Anybody tried an immune suppressant?

[peglem]

We have the go ahead from the rheumatologist to try methotrexate and I have the rx filled and sitting in the cabinet. Will probably start either Sunday night or Monday morning. I wanted to wait for vacation so I can watch carefully for a reaction. Then I decided to wait until after Christmas, so possible side effects wouldn't spoil her holiday. Probably, it will be fine...but I don't know anybody else who has done this. It sucks being the trailblazer here. It seems like we've tried everything else, but just can't keep her from flaring and she flares from just exposure. It makes complete logical sense to suppress her own immune system and she's well supported w/ donor IgG and abx. I know why I'm scared, which doesn't exactly make sense- Allie's cousin who is just a year younger than her died of cancer a little over a year ago. He had been on Methotrexate as a chemo agent (but at much higher dose and IV). But there it is- I'm associating the drug with that horror.

 

I hope somebody can tell me that they have tried metho, and it was just the ticket they needed!

[tpotter]

DH used methotrexate for a short time for RA, but it didn't work for him (because he actually has lyme, but won't quite admit it, despite actually testing postive CDC.) Unfortunately, I can't give you more info than that. But, wouldn't it be like suppressing the immune system with steroids? Is the methotrexate for arthritis, since it's a rheumatologist who is treating?

[peglem]

No, not for arthritis. We were doing steroids @ every 6 weeks, but she was flaring more than that, so the metho was rx'd as a steroid sparing treatment. Its used in other autoimmune diseases, like MS as well. Thanks for your reply- did it make things worse for your hub, or just not better?

[Kathy4Him]

Our Rheumatologist has our son, 23, on Cellcept, an immunosuppressant, as well as prednisone and zithromax. We have completed 5 weeks of this. Labs done every 2 weeks are great. Inflammation in liver has gone away. Seeing baby steps with pandas symptoms.

I was nervous too when Dr. first brought this treatment up about 3 months ago, but so far it is fine. No negative side effects. The only thing is we were told it will take a long time to know if it works for ocd/pandas symptoms...perhaps a year.

[peglem]

Our Rheumatologist has our son, 23, on Cellcept, an immunosuppressant, as well as prednisone and zithromax. We have completed 5 weeks of this. Labs done every 2 weeks are great. Inflammation in liver has gone away. Seeing baby steps with pandas symptoms.

I was nervous too when Dr. first brought this treatment up about 3 months ago, but so far it is fine. No negative side effects. The only thing is we were told it will take a long time to know if it works for ocd/pandas symptoms...perhaps a year.

Thank you. That does sound hopeful.

[Kathy4Him]

We have the go ahead from the rheumatologist to try methotrexate and I have the rx filled and sitting in the cabinet. Will probably start either Sunday night or Monday morning. I wanted to wait for vacation so I can watch carefully for a reaction. Then I decided to wait until after Christmas, so possible side effects wouldn't spoil her holiday. Probably, it will be fine...but I don't know anybody else who has done this. It sucks being the trailblazer here. It seems like we've tried everything else, but just can't keep her from flaring and she flares from just exposure. It makes complete logical sense to suppress her own immune system and she's well supported w/ donor IgG and abx. I know why I'm scared, which doesn't exactly make sense- Allie's cousin who is just a year younger than her died of cancer a little over a year ago. He had been on Methotrexate as a chemo agent (but at much higher dose and IV). But there it is- I'm associating the drug with that horror.

 

I hope somebody can tell me that they have tried metho, and it was just the ticket they needed!

 

 

 

 

I just read your description of daughter and age. My son is non verbal also. He never was before this. I am going to pm you later and hope we can share. I am always curious as to symptoms in older kids. My son had just turned 19 when this started, but like you think he had it at a younger age. Thanks! Kathy N

[tpotter]

No, not for arthritis. We were doing steroids @ every 6 weeks, but she was flaring more than that, so the metho was rx'd as a steroid sparing treatment. Its used in other autoimmune diseases, like MS as well. Thanks for your reply- did it make things worse for your hub, or just not better?

 

 

Just didn't help him. But, he also hadn't treated the lyme properly.

[tpotter]

Your son became nonverbal at 19? That must be horrible for him.

