My daughter has dematomyositis and Rituxan has helped her a bit. Now her Dr. wants to keep Rituxan and add IVIG as well. Do you think that is a good combination?
I think IVIG is typically a good combination to Rituximab as it doesn’t cause any increase risk of infection as IVIG is not an immunosuppressive drug. There must be a reason your doctor is trying to do that and would definitely try it.
Hi. I was diagnosed with dermatosis on 2015. The pain.weakness are horrible l was hospitalized many times the doctors didn't have an idea of what I have.they did two biopsy n it came Back with the result inconclusive..l have chronic pain weakness on my hand legs and l cannot open a bottle this disease is terrible.now lm getting infusion 2 times a month.l had infusion before it stop because of covic it took priority.l take methadone gabapentin, methotrexate, clonacepan escilopram n many more .l admire you because. you care please help us we need to live a normal life .l rely on your expertise. experience.and we know even tough this disease doesn't have no cure.your are working hard to help us .thank you.
There is some data that suggest that IVIG may work in IBM but long term studies are not done. So currently the status is unknown. I give trial of IVIG for IBM patients for 6 month and continue if it is helping.
Hi doctor my name dilmohan i am suffering dermatomyositis since 2018 my age34 past Madison mmf imrune tacrolimus theses Madison I take before it’s not work well last my doctor start xeljang 5 mg twice day And ivig under almost one and half years my question I feel tried and all skin colour black before ivig it’s red I am living in bc Canada thanks 🙏
Hi Dr. My daughter was diagnosed with JDM when she was 5 years old, now she's 10. The 1st 2 years she was on prednisone and methotrexate. And also vit D frops, calcium, titralac, augmentin, folic acid and then some changes of medications to others. Due to lot of side effects we dicided to stop all medications temporary as her JDM was stable. After +/- 2 years, calcinosis was developed jn her knee, from which de Dr adviced to restart prednisone and methotrexate injection. She still has muscles weakness and getting bloated due to medications she's taking. She can't cl8mb steps by herself and needs support to go down the steps. She can't open a bottle cap herself. Is there any other medication we can be advised so that we talk to her Dr.? Kindly advice. Thank you
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Sir, Ivig is life long treatment or not?
If I have ivig deficiency, will my child have it?
Dr Aggarwal, was an analysis of IVIG response by myositis specific autoantibody done in the ProDerm study?
Excellent question- we are in process on getting that done.
My daughter has dematomyositis and Rituxan has helped her a bit. Now her Dr. wants to keep Rituxan and add IVIG as well. Do you think that is a good combination?
I think IVIG is typically a good combination to Rituximab as it doesn’t cause any increase risk of infection as IVIG is not an immunosuppressive drug. There must be a reason your doctor is trying to do that and would definitely try it.
Hi. I was diagnosed with dermatosis on 2015. The pain.weakness are horrible l was hospitalized many times the doctors didn't have an idea of what I have.they did two biopsy n it came Back with the result inconclusive..l have chronic pain weakness on my hand legs and l cannot open a bottle this disease is terrible.now lm getting infusion 2 times a month.l had infusion before it stop because of covic it took priority.l take methadone gabapentin, methotrexate, clonacepan escilopram n many more .l admire you because. you care please help us we need to live a normal life .l rely on your expertise. experience.and we know even tough this disease doesn't have no cure.your are working hard to help us .thank you.
Thanks a lot. Hope you find some resolution
Whether ivig is beneficial in inclusive body myositis.whether trial is done
There is some data that suggest that IVIG may work in IBM but long term studies are not done. So currently the status is unknown. I give trial of IVIG for IBM patients for 6 month and continue if it is helping.
Hi doctor my name dilmohan i am suffering dermatomyositis since 2018 my age34 past Madison mmf imrune
tacrolimus theses Madison I take before it’s not work well last my doctor start xeljang 5 mg twice day
And ivig under almost one and half years my question I feel tried and all skin colour black before ivig it’s red I am living in bc Canada thanks 🙏
Thank you sir
I have it I use ivig it lowers my ck levels significantly
I have dermatomyositis. Having a hard time with finding a good doctor to resume my IVIG treatment. It's frustrating.
Please show the data to your doctor that IVIG works. And should be slowly tapered down after patient is doing well.
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Hi Dr.
My daughter was diagnosed with JDM when she was 5 years old, now she's 10.
The 1st 2 years she was on prednisone and methotrexate. And also vit D frops, calcium, titralac, augmentin, folic acid and then some changes of medications to others.
Due to lot of side effects we dicided to stop all medications temporary as her JDM was stable.
After +/- 2 years, calcinosis was developed jn her knee, from which de Dr adviced to restart prednisone and methotrexate injection.
She still has muscles weakness and getting bloated due to medications she's taking.
She can't cl8mb steps by herself and needs support to go down the steps.
She can't open a bottle cap herself.
Is there any other medication we can be advised so that we talk to her Dr.?
Kindly advice.
Thank you
Has she tried IVIG?
It is great for kids as well.
@@docrota no, never tried. I will tel her Dr. regarding IVIG.
Thank you