Haven't made a decision yet, or brought it to a specialist, either. Allie is still recovering from recent flare up and I've had TONS of problems reaching the neurologist who was supposed to order a contrast MRI back in October when we saw her, but apparently didn't. The contact person for the neuro keeps saying she'll do stuff and call me back- then doesn't. So I have to call her back and feel like I'm being a major PITA. But, I'd really like the MRI before we take on something major.

[peglem]

I discussed at length using full dose Cellcept as part of my daughter's treatment for opsoclonus myoclonus. If you search Cellcept, you'll find it. At first it seemed beneficial as it suppresses both b and t cells and we were using it with rituxan which eliminates b cells only. The OMS related behaviors and rages eventually returned and we discontinued after a year. Some parents have had success with it. There has also been success with cytoxan and 6 mp as far as chemotherapy drugs go. Lately Dr's have been prescribing pulse dexamethasone in place of ACTH or daily prednisone and some of those kids are finally approaching remission when other steroids failed.

Hope this is helpful.

Yes, that is helpful, thank you.

[rjayne]

We're going to do a PET scan of the brain in about two weeks to determine the extent of brain injury. If you'd like I can share the results.