Edited December 27, 2012 by tpotter

[tpotter]

No, not for arthritis. We were doing steroids @ every 6 weeks, but she was flaring more than that, so the metho was rx'd as a steroid sparing treatment. Its used in other autoimmune diseases, like MS as well. Thanks for your reply- did it make things worse for your hub, or just not better?

 

 

Peglem, I know you've been around at least as long as I have (and that's a long time.) But, have you completely ruled out the possibility of lyme? Steriods feed lyme, and that could be what is making her flare so much. Lyme tests are notoriously inaccurate. DH was diagnosed, because he was CDC positive, and he was very symptomatic (although he still denies it.) The rest of us tested negative, even though we are all symptomatic for lyem and co-infections. DS17 turned out to have the Bartonella rash ("stretch marks") that went down considerably about 50% with IV abx that were being used to treat enlarged spleen, elevated liver enzymes, and chronic strep. That's how we knew for sure the stretch marks were bart, and not just stretch marks (as some drs. still try to claim.) It was only after starting treatment, that he tested positive for erlichiosis, and he has had many of the symptoms of babesia, as well (enlarged spleen, elevated liver enzymes, and more.) Mine and DS20 were all symptomatic, and have improved with tx. I know that not everyone has lyme and co-infections, but I do believe it is far more common than people give credit for, and very difficult to actually diagnose. And, the bottom line is that unless all infections are effectively treated, our kids are not going to get better.

[peglem]

From what I've read, its impossible to rule out lyme. I've got a neg testing as far as CDC. She did test both IgG and IgM positive for mycoP in October. But, tough to get tested for lyme in AZ because it supposedly does not exist here. (I know 2 families who did test pos. though). Anyway, we have no more money- hub is at the end of unemployment. If its not covered by Allie's insurance, we don't do it.

I do wonder what might be hiding out- she's kinda cysty- MRI of hands and wrists showed a small cyst on each side. CT of sinuses showed a small cyst in sinuses. Abdominal ultrasound showed an ovarian cyst. Docs do not seem to think these cysts are important, so I gather it must be pretty common. I'll ask her neurologist next time we go in, but that's not until early Feb. She's the one that ordered the CDC lyme tests.

[1tiredmama]

I cannot answer your question, Peggy, but I can say that it makes sense to me to try an immunosuppresant for young adults with treatment-resistant PANDAS. Our next stop is a rheumatologist. I take Imuran with success and zero side- effects. I want my son to try it.

 

Please keep us posted on your dd's progress. Kids like yours and mine will most definitely be trailblazers.

[peglem]

I cannot answer your question, Peggy, but I can say that it makes sense to me to try an immunosuppresant for young adults with treatment-resistant PANDAS. Our next stop is a rheumatologist. I take Imuran with success and zero side- effects. I want my son to try it.

 

Please keep us posted on your dd's progress. Kids like yours and mine will most definitely be trailblazers.

I'm tired of being a trailblazer. I want to try what has worked for others and have it work for my kid. Just seems kind of unfair.

 

Her pediatrician tells me that she is the patient that made him the kind of doctor he is today and if it wasn't for her, he'd just be a mediocre doctor. I can see how someone like my daughter could force one to examine his own values as a physician, and I'm glad he has learned so much from treating her and has been able to use that to help many other kids. But here we still are, experimenting, more or less, to help her.

[parents4eyes]

xx

Edited October 4, 2015 by parents4eyes

[PowPow]

my child is currently on cellcept for PANS. She is (was!) a very severe case- who had several very clear and positive responses to pex and steroids. The cellcept has only been going for a few weeks.

I am hopeful it will prevent an exacerbation- of which she had one just at Thanksgiving- with an URI. She had another URI earlier this week and the exacerbation was much smaller- but hard to tell anything (as far as what helps what sometimes with PANDAS.)

 

 

edited to add: I do know of two other families (one of which is not on the forum at all, I believe) whose children are receiving rituximab and cellcept- not necessarily at the same time!- for PANS. So it is happening-- just not out here on the forum necessarily. It is hard to imagine a PANDAS parent not on the forum but they are out there!

Edited December 28, 2012 by PowPow

[melanie]

http://www.med.nyu.edu/research/pdf/cronsb01-Arthritis%20Research%20Review.pdf

 

Just found this. I have been prescribed this today!! So weird that I saw this this post peg!! I'm having some autoimmune issues myself and dr wants me to try this I'll let you know. Let me know how Allie is doing.