CellCept - Feedback?

[T_Anna]

I know that there are a few kids here that are on CellCept. I am trying to get more information to see if it is something that make sense for my DS 15.

 

My DS was dx with PANS in November 2012 as he was falling off the cliff of health and functionality. It is obvious to us in retrospect that he had symptoms as early as 2 years old of OCD, Rage, frequent urination, separation anxiety and Speech Regression. He was recently also diagnosed with Hashimoto's Encephalopathy, which is appropriate as he fits well in the PANS+ category.

 

Treatments:

Various Abs&Antivirals: Augmentin, Azithromycin, Doxcycline, Minocycline, Valtrex, Nystatin, Diflucan

HD IVIG: 6

Steroids: Oral LD and HD, IV Steroids

Plasmapharesis

Supps: OLE, Japanese Knotweed,

 

All the treatments (except psych meds) have brought our son back an inch at a time. However, we still have miles to go until we are functional. Currently, DS is probably an 8 or 9 in severity as he can function, eat, even cook and read, but does not leave the house, shower or go to school.

 

Does/has your child take(n) CellCept?

If Yes, dose:

Current Age of Child:

Guesstimate of how long they've suffered:

Other treatments tried:

Were those successful? To what degree (functional/non-functional)?

Does your child have another AE dx?

Has the CellCept made a difference?

If yes, to what extent?

 

I'm going to clean my inbox in case anyone prefers to PM their answer.

 

THANKS in advance,

T.Anna

 

 

 

My question:

 

 

[Missmom]

I have heard others discuss cellcept but don't know what it is? Is it a supplement?

[T_Anna]

It is an immune suppressant. From WebMd:

Mycophenolate (CellCept) is used in combination with other medications to keep your body from attacking and rejecting your transplanted organ (e.g., kidney, liver, heart). It belongs to a class of medications called immunosuppressants. This medication works by lowering your body's immune system activity.

[PowPow]

Does/has your child take(n) CellCept? YES

If Yes, dose: currently up to (max dose for her) 1500mg twice a day

Current Age of Child: 15

Guesstimate of how long they've suffered: August 2008

Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative

Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms

Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies)

Has the CellCept made a difference? Yes. Yes. Yes.

If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms.

 

 

 

Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved.

 

Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework!

Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.

[philamom]

So happy for you powpow. Praying there are no setbacks this spring!

[Hrosenkrantz]

Yes, powpow. Another story to bring tears to my eyes

[T_Anna]

PowPow, thanks for responding.

 

Many on the HE Facebook group also use CellCept so I'm beginning to think we should too.

 

Anyone else out there want to answer??? PLEASE!!!!!!!!!!!!

 

It might help my doctor prescribe it.

 

DS15 did the math per-assessment test for Laurel Springs Algebra yesterday, first time he's taken a test/done school work since January 10, 2013!!

 

Thanks as always,

T.Anna

[dcmom]

Happy beyond words.

[T_Mom]

Now that message from Powpow made my day!! Spring has nothing on this Powpow --

Thanks for standing firm and steady for your children and providing them with answers...despite setback after setback, you and your family are incredible.

[anonymous0121]

On 1/30/2014 at 7:34 AM, powpow said:

Does/has your child take(n) CellCept? YES

If Yes, dose: currently up to (max dose for her) 1500mg twice a day

Current Age of Child: 15

Guesstimate of how long they've suffered: August 2008

Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative

Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms

Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies)

Has the CellCept made a difference? Yes. Yes. Yes.

If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms.

 

 

 

Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved.

 

Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework!

Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.

hi, I was reading your post about cellcept, does your child just have strep or other chronic infections? my son has done 3 HD IVIG's and is getting much worse, severe tics/muscle spasms/jerking/barking noises, rages non stop and severe hyperkinetic activity and is miserable. steroids made him worse too, but I know he has autoimmune issues along with immune disorder low IGG/IgA/IgM etc... where did you get the PEX? we live in California and I cant find anyone that seems to help

would love to hear more on your experiences, my son has been homebound and miserable bad for last year, but also last three years the worst, he is 13.

thank you

[PowPow]

On 2/2/2014 at 6:43 PM, dgfindley said:

 

On 1/30/2014 at 7:34 AM, powpow said:

Does/has your child take(n) CellCept? YES

If Yes, dose: currently up to (max dose for her) 1500mg twice a day

Current Age of Child: 15

Guesstimate of how long they've suffered: August 2008

Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative

Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms

Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies)

Has the CellCept made a difference? Yes. Yes. Yes.

If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms.

 

 

 

Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved.

 

Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework!

Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.

hi, I was reading your post about cellcept, does your child just have strep or other chronic infections? my son has done 3 HD IVIG's and is getting much worse, severe tics/muscle spasms/jerking/barking noises, rages non stop and severe hyperkinetic activity and is miserable. steroids made him worse too, but I know he has autoimmune issues along with immune disorder low IGG/IgA/IgM etc... where did you get the PEX? we live in California and I cant find anyone that seems to help

would love to hear more on your experiences, my son has been homebound and miserable bad for last year, but also last three years the worst, he is 13.

thank you

 

Emailing you now